My mom lived 10 years. You described perfectly the reality. So hard on mom and our family. I was totally exhausted after she passed. Just recently I started to remember the good days. This disease takes everything away.
Oh, does it ever. You completely have my empathy. We were so overwhelmed by relief after Dad passed that we forgot to mourn, now 14 months later, the grief process is in full swing. We miss him so much.
My Mother was diagnosed with Alzheimers 11 years before she passed in 2016. The last 3-1/2 years were rough. At the time I was speaking with a friend whose Mom was dying at around the same time and he was telling me about some of their conversations. I mentioned to him that he was fortunate that at least his Mother could tell him where she was hurting. My Mom was well past that point. Now I tell people to contact hospice to do an evaluation to see what stage their loved ones are at because these nurses understand and know of resources that most people aren't aware of. We had a wonderful hospice group called Care all in middle Tennessee and they helped me and my family tremendously, to us they were Angels. Julie thank you so much for all that you do!
you have my condolences for your Mom. Staging the disease is a very good idea -- thank you for this tip. My Dad has since passed, I wish we could have done this for him -- it was awful, mostly for him and my Mom. It was so difficult to watch.
Mom is on hospice with Alzheimer's. It is so incredibly painful to sit with her and she doesn't move, open eyes or try to talk. Your videos are giving me explanation and comfort in knowing what to expect next. Dad is really suffering. After 72 years he is about to lose the love of his life, his dream girl...
Dad passed 4 days ago from dementia. Death is such a natural thing - but we have fear. I watched hospice nurse Julie’s videos to prepare for dads passing - started watching last year. It took away the fear and shock, replaced it with empowerment because I saw the small changes in breathing - face - cheeks, skin etc. My sisters didn’t watch - they couldn’t look at dad the first 24 hours. I was rubbing moisturiser in his skin, putting on special lip balm etc. I slept in a bed next to him and held his hand all night. They DO feel us - dads breathing changed and heartbeat faster when we were holding his hand. There were moments - even an hour when I saw dad connect his eyes - it was beautiful. Like seeing him pre dementia! If I wasn’t there I wouldn’t have had that beautiful moment. MORPHINE MAKES THEM HOT - dad was hot so we had a fan in his room. The DEATH RATTLE does not sound the same for each patient - dad had a lovely soft rattle - heard it in the room but not down the hall! We all want a good death, but it was comforting and empowering knowing what to expect and I would happily sit with any dementia patient as they transition to death because it was such an honour to be with dad. Be honest - tell staff you have watched hospice nurse Julie, I did and the residential care dad was in watched a couple of videos with me because they loved how calm and prepared I was. Dads passing was peaceful, the sadness came when it’s confirmed. Before that, I was calmly reassuring my sisters that breathing can stop and restart - it did. Then I reminded us all this is what dad wants, a peaceful death and we are happy this was his experience. My sisters gad been so scared, but I told dad I love him, when he lets go of my hand he will be holding his mums hand… it’s a beautiful place and he doesn’t need to feel scared, it’s ok to go. I am broken hearted dad has gone but relieved he no longer battles dementia. My sadness isn’t in his passing, his memories and personality went a long time ago - I miss touching his hands, face, kissing jus cheek…..so my friends when dementia has taken everything but their breathe, hold the hand, moisturise it, put their lip balm on and in those moments, be present and make memories by caring for your dad and holding his hand and feeling his skin so it will always be in your memories- no regrets xx
I am so sorry about your Dad. It's such a hard disease for the sufferer and family to endure. We went through it, it's such a cruel disease. I'm glad that you felt more prepared. I miss my Dad -- d. o. d. Jan 24, 2022.
My condolences to you and your family. That was as beautiful a story as I could've hoped for in such a sad circumstances. Bless you for preparing for that time and that moment and being such a loving child ❤️!!
I miss hugging my Dad, my arms and heart ache for him. I miss the conversations and the laughter, what made my Dad who he was, completely evaporated. Towards the end his spirit faded away. I'm so sad, when I think of the last time I saw him, but the good memories are slowly rolling in, but it's still intense mourning right now for Mom, me and the rest of my family.
@@papermasonprayers for you. It will get easier but you will never forget him. He will always be with you! Daddy has been gone for 24 years but I think of him fondly every day. 💙🙏🏻😇
@@rhondathomas7952 Thank you. I'm glad you can think back on your Dad with fondness -- remember all those days you had with him. Now all the events in my memory take place on sunny days, it seems.
I was a long term care nurse for 35 years before retiring. Towards the end of my father's life he developed alzhiemer disease. There was always one story he told me over and over about his service during the Korean War. His ability to play the organ made the difference between his going to the front lines to fight, and being assigned as chaplains assistant. Mom would try to shush him. I explained to her that story was very important to him, and as long as he was able to tell it I wanted to hear it from him. It was very hard on mom. I did all I could to help her understand the changes and we kept him out of the nursing home. Through it all he never forgot Wheel of Fortune. As the years passed he quit solving puzzles, then he could only figure out two or three letter words and then just guessing a letter or two. Even when he was barely able to form word he watched the clock when it was time for the "Wheel". The end came when he fell and broke his hip. The course from there was completely predictable. The only comfort is knowing he had a close relationship with the Lord and he's in heaven now playing the organ for a Heavenly choir.
Linda, you reminded me of my grandma. She had Alzhiemers for a long time before she passed away. The one thing she could do for the longest time is play the organ! She even became the poster girl for the Adult Day care facility she went to. She lived with us as teens , then went to live with my aunt in Oklahoma. There was a day when my aunt told us grandma flushed her teeth down the toilet lol! My mom ended up with dementia as well and we lost her last July. We focus on the good times with her. Even with her dementia, we tried to get her out and have fun. I'll miss her until I see her again ❤
@H&A M you made me smile when you shared how your grandma played the organ. My grandma also played the organ, which is why my dad and his brother learned to play. My dad took it a step further and became a classically trained concert organist. He was a brilliant and talented musician. He played the organ in church my entire life. He played the organ at my wedding. There was no one who could hold a candle to his ability. As his dementia took hold of him he lost his ability to play the organ he loved. His Hammond church organ is in the formal living room where mom still lives. I can still hear the beautiful music. Sadly neither myself or my sister play. I do have a tape of my uncle playing Bach, and Bethoven on my grandma's ancient Hammond organ. It's almost like dad's playing as their styles were very similar.
My mom has it Sux I'm the only one taking care of her and we get no brakes. Been years. This is tough cuz she wants to leave all the time. She has gotten away b4 and the worst things happen to her people suck. I fail at protecting her. Can understand why this happened but it is what was delt to us so will take it as that
I was a caregiver for my mom for 10 years. In 2009. she was functionable and could bathe herself and even be left alone for a few hours. Her meds were monitored, and I used to kid and say I was her personal GPS system. In the winter of 2018, Presidents Day weekend to be exact, she was hallucinating and even speaking in a different voice. I brought her to the hospital ER and the doctor explained the same thing. He got a piece of paper and drew a horizontal line, then went in a downward motion with the pen. It was like she went off a cliff. She rehabbed at 3 different facilities for 37 days with new meds and adjusting the others. When she got back home, she was now incontinent and had to be monitored constantly and a totally different person. I held on for another year and couldn't do it anymore. In July of 2019, she went into a nursing home. She went downhill pretty fast from there. She had lost her ability to swallow and was "pocking" her food and was put on a puree diet. In December, the nursing home had a mysterious virus that hit everyone. There's a lot more to this story that would make it too long. In the last week of December, she had Sepsis and pneumonia and sent to the hospital. Her kidneys shut down and she passed within 24 hours. The memory I cherish, is that even though she had Dementia, up until her last day, she knew my name and that I was her son. Thanks for what you do.
@@claudialupper Thanks.That happened with my sister. She would tell people she was someone who worked with her. Then she would catch herself and correct it. As difficult as it was, I would do it all over again. Hang in there and God bless you.
First im sorry for your loss. And I admire you for taking care of your mom. I’m a live in care giver and I’ve seen the person change like a flip of a switch. Has gotten more nasty come the evening time. I know it’s sundowners. In all honesty I’m just not equipped. I will be stepping down and departing from this role. I can’t handle it. It’s taking over my life. I’m exhausted by the time she heads to bed which is about 6:00. I’m constantly re directing her. Her husband is 83 and he tries but he has his own issues. I’ve been doing this since August of 2023 and I think it’s time to quit. It’s ruining me. I’ve suggested to the husband that since she wanders at night it’s dangerous and should be in a facility if she wanders then there is staff. I’m 24/7 but I can’t I have to sleep myself. It’s not easy. I think it’s emotionally taken a toll on me. Mentally I know for sure. To those who care for someone with dementia God bless you.
Thanks. It certainly did burn me out and I know what you're going through. As I stated above, for years my mom was pretty functional and quickly downward spiraled. I knew it was time to stop caregiving when I would get angry, and she would be terrified. At times it was comical. At night I wanted some down time, and she would want a piece of candy or complain about a body ache. All she had to do was look at my face and tell I was getting pissed. She was pretty mobile on her feet and run away from me. She would run to her favorite chair in the living room and actually put her hands up to her face like Macauley Culkin In "Home Alone." That's when I knew to back off and leave her alone. I had some counseling during caregiving and some after then it stopped when the pandemic hit. The counselor told me I needed to stop beating myself up as getting angry is normal and you can only take so much. I knew then that she needed to be in a facility. Hang in there and hope everything works out for you.@@ConversationsWithGodST
@@alcambrola2834 thank you so much! You actually made me feel better. I do get angry. I felt so much guilt. At night she will go to her bedroom she will come down and ask for gum. She chews gum like I’ve never seen before. She was diagnosed about 10 years ago and I’m seeing her getting worse. About 3:00 she changes. It’s so hard. She closes blinds and checks doors to make sure they are locked at 4:00. Her and her husband have been married going on 60 years. He is having a hard time coming to the conclusion he needs to place her in a home. Once I tell him I can’t do it anymore he will just claim he will take care of her. It’s just a complicated situation. I think over the next few months I’m sure he will start to see her quickly go down hill. It’s just too hard for me. Thanks for listening. You did your best and God bless you for caring for her as long as you did. Take care
I am a grandson and currently my grandmother fell this past weekend and is bed bound now. It’s extremely hard on me. We are very close! I’m heart broken! I got her to eat chicken noodle soup today and write ✍️ a letter of my name. I did Christmas cards for all the family this past year from her in her hand writing. I’m not ready no one ever is, but their isn’t a grandma in the world like mine! She’s the best! ❤
@@lisakrajewski4699 thank you and yes he does! My grandmother witnesses to everyone, I’m so glad she is saved and we just found out today my spouse lost her job today too! When it rains it pours. Tough day! All the prayers you can send my way are appreciated. 🙏🏻 ❤️
Thank you for posting this! Brings back memories of when my mother went through ALZ. She (we) suffered through this for at least 11 years before she finally secumbed from her ALZ. After she passed, some people were wondering why we did not show much grief, it was because we grieved all the way along and her death was relief from all her suffering.....
That happens. I had a wife of a former tenant tell me a year after her husband died of a stroke and had dementia that she never really grieved for him after the death. I reassured her that it’s normal. You lose them little by little so a lot of times you do the grieving for them while they go through the disease and by the time that they pass it’s not so much sadness but happiness that they are no longer suffering. I like to think that they go to heaven and are doing all the things that they could no longer do and eat all the good food. I imagine them running skipping and doing flips.
My mother clinically died after 15 years with dementia but was actually dead after 10 when her memory & experiences were gone, the things that made her a unique person. The last 5 years she was just a shell & didn't even recognize her own children. Frankly, I rather die from being hit by a bus.
I’m a nurse here In the UK and currently laying beside my sweet Mama who Is getting ready to transition If not this evening, then tomorrow I believe 💔 I have had to explain to my dad that she is refusing sips and that needs to be respected, although it is heartbreaking. I think you’re just genuinely amazing for sharing and highlighting the importance of how dying well matters. This normal process needs more attention as It’s important as being both ❤️
Gosh, do you know or what? My mother passed away at around midnight today. All these steps are exactly like you said. It has been very difficult. I know my mom is now happy & whole!❤
Thank you Jennifer & Tory. I believe the journey getting to the end was the hardest thing ever. You slowly lose them & at times the most simplistic things are the most difficult. But at the same time it makes the passing easier. We (my mother & I) prepared by having discussions about when it would be “that time”. I’m really grateful that she passed in her sleep so very gently. I’m just so very grateful that SHE was the one that was given to me for a mother. 💕
My mother was diagnosed with Alzheimers in January 2020 though there was signs of the disease about 18 months earlier. My mum entered high dependency care in May 2021 and passed away on 10 November 2021 at age 75. One of the most difficult things to watch as her son and ultimately her body was so dehydrated as she couldn’t eat or drink during her last 6 weeks or so. She didn’t know who I was for her last 3 months which was hard. Thinking of her today on Mothers Day 2023 ❤
I took care of my dad for almost 4 years. He died, at home, last May. He was on home hospice for 8 months. It was, my dad, me, 2 Medicaid HHA and a very good friend. What we all went through all together! I have stories to tell. Please respect all people who come to help! Right after he died I found this channel. Wish I had found it sooner! The advice here is GREAT! Love the channel! 4/29/23
My mother is currently in LTC, and is very near the end. The staircase comparison you described has been exactly our experience. She has not recognized me in a very long time, eats very little, refuses fluids, is wheelchair bound & unable to communicate. Visiting is heartbreaking, she can’t keep her eyes open for any length of time. I’ve done all I can, but still feel guilt that it isn’t enough. My mother ceased to exist long ago, I now visit an empty shell that resembles who she used to be. It’s devastating.
@@catherinerosa-baker2937 I think my mother thinks I'm a stranger who poses a threat to her. Or that I'm a caretaker who's there to roll her over and change her diaper. When she wakes up long enough to see me, she looks terrified and screams, "No! No! No! I don't want to. Never! Never! Never!" Then she falls back asleep. What good is it doing either one of us to visit her? The only reason I do is because my father expects me to do it out of duty. And so that he doesn't have to face it alone. Misery loves company.
@@culturematters4157 This is the worst part of love -- not seeing purpose in what you're doing. But it's also the best part of love, because you do it anyway. You're also respecting your Dad's wishes -- also great love.
Our family decided to put Granny in a nursing home when she was unable to be left alone. She might go out and get lost or burn the house down when cooking. She was 88. She absolutely hated being in there and complained about all the old people. She was the oldest one in there 😂 One day, after breakfast, she went to her room for a nap, as usual.... and she died. Just like that! I would pay to die that way.
I worked in a locked facility for people with dementia whose resulting behavioral disturbance had gotten them booted out of ordinary nursing homes. By the time you get them in hospice, they aren't doing anything at all, they're in a quasi-vrgetstive state. But I've been kicked, hit, choked, punched, cussed out, had full diapers flung at me, you name it. I quit working when my own moms dementia progressed to the point point that she needed me to care for her, which I did, full time, until she died of aspiration pneumonia. She had both Alzheimers and vascular dementia, and the vascular issues meant that she still was talking somewhat coherently,.recognized me, and was able to express her wants and needs when her.body gave out. Thank God for that. We were able to share music and watching a favorite concert on video just a few days before she died; she was also "with it" enough to receive the Sacraments before the final spiral, which gave her comfort.
This describes my mom 100%. She followed that progression...... I had to figure it all out on my own and am glad you are here to help folks out now! I realized too late that my mom was "packing up" to move (?) and I'd see where she was putting clothes, jewelry, personal care items wrapped in tissue and shoved in shopping bags piled up on her bedroom floor. I'd empty it all out and put back in drawers and closet. Sadly somehow I missed her rings and fine jewelry she'd rolled up in Kleenex which either I or the home Heath aids tossed not realizing mom had wadded jewelry in. It's a good idea to be wary of your loved ones actions as they tend to "hide" or stash things..... including food and medicines. We discovered my mom had been shoving used depends and pads behind stuff in her bathroom closet. The smell alerted us to the situation. Didn't confront her just made sure I checked the closet every day. It's a confusing and ugly disease.
As an RN, who too worked as a Hospice Manager, Thank God for you in educating the public and others in hospice care. It’s not always what you’d think as depressing and sad. I learned a lot from patients in how to die with dignity and accept their death. This is a niche of nursing that is often “taboo” that people don’t want to hear about death and dying. What you offer is SO important and educational for those in hospice and ready to enter hospice. I find your videos comforting as well as educational. I’ve come across patients that when they hear the word hospice that evokes a negative connotation with death. Your videos enlighten all of us just how wonderful a service hospice is and what help and support we can give the family. I can’t stress enough that what you provide is so necessary in offering answers so many people need. Thank you, Julie! ❤
I'm my Moms caregiver..I work full time Sitter during day .I do the rest It A 24 /7 Job..but when she has Clarity it WOrth the Struggle..I remind My self of the Scarfices she made Raising 4 Children..One Kidney and Crones ..She's such a Fighter...she bounces back All the time..
My mother just died on April 28 from Alzheimers. She was first diagnosed in 2018 and her trajectory was very similar to what Julie explains in this video. I thought I was prepared for her death but I am still in shock that my mother is no longer with me and that I have to go on without her. I think the only solace I have is knowing she is no longer suffering. I love you Patricia you were a great mom. R.I.P.
Julie, it is my greatest fear... My "opa" had this and he lived until his 72 by himself. He went into an LTC facility where he went through the stair steps. He experienced WWII in a worker's camp and this came back to him frequently and he got so violently mad during this period, most of the time we did not know what to do, should we visit him or not. My dad was at his wits end as he wanted to help him, but he couldn't. Opa passed away at the age of 83, he went fighting and screaming, it was horrible. I was only 14 at that time but I remember it so very well. We had peace with it after the fact, no more pain and agony.
God bless you nurse Julie. My father is 83, it's his 10th year since he was diagnosed with Alzheimer's. It has been very difficult for my loved ones who are his caregivers. It's very hard seeing him decline. Thanks for this video, it will be a great help to us.
I just lost my husband from Alzheimer’s less than a month ago. He was on hospice after a trip to the ER with severe rectal bleeding. His blood work was off and he also had blood in his feces. He could still take tiny steps at that point with help. He started to pocket his food and then eventually refused water and food and was bedridden. He lived for 5 days without eating or drinking anything. Hospice was with him at memory care the entire time he was transitioning. They kept him comfortable, clean and so peaceful. I have so much gratitude for hospice care. He lived with Alzheimer’s for 8 years before I had him placed in memory care on January 15th and he passed on May 18th. 💜
My mom was diagnosed with Alzheimer’s in 2017 at 87 years old. She has done exactly as you described it-slow and in steps. Last June she was hospitalized with infections and from there was admitted to hospice care who accepted her with the diagnosis of cerebral atherosclerosis. She not only came out of the hospital but she got and survived covid. She gained enough strength to go back to daycare. She’s had more utis since coming out of the hospital but with antibiotics she has each time gotten better. In the fall she started falling so she had to be in a wheelchair. By December she was bedridden. Today she is still in hospice which makes 10 months. It has been very hard as my husband and I care for her in our home. She now has bed sores and I see more of a decline. So Alzheimer’s is a terrible disease that progresses very slowly but very definitely. Thank you and Nurse Penny for all your help in understanding the hospice experience.
Thank you for this! My daughter and I love to watch you but we’ve been so perplexed since a few times Grandma has been through all the signs that her death was imminent and then she bounces back like nothing ever happened and at first we thought it was the rally but no she carries on! She just didn’t seem to fit the pattern you teach us about. When she does bounce back she resumes eating and she doesn’t have too much trouble with that. She chews very small bites for a very long time but doesn’t choke. Sometimes she’ll sleep for days waking only for food. This week she has a day where she was so lucid it was like her old self. She remembered names and places and time frames but it lasted only about 5 hours and then while she stayed attentive and communicative she started slipping and then she slept for about 48 hours and returned to the state she’s been in of not talking much and being confused and acting somewhat babyish. It’s remarkable the ups and downs of if. We’ve learned not to get too upset over the changes. We just thoroughly enjoy the moments when she comes back to us. She is going to be 97 in August of this year (2023)
Thank you Julie 💕 My mother had dementia and died alone in a nursing home . I live overseas , so could not be with her . Thank you for explaining and all the good work you do - God bless you 💕🙏
My dad passed away in 1986 from pneumonia as a result of Alzheimer’s. He was only 66. Now my sister is in a memory care center and from your description, I now know she is not in the end stages. She is declining so quickly, tho. She has had signs for many years but was only recently put in the care center about 6 months ago. This has been the longest goodbye…I miss who she was so much 😢❤
Thank you so much for these youtubes! I lost my husband to Alzheimer's, COPD and emphysema last June, and have grappled ever since with his slide downhill to death. You have clarified so much of what happened for me! The doctors were all focused on "fixing" various symptoms, and I did not realize that most of those were end stage progression. I wish I had seen your videos a year ago. Still, your explanations have helped me quite a bit! ❤
We are watching my mother in law die with Alzheimer's. I have watched your videos to educate myself and know what to expect. She is 96 years old and we took care of her for 6 years. She has been in a nursing home for a year. We are seeing many of the things you describe. Irregular breathing, staring, she can't swallow liquids, her lung collapsed and now she has an UTI Infection. we are 70 and 71 years old and it has been hard to watch her decline. Thank you for your videos. We have been told to expect 20 days and are praying for God to take her to her reward in heaven as soon as he sees fit. This disease is so hard on everyone invoved.
Watched both grandmothers go through this for 10+ years. Now my parents are getting up there in age and I fear for them as well, so I am mentally preparing myself now for the long hell that awaits. I myself am going to get tested this year to see if I have the gene for the disease. I am married, but no children, so I need a plan in place to make sure I don’t suffer like I have seen others go through. Even if it means taking my own life before it’s too late. I work in the world of nursing home care. The care for the elderly is at its lowest. These people are not getting the care that they worked their whole lives to have. It’s shameful and I will not be a victim of it. This disease slowly takes away every ounce of dignity you ever had and leaves you an empty soul in a dirty diaper with a recurring UTI because no one at the nursing home properly cares for you. Have plan B in place. This is not a road you want to go down.
Going through this now with my mom. It is awful. I have great empathy for anyone else going through this and the deepest respect for nurses and aides that are helping along this journey.
A family member was just diagnosed with dementia, I’m just trying to learn whatever I can to try to help everyone make the right choices concerning the type of care this person will require.
My mother died from Alzheimer’s. She was sick several years, and my dad and I were able to care for her until she wouldn’t get out of bed. She went to the hospital until we were able to get her on hospice. While there she began to develop a bed sore. We moved her to a care facility where that got much worse. They had to clean it daily and it became very bad. She wasn’t verbal at the end, but she would cry out in agony when they treated her. Fortunately, she was only in there for 30 days until she passed. What I found intriguing about the disease, was how she went along on a plateau for a while and then one day would “fall” off and lose some ability almost immediately. It was like you could look into her brain and see what area was being affected. Especially notable was when she lost some of the forebrain. She just started cursing when she had never done that before. It was also interesting that when she was placed in the care facility, she confided in my nephew that she would only be there a month and she died exactly 30 days later.
The stair step description of decline is very accurate. We try to have Mom do as many of the little things that everyone has to do in getting dressed. Like buttoning her shirt or zipping up her coat. But even that is starting to be too difficult for her. We are very closely watching the progression.
I enjoy her vidéos. I’ve been a Hospice volunteer for 11 years now and have been with patients and had to watch their decline. But it was an honor to interact with these wonderful people.
Thank u, thank u. My mom was in memory care 1 year 10 months. Last week the dr. called on Tuesday to ask if it was ok to put her in hospice care, the hospice nurse called on Wednesday to say she was so much worse than the day before and she died at midnight that night. I have to say she finally looked at peace, she looked like she was sleeping and her face looked angelic. It is a horrible disease and I hope no one has to ever go thru it. Finally rest in peace Mom.
We're on the stairs. My mom has had dementia for at least 15 years. Stroke four years ago, thought that was it. Stroke again two years ago, bounced back. Fall last November, really injured issues with blood thinners, slow downhill with all the other fun stuff since. She had another fall yesterday, not hurt, but it is obvious that she is further into her decline. It's so hard to deal with. I have lots of support and love your videos.
I (and my family) are in the thick of this right now. Mom has been homebound for 2 years (sent home with hospice, COPD, Asthma, she had a pneumo-thorax but she is high risk, and DNR, so nothing they could do for her). Well, here we are 2 years on. I had to call an ambulance for her a few weeks back - dehydration, potassium treatment, low grade pneumonia, still traces of UTI after 2 round of Bactrim, extreme back pain due to fibrosis from being mostly bed bound, etc. My Dad is elder and no longer able to caretake, so we made the tough decision of assisted living/memory care. I wouldn't wish this on anyone. I saw my Grandmother go through this, totally different when it's your own Mom. She begs to go home, but she needs assistance with everything. She's resisting eating/drinking/taking meds. I'll be honest - it's such a non-quality of life I wish for her quick process death, on her behalf. She's only 74 but seems like a 90 year old. Super tough process, and I am struggling with the facility in the way they are handling her.
My mother has had Alzheimer's for 10 years. The past fortnight I was preparing myself for her death as in this month alone she had covid, repeat UTI's, didn't eat for 3 days and barely eats and drinks anyway. She collapsed onto the floor at 3 a.m in her care home and was put on observation for 72 hours, she lost a lot of weight, her hands and fingers were blue tinged, she was gaunt and lethargic and is now in a wheelchair. She has also been left with her arm constantly shaking after covid. Now she's eating a little although still not enough, the blue tinge on her hands is fading and she's not as gaunt. The roller coaster of emotions drains the life out of me and I'm left exhausted by it. I nursed her myself for 9 years and she's been in care for almost a year. It's hellish watching your loved one lose their mind and identity. My visit the other day had a carer say to me it's comical listening to the alzheimer patients talking away. It may be comical to the carer, it's far from comical for the family. Carers only know these people when they are ill with the disease, they don't know the real them. We've watched our loved one's brain essentially die, their persona change and their dignity lost...there's nothing comical about it. Your description of the stairway, I've never heard before, but it's a perfect description of this disease. It is torture and cruel.
Great to see everyone’s stories! Having been a carer 13 yrs so far, have found the journey quite lonely, as family/friends who have not experienced dementia world simply avoid the conversation. Reading all the comments here much appreciated!
My husband was diagnosed abt a year and a half ago with young onset ALZ. It is quite different in how it presents, so at first we thought it was vision issues, but then when he stopped being able to read numbers (he worked in finance), we knew something more significant was at play. We have been told young onset progresses more quickly. We have a 7 year old and I just hope that some of the amazing progress happening in this disease favors our timing. Or, at the very least, we have enough time to create good memories while we say this long goodbye. I never imagined experiencing something like this in my 40s. It is brutal and heartbreaking.
I really appreciate your videos. My mom died 7 weeks ago from Alzheimer’s. We were fortunate. Mom was pretty functional until 2 weeks before she died. She was so confused and terrified. She didn’t know who my husband or I were. She knew our names but not the relationship. She was extremely agitated. I sat in front of her, holding her hands, looking her in the eye, and breathing slowly so she could copy me. I asked her what hospice was. She described to the letter what hospice is REALLY about. I then told her she was a hospice patient. Two days later she complained that it hurt to go potty. We got her on meds immediately. She started feeling better physically, but she didn’t return to the level she was at I knew it was the end. Today would have been her 90th birthday.💔
My mom, who is in end stage dementia, entered hospice a week ago. My dad is caring for her at home with hospice help. In just a week's time, she rarely says a word, is bedbound, and is denying food. My grief comes in immense waved. If she won't eat, how long will she have?? This is agonizing. Thank you for caring for our loved ones.
My mom had a year of crying, walking the floors crying because she knew something was wrong but didn’t know why. She begged for something for anxiety which no one would give her. Then she refused meds and doctors. She went from being aware to one year later woke up (after months of being combative, locks on the door) hallucinating and in two weeks, gone. I love her so much. My sisters is passed so it was just she and I. It wasn’t until I finally forced her to go to UNT. The doctors there are some of the best there are for dementia. She was at stage 6. Out of 7. They thought it was maybe Alzheimer’s mixed with vascular dementia. Her sister 8 years younger died of Lewy body 3 months after mom. I sure hope this disease doesn’t wipe us all out! These disease are terrible, awful and excruciating to walk through. My mom was so beautiful and I miss her every day.
Julie, you are wonderful and beautiful. I loved watching you speak Hospice nurses are Angel's. My mom passed away at The Landmark in Vernal, Utah a year ago. Those nurses were so kind and compassionate to the end. One nurse wouldn't leave her side, even when her shift was over. She fell in love with my mom. Mom gave indications that she wanted this nurse around her because she was scared. You're very direct in your phrasing. You sound just like my wife (40 year RN). You put your clinical business face on and do your job. I'm sure everyone would love to have you on the case at the end of life.
This is so good. We could have used this 6 months ago. Thank you, it explains what we went through, what was normal and what we couldn’t have changed anyways. It helps smooth over some guilt feelings.
My mom is in an assisted living facility with Alzheimer’s Dementia. We’ve seen the downward stair step progression as you described. She still recognizes me, but has gotten pretty much non-verbal. This is one of those diseases that just seems to be cruel to the person with it and all of the family as well. She’s going on 3 years of the initial diagnosis. She declined extremely quickly but seems like the last 6 to 8 months has leveled out. Kinda just waiting for the next downward slope at this point. Thank you for doing this video (and your others). I just bumped into them a few days ago.
My mom had dementia like described for about 10 yrs and was at end stage and still knew me very well. We could talk but usually whatever I said she answered with something totally off the wall. I'd just answer her statement then she'd respond with another thing totally off the subject. It made her happy we were 'communicating'. One night she tried to get out of her bed, fell and hit her head terribly hard, breaking bones in her face. She'd had a left hemisphere stroke and couldn't communicate. She didn't seem to know me anymore. She seemed afraid of me. She lasted 2 weeks in this awful condition until she passed. I wonder so much if she knew I was with her when she died. It seemed to be such a struggle of a death. She had the death stare and wouldn't respond to me at all. I'm still so sad over all this and wish she'd known I was there with her.
I moved my mother into our home in March, 2020, as she was diagnosed with Lewy Body Dementia in 2018, and 2 years later it was determined she could no longer live alone. I am the oldest of her 3 daughters, age 66, and my mother is 84. Since my retirement in February, 2020, it seemed the most practical and beneficial thing to do was to bring my mother to live with myself and my husband, so I could be her caretaker. In September, 2020 she fell and broke her hip; in February 2021, she was diagnosed with metastatic breast cancer and went through the lumpectomy, chemo and radiation (now cancer free). Initially she was reasonably self sufficient but not able to be trusted to cook or drive. At this point, her cognitive abilities have decreased tremendously, having no memory recall and needing assistance with bathing, dressing, eating, and taking her medication. Due to the increase of her needs, and myself being the sole caretaker, it has been quite taxing. I thank you so very much for putting these videos out, as they are quite educational and, in a sense, very reassuring.
I'm living a similar experience with my wife. When people ask how I'm doing my answer is "Some day I will miss all of this but not today." Friends and family have kept me sane and my simplest prayer continues to be God help me, I don't know how. I know way too much about death and dying. One conclusion I have is that there are worse things than death. Dementia and and cancer are only two worse than death, there are many others. I quit going to caregiver support groups because each time I came home knowing I didn't have it so bad, there were many others worse off, The support groups were depressing but I did learn a lot and know where to go for answers besides prayer.
My wife's parents bought into a retirement living facility 9 years ago. Her mother had been showing signs of mild dementia for many years before that. My F-I-L passed away in 6 months and M-I-L has been residing in supervised care and then memory care of the facility for 7 years now. We've spent every possible moment all these years doing things with her until she was unable to go out with us 4 years ago. We are with her every weekend. I'm very grateful that she can afford the extreme costs of her care because I don't think my wife and I could have handled it on our own. I keep wondering how long can this possibly last? There is no quality of life. I feel so bad for her.
My 88 yr old daddy hasn’t been able to chew regular foods so they tried to grind his food but the nurse just called me this afternoon to let me know that daddy has a 102 degree fever and hasn’t eaten anything the last couple of days. They are going to try some liquid medicine to try and bring his fever down . She said this might be him declining but she wasn’t quite ready to say that yet. Thanks to watching your live Q & A shows I am preparing for the “ actively dying phase” and my siblings and I are okay with daddy going to sleep in death because we have complete faith in Gods promise of a resurrection of our daddy back to a paradise earth. My daddy firmly believed this and found great comfort in knowing what was going to happen to him after he died. Thank you Julie for your candid talk about the dying process ❤️ 7:11
My mom was on Hospice for 1 full year before her death in August of 2021. She was the exception to many Alzheimer's rules, but one was that she could walk unassisted up until about 3 or 4 weeks before she died. At that point, the thing that brought her down was actually Covid. Amazingly enough... she recovered from Covid! However, her body was so weak by that point that she didn't stair step anymore. For her....Covid was a blessing to release her from the prison her body had become.
My mom has dementia and was diagnosed right before the pandemic. At the time she lived alone and my daughter actually said something to me about it. I went with her to the dr (after calling and telling them what was going on). Initially she refused any outside care then she lost her license (thank god - she was driving the wrong way around a circle and got pulled over. She forgot how to open the window so attempted to open the door. Fortunately the cop figured what was up but she had to retake her drivers test and failed it. It was hard bc she lived 45 min away and I would have to go there 2-3 times a week to help her grocery shop, dr appts etc. I’m a single mom with my own business so it was hard. I have a sister but she does absolutely nothing to help. In fact she moved out of state in the middle of all this. You are right about it being like stairs. She finally agreed to move into a retirement center - like assisted living but they don’t assist. All of a sudden she took a big step down. Stopped going to meals, taking her meds, bathing etc. I had to find an alternative quickly. I decided on the one closest to me closest to me as they are all pretty similar we spent a week packing up her stuff (this was the one time I asked my sister for help and she refused. Said it was too far a drive - just under 2 hours and she’d have to board her dogs and spend over $100 in gas and tolls. She had no trouble coming up here when she wanted to sell her house and move out of state and needed the deed transferred to her and the house was in my moms name as my sisters credit is in the toilet. That’s ok. She’ll be back again as soon as my mom passes away to collect her inheritance. As my moms POA I intend to drag that out for years!!! Anyway the night before the move my mom sundowners really bad. Kept trying to leave my house saying I was lying to people about her condition. She was angry with me and it came out of no where. It was awful. She tried to leave 3 times and she had a bad limp at the time as the result of a previous stroke and really needed to use a walker but refused to. I was so afraid she would fall. I called 911 but they said if I couldn’t calm her down and they were forced to come out they would have to baker act her. I finally got her inside but didn’t sleep Tat all that night. When I mentioned it to the new assisted living facility she was moving to that day they said she was a flight risk and had to put her in memory care. To this day I feel horribly guilty about that. She was there 7 months and it was an absolute nightmare (I swear this is like a soap opera). One of the residents kept going in my moms room (and other residents as well) and stealing her stuff. What concerned me the most was my mom would wake up and this woman would be creeping around her room in the middle of the night. I can’t tell you how many times I complained. They kept telling me they were moving my mom (and several other residents) to the first floor as they were higher functioning but the kleptomaniac wouldn’t be going and it would take place next week. This went on for 21.2 months. Then one afternoon I was going to pick my son up from school and my mom had taken a “minor fall” and they needed my permission to take her to get an X-ray - just a precaution. I said of course and I was getting my son but do I need to come. They said oh no. Your mom is alert and fine. We will keep you posted. 3 hours later the hospital called to inform me she had a broken hip and needed to be transported to another hospital for surgery. Her “little fall” was the result of that resident shoving my mom across her own bedroom after my mom went in there and startled her as she was stealing items from my moms drawers. My mom spent a week in the hospital and a month in rehab. She will never walk again. Of course I hired an attorney (of course they are attempting to cover the whole thing up. I’ve since learned my mom was the second person that resident put in the hospital in a month. She is now in - it’s considered assisted living but more of a home. Only 3 other residents and run by a loving Indian couple. 3 moves in a year. I’ve been exhausted!!! She now has issues with UTI’s all the time which make her symptoms a lot worst. It’s SO hard. Her biggest issue had been speech but now she’s forgetting things and people. I feel horrible saying this but sometimes I feel it would be easier if she passed away. She is only a few miles away so I see her 2-3 times a week but I always feel so much turmoil and anxiety before walking in there. I feel so guilty for feeling that way nut just hate seeing her this way.
That’s exactly what happened with my dad. He was in long term care for Alzheimer’s-dementia and he developed a UTI. He was placed under hospice care and passed away within 24 hours.
I'm exhausted in every way and we're just a handful of years into this. The idea that it could be 10+ years is utterly terrifying to me. I don't know how to face that possiblity... Mom is already 83 and not generally healthy, with heart and circulation issues, including pacemaker, has had DVTs and PEs. I find myself praying her body will give out before her mind completely does. Then feel awful for thinking that. The non linear progression is toughest. You get this little grace periods, some approach or meds or treatment gives her a bounce and it seems she's in a precarious balance and doing relatively well considering, for weeks or months. Then as Julie said, a UTI or diarrhea or fall and the bottom drops out and ground is lost and never regained. Usually. You never know what to expect. The mental aspect is so much harder to me, than any physical issues. It robs you of who they are, your relationship with them and history of them. The worst.
My grandma is suffering from Alzheimer's and I'm living with her to take care of her until she progresses enough to need more help than I can give. She was officially diagnosed a year ago, but had symptoms for a while before. I'm guessing she has had the disease for 4-5 years and was diagnosed as a moderate case of it. Thank you for your videos!
I take care of my grandmother with Alzheimer’s & Lewy body dementia. We are in year 10 I believe & I thank God that she is doing as good as she is. (Knock on wood) It’s the worst watching it all. But I’d do anything for her. She & grandpa helped raise me, so as you can imagine, they are my people & we are incredibly close. She doesn’t make sense anymore but knows my name & asks for me if I’m not there. And even though it doesn’t make sense, she’s in there somewhere still. Sometimes she will randomly say things that make complete sense & would be in reference to something you were talking about a week ago & it shows us how she literally was paying attention and just can’t communicate it all the time. It’s crazy. She was on hospice for a bit & then was taken off bc she’s kinda plateaued a bit. But I know her time is coming & I honestly just pray our Lord takes her peacefully in her sleep in the future. Idk how I’ll live without her around but I pray God gives me strength for that too. Love your videos though & thank you for doing what you do! 💜
In Australia our residential care has hospice as the norm so the moment dad went into residential care it was considered hospice and palliative care. He was there for 5 years - needed help with personal care, reminders for meds etc. so there was no transition from residential care to hospice - the staff who care for the whole facility were the same people for end of life. Dad had a fall. He was mobile, almost non verbal, ate screamies for any meal, but end of life care in the last two days just had check up’s and rotating his body, ouch care etc every 2 hours around the clock.
Please could you do a video specifically on vascular dementia, Julie? My mum has this, and while I'm aware that there are differences between it and Alzheimer's, it can be very confusing! Thank you so much for what you do, its so good to hear honest conversations about the one thing none of us can avoid❤
Just found you. I'll be sharing this post with my young adult children. Their father/my husband has Alzheimers. I think he's stage 6, but I know what you've described here is on our future. Thank you.
My wife died of Alzheimer's. I took care of her at home until she reached the paranoid stage and became threatening. Her time in the facility went OK for months until she began to hit other residents. It was a blessing that she lost mobility and had to be pushed around in a chair because she was in danger of getting thrown out for hitting people before she lost mobility.
Thanks julie for putting out this video about Alzheimer’s dementia currently taking care of my mom she’s been on hospice for seven months now she’s on another plateau after a uti infection again she’s been sleeping a lot but still eats occasionally
THANK YOU JULIE AND IM THE HUSBAND THAT LOVES YOU VERY VERY MUCH AND MY WIFE LOVES YOU TOO BUT MY MOTHER HAD ALZHEIMERS AND AFTER SHE HAD IT FOR 2 YEARS WE HAD TO PUT HER IN THE NURSING HOME AND SHE LIVED THERE FOR 7 MORE YEARS AND PASSED AWAY IN HER SLEEP AND SHE JUST DIED BECAUSE HER HEART JUST GAVE OUT BUT SHE HAD A TRIPLE BYPASS SURGERY 20 YEARS BEFORE SHE DIED BUT WE KNOW THAT MY SISTER ASKED GOD TO BRING HER HOME BECAUSE MY 55 YEAR OLD SISTER DIED A MONTH BEFORE MOM WITH SMALL CELL CANCER AND THATS WHY WE KNOW THAT SIS ASKED GOD TO BRING MOM HOME BECAUSE MOM LEFT EXACTLY A MONTH LATER AND MY SISTER WAS AN LPN AND SHE COULDNT STAND TO SEE MOM LIKE THAT AND MOM WAS SO FAR GONE THAT SHE WAS LIKE A ZOMBIE BUT MOM WAS LIKE THAT FOR 7 YEARS OF THE 9 YEARS THAT MOM HAD THE ALZHEIMERS BUT THANK YOU SWEET JULIE FOR ADDRESSING THIS ISSUE TO HELP OTHERS UNDERSTAND WHAT EVERYONE GOES THROUGH WITH A FAMILY MEMBER HAVING THE WORST DISEASE EVER AND WE PRAY FOR EVERYONE ELSE THAT HAS TO DEAL WITH ALZHEIMER’S IN ANY WAY 😭😭😭😢😢😢🙏🙏🙏✝️✝️✝️💜💜💜
Julie, I am new to your channel. I find your videos rich with information and common sense. I've worked in hospice for a couple of years now, and I learn something new from each video I watch. This may seem petty, but your opening credits depict a Caduceus, which is symbol made popular by the military (two snakes and wings). Most of us "purists" in medicine relate more to the Rod of Asclepius (one snake, no wings) as a symbol of healing. My impression is that you are definitely a "one snake" caregiver. I invite you into the club. Thanks again for your wonderful work.
I came to your channel today specifically for this topic. My Grandma has Alzhimers and 2 months ago was found unconscious with very low blood pressure. We thought we were going to lose her. She entered hospice but has rebounded about 95%. It breaks my heart to discover this may be a very long and lonely road for her. She is very aware her memory is bad and when we visit and she asks multiple times how we are related.
I am in a tricky situation, where my mom is in a twilight. We are educated about death and dying, all paperwork is in place, and we give her food and water when she wants it. She still wants it and can swallow, talks to us in the mornings, but we see the gradual, slow progression. She is total assist after breaking her hip. She does need total care now. However, she is still “in there“, with periods every day of engaging with us, and enjoying a beautiful environment that we have here, and two long-term loving caregivers as well as myself. Here’s what’s tough for me right now, beyond the obvious. Mom is in no way vegetative , is often alert, engages with us, has pleasure. But the message I am receiving from a family member who also loves her, is that because mom would not want to live this way (who would), anything being done for comfort care, could also be extending her life, and when I push, it gets down to the food and water. this hurts me. I feel we will know when that time comes because she won’t be able to swallow and she will be sleeping most of the time. She won’t have periods like today, where she is enjoying the beautiful day, the flowers, outside, etc. We are still palliative because she has not qualified for hospice yet. I suspect with my mother, it will be when she is sleeping most of the time. She has a very healthy body. She is still swallowing without aspirating. What I am struggling with is this idea that her continued existence is an injustice to her, because she would never want to live this way, and that, perhaps more sedation, which would lead to more sleeping, thus more decline I guess, would be more humane. And yet I don’t see her continued existence as an injustice to her beyond the fact that dementia itself is unjust. I have felt, as long as she is not suffering, even in this cognitively impaired state, who am I to say her life does not have value. I struggle with this, because of the message I am getting that it would be kinder to look for opportunities to withdraw care as a humane gesture. When I press, that seems to be about food and water. I keep saying, we only give it to her when she wants it, but I’m not sure I am believed, or trusted when I say this. Because we ARE feeding her. She lets us know when she wants it or not in several different ways, and we totally respect that, but because of her tremor and contractures in her hand, she can’t usually hold spoon or cup. But, is often hungry and thirsty, still. We watch for those changes, we see that she is gradually eating and drinking less than sleeping more, and we are following that lead. Believe me, I am not that family member asking for things like feeding tubes or full code on someone like my mother, we have all documentation from the MOST form to the DNR, she is signed up with palliative, who also have hospice as part of their agency and I am told it will be a seamless transition. They review her for hospice versus palliative, several times so far. She’s not quite there yet. since we have all the supplies and equipment we need and regular visits from palliative, I have felt this was fine. And yet this idea that I am somehow responsible for her continued existence with dementia, because we are giving her such good care, is tearing me up a little bit. It wakes me up at night. I don’t really believe it, but it is haunting me because there is someone in the family who does think this, i suspect. And yet, I am the only one actually here, along with her caregivers, and this is acknowledged. There is support for that. I truly believe that our primary caregiver, who has cared for many dementia, patients throughout their disease, and through their death, will know. We talk about it. When mom has a bad day, we think, is this it? And then, my mom, being the bad ass that she always was, and is, bounces back the next morning. Less so all the time, to be sure, but we feel we are following her lead. And yet, it troubles me to think that there is an idea that the thing I am doing, the level of care we are giving, is perhaps seen as an injustice to her, because it is prolonging her existence. I think I know the truth of this, I don’t think we are doing the wrong thing, I believe we are following her lead in an educated, and informed way, but how can I speak to this twilight period. She is comfortable and content, but yet of course she would not want to live this way. Has anyone else felt this or received messages like this?
I have not gone through what you are going through but i think you are doing the right thing. I personally could not live with myself if my elderly, bedridden mom asked for food or water or any basic care and i denied it. To deny a thirsty or hungry person food or water seems heartless and cruel to me, even murderous. The body will shut down at its own pace. Let nature take its course. She will either pass without going through the not eating process or gradually her appetite will become less and less as her body prepares to pass. Either way it is important for you spiritually, emotionally and psychologically to know you did everything you could to make her last days as comfortable as possible and if that means feeding her when she is hungry then you can have a clear conscience when she goes.
I agree totally with the reply. I would hope if I'm still able to communicate hunger and thirst that someone would respond to that. Follow your heart and you'll have no regrets. I can't imagine the regrets you will have to live with if you don't. The fact that she has you looking out for her is a godsend.
Thank for this video and all you do. My mom was diagnosed with alzheimers dementia 5 years ago, she was not taking diabetes medicine and had delirium from a bad uti infection. We were forced to make a decision to put her in a nursing home as she was very combative and not caring for herself. She has end stage kidney disease and had a fall a few months ago she's went downhill and is barely verbal or awake. most of the day now. You are correct about the up and downs and plateau.. Its been a roller coaster very hard to watch her go down then get hope when she improves for awhile then another episode makes her go down hill fast.
@@michellechavez2423 Your welcome. That was the toughest decision my sister and I made. Even though I lived with her as her caregiver and was her health proxy and Power of Attorney, my sister who lived an hour away was involved in the nursing home move. and other decisions. When your own health starts to suffer, mental and physical, you know a decision has to be made. It's been 3 1/2 years and I'm still processing it. Of course, the world also went crazy too as we all know.
@@alcambrola2834 so sorry for what you and your sister went through. It is a hard decision, my mom was a nurses aid and never wanted to go there but we could not give her the care she needed. My brother is power of attorney but involves family with decision making. I have guilt over not being able to care for her myself, I am disabled and just could not do it. It was so terrible being seperated from her because of restrictions during pandemic, she went down hill alot from isolation. When our loved one is in a nursing home or in hospice, such a messed up time not being able to see them when they need it most. It was a very heartbreaking time for many. My heart goes out to you as well.
Currently caring for my 95 yr old mother in law at our home. Although she hasn't been officially diagnosed, we are confident she has some form of dementia. She has many of the behaviors and symptoms. We are in the process of getting her evaluated by a specialist. In the mean time, she fell several wks ago and has been to the emergency rm and was given lots of tests as a result. She is losing weight rather quickly and i can tell she has less and less appetite as time goes on. Her vitals are all pretty normal but she currently has a uti and we are giving her antibiotics for that. Her memory is really bad. I mean like her short term memory is extrmely bad and so is her long term. Her reasoning abilities are gone. She is confused the most after she wakes up from a nap or from sleeping all night. I got one of those buzzers for her to keep with her in her room when she needs to use the restroom . It chimes in our bedroom but she often forgets to use it and goes by herself with her wheelie or not. We are afraid she will fall.again. She wears a diaper because of a previous colon cancer surgery but now she hardly knows if she has pooped her diaper anymore without us checking. She was 130 lbs when she came to live with us at the beginning of the pandemic. Now she is about 105lbs and dropping weight like i said faster than ever. We are very concerned about her and we are trying to learn all we can to help her. She has physical therapists come to 5he house twice a week to get her legs stronger but i don't see much progress tbh. This is the toughest challenge my wife and i have ever encountered as a couple. We do not have children. Thanks for all your information. You are a big help to us and many others i suspect. Take care.
I wish I had met you and/or nurse penny in October of last year 😢 I just lost my dad on March 1st of this year. Dementia, CKD, diabetes, CHF. It was a lot. And it would've been helpful knowing thing like this ahead of time instead of along the way. October to March of this year was very tiring and emotional. And it's still emotional 😭
This is unbelievably helpful and applicable to Lewey Body Dementia, from what I'm experiencing as caregiver for a family member in decline. Thank you so much!!
As weird as it may sound to some people, bowel cancer was a mercy for my Granddad who was suffering from Alzheimer's Disease. He went back to WW2 in his mind & would wander the nursing home trying to escape enemy soldiers. Had he not gotten bowel cancer, he would have suffered so much longer. As a Christian & knowing my Granddad to be a Christian, it was a relief that we know he's now in Heaven & no longer suffering. Of course, we miss him terribly even two decades later, but it was such a relief to know he was no longer suffering.
I was a caregiver for the sweetest soul on earth she came on hospice in September after being hospitalized for aspiration pneumonia. She had down syndrome and then vascular dementia. She then became bedbound wasn’t until November that we thought we were losing her and she would bounce back. It was like rallies the hospice nurse we had said she never had a patient like her but the last time she went down and basically never woke up it was Christmas day she was awake not really eating and then on the 26th. She became comatose passed on the 28th. I’m gonna say it was a beautiful experience as I was the caregiver that was on the minute she passed away she was so angelic so perfect she looked 30 years younger. I miss her something awful she was just buried on 6 January but the piece that filled that room on the 28th was undescribable. I felt she suffered, though, even though we were doing morphine and Ativan, her breathing was so horrible to watch and hear down syndrome, and the dementia was horrible to watch because she was such a loving soul
And watching you for the past year just to educate myself from my own time when it comes helped me greatly when I was caring for her the hospice nurse is that she had actually watch you and when I tell him that I watch you and told him the things that I knew or whatever they were pretty impressed
My mother was put on hospice 2weeks ago. She has Alzhiemers and fell and broke her femur at Christmas. She is at home She sleeps mostly and will sometimes eat, they did place a urinary cath and giving prophylactic antibiotics to prevent infection. It's such a terrible disease my dad is heartbroken 💔 Thank you for this information.
My maternal aunt resisted changing her lifestyle to accommodate her waning abilities as she aged. The day came when she fell in her apartment and was rushed to the ER. That's when I finally got help from the medical community to have her deemed incapable of caring for herself due to dementia, and brought her to live in an assisted living facility in my town. While cleaning out her apartment, I discovered that she also had schizophrenia, which put me in a moralistic bind, deciding whether to tell anyone, which would put her into a position of taking psychotropic drugs. I eventually had to do so, and managing her medications, complicated by her dementia-fueled resistance and paranoid schizophrenic-fueled distrust of each pill, made caring for her exhausting. She progressed just as you described here until she died, eleven days after burying my mother, who died of the same disease.
I really appreciate your videos! My mom has severe dementia and lives in a memory unit. We have been watching the progression of her disease for years. she lived with us for a couple years but then had a fall and after that she needed more care than we could provide hence the move to a memory unit. We wonder what the rest of her time will look like but it feels good to be familiar with the natural steps and to not be afraid.
You pegged it absolutely correctly. My husband has Frontotemporal Dementia. He is still midrange (seven years in) but already has swallowing, incontinence, and balance issues. This is the absolute worst way to die from my perspective.
Thank you for highlighting Alzheimer’s. There’s so little information for the very end stage. I am so grateful. My mam has had Alzheimer’s for about 19 years. She is non verbal and immobile now.
Iv watched your channel and luv all your advice.was lucky enough to be with my brother 🙏 ❤️ when he passed.its not near as scary if u know what's coming. From the frozen praire of South Dakota peace ✌️ ✨️
You described exactly what my uncle went through. Fell in January, had an infection, was bed bound, had a hard time speaking. He passed two weeks ago today. He was only 73. Thank you for this informative video.
My mom lived 10 years. You described perfectly the reality. So hard on mom and our family. I was totally exhausted after she passed. Just recently I started to remember the good days. This disease takes everything away.
Oh, does it ever. You completely have my empathy.
We were so overwhelmed by relief after Dad passed that we forgot to mourn, now 14 months later, the grief process is in full swing. We miss him so much.
My Mother was diagnosed with Alzheimers 11 years before she passed in 2016. The last 3-1/2 years were rough.
At the time I was speaking with a friend whose Mom was dying at around the same time and he was telling me about some of their conversations.
I mentioned to him that he was fortunate that at least his Mother could tell him where she was hurting.
My Mom was well past that point.
Now I tell people to contact hospice to do an evaluation to see what stage their loved ones are at because these nurses understand and know of resources that most people aren't aware of.
We had a wonderful hospice group called Care all in middle Tennessee and they helped me and my family tremendously, to us they were Angels.
Julie thank you so much for all that you do!
you have my condolences for your Mom. Staging the disease is a very good idea -- thank you for this tip. My Dad has since passed, I wish we could have done this for him -- it was awful, mostly for him and my Mom. It was so difficult to watch.
Mom is on hospice with Alzheimer's. It is so incredibly painful to sit with her and she doesn't move, open eyes or try to talk. Your videos are giving me explanation and comfort in knowing what to expect next. Dad is really suffering. After 72 years he is about to lose the love of his life, his dream girl...
I think I’m going through this now with my mom. It definitely feels like what you’re describing
Blessed are those who pass away quickly. RIP Dad 7/25/23
Dad passed 4 days ago from dementia. Death is such a natural thing - but we have fear. I watched hospice nurse Julie’s videos to prepare for dads passing - started watching last year.
It took away the fear and shock, replaced it with empowerment because I saw the small changes in breathing - face - cheeks, skin etc. My sisters didn’t watch - they couldn’t look at dad the first 24 hours.
I was rubbing moisturiser in his skin, putting on special lip balm etc. I slept in a bed next to him and held his hand all night.
They DO feel us - dads breathing changed and heartbeat faster when we were holding his hand.
There were moments - even an hour when I saw dad connect his eyes - it was beautiful. Like seeing him pre dementia! If I wasn’t there I wouldn’t have had that beautiful moment.
MORPHINE MAKES THEM HOT - dad was hot so we had a fan in his room.
The DEATH RATTLE does not sound the same for each patient - dad had a lovely soft rattle - heard it in the room but not down the hall!
We all want a good death, but it was comforting and empowering knowing what to expect and I would happily sit with any dementia patient as they transition to death because it was such an honour to be with dad.
Be honest - tell staff you have watched hospice nurse Julie, I did and the residential care dad was in watched a couple of videos with me because they loved how calm and prepared I was.
Dads passing was peaceful, the sadness came when it’s confirmed. Before that, I was calmly reassuring my sisters that breathing can stop and restart - it did. Then I reminded us all this is what dad wants, a peaceful death and we are happy this was his experience.
My sisters gad been so scared, but I told dad I love him, when he lets go of my hand he will be holding his mums hand… it’s a beautiful place and he doesn’t need to feel scared, it’s ok to go.
I am broken hearted dad has gone but relieved he no longer battles dementia. My sadness isn’t in his passing, his memories and personality went a long time ago - I miss touching his hands, face, kissing jus cheek…..so my friends when dementia has taken everything but their breathe, hold the hand, moisturise it, put their lip balm on and in those moments, be present and make memories by caring for your dad and holding his hand and feeling his skin so it will always be in your memories- no regrets xx
I am so sorry about your Dad. It's such a hard disease for the sufferer and family to endure. We went through it, it's such a cruel disease. I'm glad that you felt more prepared.
I miss my Dad -- d. o. d. Jan 24, 2022.
My condolences to you and your family. That was as beautiful a story as I could've hoped for in such a sad circumstances. Bless you for preparing for that time and that moment and being such a loving child ❤️!!
I miss hugging my Dad, my arms and heart ache for him. I miss the conversations and the laughter, what made my Dad who he was, completely evaporated. Towards the end his spirit faded away. I'm so sad, when I think of the last time I saw him, but the good memories are slowly rolling in, but it's still intense mourning right now for Mom, me and the rest of my family.
@@papermasonprayers for you. It will get easier but you will never forget him. He will always be with you! Daddy has been gone for 24 years but I think of him fondly every day. 💙🙏🏻😇
@@rhondathomas7952 Thank you. I'm glad you can think back on your Dad with fondness -- remember all those days you had with him. Now all the events in my memory take place on sunny days, it seems.
I was a long term care nurse for 35 years before retiring. Towards the end of my father's life he developed alzhiemer disease. There was always one story he told me over and over about his service during the Korean War. His ability to play the organ made the difference between his going to the front lines to fight, and being assigned as chaplains assistant. Mom would try to shush him. I explained to her that story was very important to him, and as long as he was able to tell it I wanted to hear it from him. It was very hard on mom. I did all I could to help her understand the changes and we kept him out of the nursing home. Through it all he never forgot Wheel of Fortune. As the years passed he quit solving puzzles, then he could only figure out two or three letter words and then just guessing a letter or two. Even when he was barely able to form word he watched the clock when it was time for the "Wheel". The end came when he fell and broke his hip. The course from there was completely predictable. The only comfort is knowing he had a close relationship with the Lord and he's in heaven now playing the organ for a Heavenly choir.
Linda, you reminded me of my grandma. She had Alzhiemers for a long time before she passed away. The one thing she could do for the longest time is play the organ! She even became the poster girl for the Adult Day care facility she went to. She lived with us as teens , then went to live with my aunt in Oklahoma. There was a day when my aunt told us grandma flushed her teeth down the toilet lol! My mom ended up with dementia as well and we lost her last July. We focus on the good times with her. Even with her dementia, we tried to get her out and have fun. I'll miss her until I see her again ❤
You know, my husband occasionally repeats himself. It's ok, though. He's a wonderful storyteller!
@H&A M you made me smile when you shared how your grandma played the organ. My grandma also played the organ, which is why my dad and his brother learned to play. My dad took it a step further and became a classically trained concert organist. He was a brilliant and talented musician. He played the organ in church my entire life. He played the organ at my wedding. There was no one who could hold a candle to his ability. As his dementia took hold of him he lost his ability to play the organ he loved. His Hammond church organ is in the formal living room where mom still lives. I can still hear the beautiful music. Sadly neither myself or my sister play. I do have a tape of my uncle playing Bach, and Bethoven on my grandma's ancient Hammond organ. It's almost like dad's playing as their styles were very similar.
My mom has it
Sux I'm the only one taking care of her and we get no brakes. Been years. This is tough cuz she wants to leave all the time. She has gotten away b4 and the worst things happen to her people suck. I fail at protecting her. Can understand why this happened but it is what was delt to us so will take it as that
OMG ... sounds like my Dad, but the chemo did something to his brain. I'm so sorry for your loss; will add your Dad to my prayers.
I was a caregiver for my mom for 10 years. In 2009. she was functionable and could bathe herself and even be left alone for a few hours. Her meds were monitored, and I used to kid and say I was her personal GPS system. In the winter of 2018, Presidents Day weekend to be exact, she was hallucinating and even speaking in a different voice.
I brought her to the hospital ER and the doctor explained the same thing. He got a piece of paper and drew a horizontal line, then went in a downward motion with the pen. It was like she went off a cliff. She rehabbed at 3 different facilities for 37 days with new meds and adjusting the others. When she got back home, she was now incontinent and had to be monitored constantly and a totally different person.
I held on for another year and couldn't do it anymore. In July of 2019, she went into a nursing home. She went downhill pretty fast from there. She had lost her ability to swallow and was "pocking" her food and was put on a puree diet. In December, the nursing home had a mysterious virus that hit everyone. There's a lot more to this story that would make it too long. In the last week of December, she had Sepsis and pneumonia and sent to the hospital. Her kidneys shut down and she passed within 24 hours. The memory I cherish, is that even though she had Dementia, up until her last day, she knew my name and that I was her son. Thanks for what you do.
@@claudialupper Thanks.That happened with my sister. She would tell people she was someone who worked with her. Then she would catch herself and correct it. As difficult as it was, I would do it all over again. Hang in there and God bless you.
First im sorry for your loss. And I admire you for taking care of your mom. I’m a live in care giver and I’ve seen the person change like a flip of a switch. Has gotten more nasty come the evening time. I know it’s sundowners. In all honesty I’m just not equipped. I will be stepping down and departing from this role. I can’t handle it. It’s taking over my life. I’m exhausted by the time she heads to bed which is about 6:00. I’m constantly re directing her. Her husband is 83 and he tries but he has his own issues. I’ve been doing this since August of 2023 and I think it’s time to quit. It’s ruining me. I’ve suggested to the husband that since she wanders at night it’s dangerous and should be in a facility if she wanders then there is staff. I’m 24/7 but I can’t I have to sleep myself. It’s not easy. I think it’s emotionally taken a toll on me. Mentally I know for sure. To those who care for someone with dementia God bless you.
It's 10 months later and I just got your message now. Thank you for your kind message and bless you also.
Thanks. It certainly did burn me out and I know what you're going through. As I stated above, for years my mom was pretty functional and quickly downward spiraled.
I knew it was time to stop caregiving when I would get angry, and she would be terrified. At times it was comical. At night I wanted some down time, and she would want a piece of candy or complain about a body ache. All she had to do was look at my face and tell I was getting pissed. She was pretty mobile on her feet and run away from me. She would run to her favorite chair in the living room and actually put her hands up to her face like Macauley Culkin In "Home Alone." That's when I knew to back off and leave her alone.
I had some counseling during caregiving and some after then it stopped when the pandemic hit. The counselor told me I needed to stop beating myself up as getting angry is normal and you can only take so much. I knew then that she needed to be in a facility. Hang in there and hope everything works out for you.@@ConversationsWithGodST
@@alcambrola2834 thank you so much! You actually made me feel better. I do get angry. I felt so much guilt. At night she will go to her bedroom she will come down and ask for gum. She chews gum like I’ve never seen before. She was diagnosed about 10 years ago and I’m seeing her getting worse. About 3:00 she changes. It’s so hard. She closes blinds and checks doors to make sure they are locked at 4:00. Her and her husband have been married going on 60 years. He is having a hard time coming to the conclusion he needs to place her in a home. Once I tell him I can’t do it anymore he will just claim he will take care of her. It’s just a complicated situation. I think over the next few months I’m sure he will start to see her quickly go down hill. It’s just too hard for me. Thanks for listening. You did your best and God bless you for caring for her as long as you did. Take care
I am a grandson and currently my grandmother fell this past weekend and is bed bound now. It’s extremely hard on me. We are very close! I’m heart broken! I got her to eat chicken noodle soup today and write ✍️ a letter of my name. I did Christmas cards for all the family this past year from her in her hand writing. I’m not ready no one ever is, but their isn’t a grandma in the world like mine! She’s the best! ❤
You are a very good grandson. Jesus Loves You So Much. Praying for Your Grandmother🙏🏼❤
@@lisakrajewski4699 thank you and yes he does! My grandmother witnesses to everyone, I’m so glad she is saved and we just found out today my spouse lost her job today too! When it rains it pours. Tough day! All the prayers you can send my way are appreciated. 🙏🏻 ❤️
Thank you for posting this! Brings back memories of when my mother went through ALZ. She (we) suffered through this for at least 11 years before she finally secumbed from her ALZ. After she passed, some people were wondering why we did not show much grief, it was because we grieved all the way along and her death was relief from all her suffering.....
That happens. I had a wife of a former tenant tell me a year after her husband died of a stroke and had dementia that she never really grieved for him after the death. I reassured her that it’s normal. You lose them little by little so a lot of times you do the grieving for them while they go through the disease and by the time that they pass it’s not so much sadness but happiness that they are no longer suffering. I like to think that they go to heaven and are doing all the things that they could no longer do and eat all the good food. I imagine them running skipping and doing flips.
Blessings to you❤
My mother clinically died after 15 years with dementia but was actually dead after 10 when her memory & experiences were gone, the things that made her a unique person. The last 5 years she was just a shell & didn't even recognize her own children. Frankly, I rather die from being hit by a bus.
I’m a nurse here In the UK and currently laying beside my sweet Mama who Is getting ready to transition If not this evening, then tomorrow I believe 💔 I have had to explain to my dad that she is refusing sips and that needs to be respected, although it is heartbreaking. I think you’re just genuinely amazing for sharing and highlighting the importance of how dying well matters. This normal process needs more attention as It’s important as being both ❤️
Gosh, do you know or what? My mother passed away at around midnight today. All these steps are exactly like you said. It has been very difficult. I know my mom is now happy & whole!❤
Very sorry to hear your Mom died last night. Losing parents is so hard ❤
My condolences Sandra on the loss of your Mother. She's at peace now. And I hope you will be too
Thank you Jennifer & Tory. I believe the journey getting to the end was the hardest thing ever. You slowly lose them & at times the most simplistic things are the most difficult. But at the same time it makes the passing easier. We (my mother & I) prepared by having discussions about when it would be “that time”. I’m really grateful that she passed in her sleep so very gently. I’m just so very grateful that SHE was the one that was given to me for a mother. 💕
My mother was diagnosed with Alzheimers in January 2020 though there was signs of the disease about 18 months earlier. My mum entered high dependency care in May 2021 and passed away on 10 November 2021 at age 75. One of the most difficult things to watch as her son and ultimately her body was so dehydrated as she couldn’t eat or drink during her last 6 weeks or so. She didn’t know who I was for her last 3 months which was hard. Thinking of her today on Mothers Day 2023 ❤
I took care of my dad for almost 4 years.
He died, at home, last May.
He was on home hospice for 8 months.
It was, my dad, me, 2 Medicaid HHA and a very good friend.
What we all went through all together!
I have stories to tell.
Please respect all people who come to help!
Right after he died I found this channel.
Wish I had found it sooner!
The advice here is GREAT!
Love the channel!
4/29/23
My mother is currently in LTC, and is very near the end. The staircase comparison you described has been exactly our experience. She has not recognized me in a very long time, eats very little, refuses fluids, is wheelchair bound & unable to communicate. Visiting is heartbreaking, she can’t keep her eyes open for any length of time. I’ve done all I can, but still feel guilt that it isn’t enough. My mother ceased to exist long ago, I now visit an empty shell that resembles who she used to be. It’s devastating.
My mother's situation exactly. It's painful to even visit her. Hard to watch her die so slowly.
Do they know you're there visiting
@@catherinerosa-baker2937 I think my mother thinks I'm a stranger who poses a threat to her. Or that I'm a caretaker who's there to roll her over and change her diaper. When she wakes up long enough to see me, she looks terrified and screams, "No! No! No! I don't want to. Never! Never! Never!" Then she falls back asleep. What good is it doing either one of us to visit her? The only reason I do is because my father expects me to do it out of duty. And so that he doesn't have to face it alone. Misery loves company.
@@culturematters4157 This is the worst part of love -- not seeing purpose in what you're doing. But it's also the best part of love, because you do it anyway. You're also respecting your Dad's wishes -- also great love.
Our family decided to put Granny in a nursing home when she was unable to be left alone. She might go out and get lost or burn the house down when cooking. She was 88. She absolutely hated being in there and complained about all the old people. She was the oldest one in there 😂 One day, after breakfast, she went to her room for a nap, as usual.... and she died. Just like that! I would pay to die that way.
I worked in a locked facility for people with dementia whose resulting behavioral disturbance had gotten them booted out of ordinary nursing homes. By the time you get them in hospice, they aren't doing anything at all, they're in a quasi-vrgetstive state. But I've been kicked, hit, choked, punched, cussed out, had full diapers flung at me, you name it. I quit working when my own moms dementia progressed to the point point that she needed me to care for her, which I did, full time, until she died of aspiration pneumonia. She had both Alzheimers and vascular dementia, and the vascular issues meant that she still was talking somewhat coherently,.recognized me, and was able to express her wants and needs when her.body gave out. Thank God for that. We were able to share music and watching a favorite concert on video just a few days before she died; she was also "with it" enough to receive the Sacraments before the final spiral, which gave her comfort.
This describes my mom 100%. She followed that progression...... I had to figure it all out on my own and am glad you are here to help folks out now! I realized too late that my mom was "packing up" to move (?) and I'd see where she was putting clothes, jewelry, personal care items wrapped in tissue and shoved in shopping bags piled up on her bedroom floor. I'd empty it all out and put back in drawers and closet. Sadly somehow I missed her rings and fine jewelry she'd rolled up in Kleenex which either I or the home Heath aids tossed not realizing mom had wadded jewelry in. It's a good idea to be wary of your loved ones actions as they tend to "hide" or stash things..... including food and medicines. We discovered my mom had been shoving used depends and pads behind stuff in her bathroom closet. The smell alerted us to the situation. Didn't confront her just made sure I checked the closet every day. It's a confusing and ugly disease.
As an RN, who too worked as a Hospice Manager, Thank God for you in educating the public and others in hospice care. It’s not always what you’d think as depressing and sad. I learned a lot from patients in how to die with dignity and accept their death. This is a niche of nursing that is often “taboo” that people don’t want to hear about death and dying. What you offer is SO important and educational for those in hospice and ready to enter hospice. I find your videos comforting as well as educational. I’ve come across patients that when they hear the word hospice that evokes a negative connotation with death. Your videos enlighten all of us just how wonderful a service hospice is and what help and support we can give the family.
I can’t stress enough that what you provide is so necessary in offering answers so many people need. Thank you, Julie! ❤
May god bless you for the work you do and the knowledge you pass along to many many other people you will never meet. You are truly a gift from God.
Thank you so much
I'm my Moms caregiver..I work full time Sitter during day .I do the rest
It A 24 /7 Job..but when she has Clarity it WOrth the Struggle..I remind My self of the Scarfices she made Raising 4 Children..One Kidney and Crones ..She's such a Fighter...she bounces back All the time..
My mother just died on April 28 from Alzheimers. She was first diagnosed in 2018 and her trajectory was very similar to what Julie explains in this video. I thought I was prepared for her death but I am still in shock that my mother is no longer with me and that I have to go on without her. I think the only solace I have is knowing she is no longer suffering. I love you Patricia you were a great mom. R.I.P.
Julie, it is my greatest fear... My "opa" had this and he lived until his 72 by himself. He went into an LTC facility where he went through the stair steps. He experienced WWII in a worker's camp and this came back to him frequently and he got so violently mad during this period, most of the time we did not know what to do, should we visit him or not. My dad was at his wits end as he wanted to help him, but he couldn't. Opa passed away at the age of 83, he went fighting and screaming, it was horrible. I was only 14 at that time but I remember it so very well. We had peace with it after the fact, no more pain and agony.
So glad you’re here, hope my channel helps!
@@hospicenursejulie why do we grow old and die?
He went fighting and screaming?
That's not the comfort that I'm hearing hospice gives dying patients. I'm confused
@@catherinerosa-baker2937 LTC facilities aren't hospices so that's probably why.
God bless you nurse Julie. My father is 83, it's his 10th year since he was diagnosed with Alzheimer's. It has been very difficult for my loved ones who are his caregivers. It's very hard seeing him decline. Thanks for this video, it will be a great help to us.
I just lost my husband from Alzheimer’s less than a month ago. He was on hospice after a trip to the ER with severe rectal bleeding. His blood work was off and he also had blood in his feces. He could still take tiny steps at that point with help. He started to pocket his food and then eventually refused water and food and was bedridden. He lived for 5 days without eating or drinking anything. Hospice was with him at memory care the entire time he was transitioning. They kept him comfortable, clean and so peaceful. I have so much gratitude for hospice care. He lived with Alzheimer’s for 8 years before I had him placed in memory care on January 15th and he passed on May 18th. 💜
My mom was diagnosed with Alzheimer’s in 2017 at 87 years old. She has done exactly as you described it-slow and in steps. Last June she was hospitalized with infections and from there was admitted to hospice care who accepted her with the diagnosis of cerebral atherosclerosis. She not only came out of the hospital but she got and survived covid. She gained enough strength to go back to daycare. She’s had more utis since coming out of the hospital but with antibiotics she has each time gotten better. In the fall she started falling so she had to be in a wheelchair. By December she was bedridden. Today she is still in hospice which makes 10 months. It has been very hard as my husband and I care for her in our home. She now has bed sores and I see more of a decline. So Alzheimer’s is a terrible disease that progresses very slowly but very definitely. Thank you and Nurse Penny for all your help in understanding the hospice experience.
Thank you for this! My daughter and I love to watch you but we’ve been so perplexed since a few times Grandma has been through all the signs that her death was imminent and then she bounces back like nothing ever happened and at first we thought it was the rally but no she carries on! She just didn’t seem to fit the pattern you teach us about. When she does bounce back she resumes eating and she doesn’t have too much trouble with that. She chews very small bites for a very long time but doesn’t choke.
Sometimes she’ll sleep for days waking only for food. This week she has a day where she was so lucid it was like her old self. She remembered names and places and time frames but it lasted only about 5 hours and then while she stayed attentive and communicative she started slipping and then she slept for about 48 hours and returned to the state she’s been in of not talking much and being confused and acting somewhat babyish. It’s remarkable the ups and downs of if. We’ve learned not to get too upset over the changes. We just thoroughly enjoy the moments when she comes back to us. She is going to be 97 in August of this year (2023)
Thank you Julie 💕 My mother had dementia and died alone in a nursing home . I live overseas , so could not be with her . Thank you for explaining and all the good work you do - God bless you 💕🙏
My dad passed away in 1986 from pneumonia as a result of Alzheimer’s. He was only 66. Now my sister is in a memory care center and from your description, I now know she is not in the end stages. She is declining so quickly, tho. She has had signs for many years but was only recently put in the care center about 6 months ago. This has been the longest goodbye…I miss who she was so much 😢❤
Thank you so much for these youtubes! I lost my husband to Alzheimer's, COPD and emphysema last June, and have grappled ever since with his slide downhill to death. You have clarified so much of what happened for me! The doctors were all focused on "fixing" various symptoms, and I did not realize that most of those were end stage progression. I wish I had seen your videos a year ago. Still, your explanations have helped me quite a bit! ❤
We are watching my mother in law die with Alzheimer's. I have watched your videos to educate myself and know what to expect. She is 96 years old and we took care of her for 6 years. She has been in a nursing home for a year. We are seeing many of the things you describe. Irregular breathing, staring, she can't swallow liquids, her lung collapsed and now she has an UTI Infection. we are 70 and 71 years old and it has been hard to watch her decline. Thank you for your videos. We have been told to expect 20 days and are praying for God to take her to her reward in heaven as soon as he sees fit. This disease is so hard on everyone invoved.
Watched both grandmothers go through this for 10+ years. Now my parents are getting up there in age and I fear for them as well, so I am mentally preparing myself now for the long hell that awaits. I myself am going to get tested this year to see if I have the gene for the disease. I am married, but no children, so I need a plan in place to make sure I don’t suffer like I have seen others go through. Even if it means taking my own life before it’s too late. I work in the world of nursing home care. The care for the elderly is at its lowest. These people are not getting the care that they worked their whole lives to have. It’s shameful and I will not be a victim of it. This disease slowly takes away every ounce of dignity you ever had and leaves you an empty soul in a dirty diaper with a recurring UTI because no one at the nursing home properly cares for you. Have plan B in place. This is not a road you want to go down.
Going through this now with my mom. It is awful. I have great empathy for anyone else going through this and the deepest respect for nurses and aides that are helping along this journey.
A family member was just diagnosed with dementia, I’m just trying to learn whatever I can to try to help everyone make the right choices concerning the type of care this person will require.
My mother died from Alzheimer’s. She was sick several years, and my dad and I were able to care for her until she wouldn’t get out of bed. She went to the hospital until we were able to get her on hospice. While there she began to develop a bed sore. We moved her to a care facility where that got much worse. They had to clean it daily and it became very bad. She wasn’t verbal at the end, but she would cry out in agony when they treated her. Fortunately, she was only in there for 30 days until she passed. What I found intriguing about the disease, was how she went along on a plateau for a while and then one day would “fall” off and lose some ability almost immediately. It was like you could look into her brain and see what area was being affected. Especially notable was when she lost some of the forebrain. She just started cursing when she had never done that before. It was also interesting that when she was placed in the care facility, she confided in my nephew that she would only be there a month and she died exactly 30 days later.
Julie, my sister’s husband is dying he’s been sleeping 1819 hrs. a day. He’s with hospice and this was a tremendous help listening to you. Thank you.
The stair step description of decline is very accurate. We try to have Mom do as many of the little things that everyone has to do in getting dressed. Like buttoning her shirt or zipping up her coat. But even that is starting to be too difficult for her. We are very closely watching the progression.
I enjoy her vidéos. I’ve been a Hospice volunteer for 11 years now and have been with patients and had to watch their decline. But it was an honor to interact with these wonderful people.
Thank u, thank u. My mom was in memory care 1 year 10 months. Last week the dr. called on Tuesday to ask if it was ok to put her in hospice care, the hospice nurse called on Wednesday to say she was so much worse than the day before and she died at midnight that night. I have to say she finally looked at peace, she looked like she was sleeping and her face looked angelic. It is a horrible disease and I hope no one has to ever go thru it. Finally rest in peace Mom.
We're on the stairs. My mom has had dementia for at least 15 years. Stroke four years ago, thought that was it. Stroke again two years ago, bounced back. Fall last November, really injured issues with blood thinners, slow downhill with all the other fun stuff since. She had another fall yesterday, not hurt, but it is obvious that she is further into her decline. It's so hard to deal with. I have lots of support and love your videos.
I (and my family) are in the thick of this right now. Mom has been homebound for 2 years (sent home with hospice, COPD, Asthma, she had a pneumo-thorax but she is high risk, and DNR, so nothing they could do for her). Well, here we are 2 years on. I had to call an ambulance for her a few weeks back - dehydration, potassium treatment, low grade pneumonia, still traces of UTI after 2 round of Bactrim, extreme back pain due to fibrosis from being mostly bed bound, etc. My Dad is elder and no longer able to caretake, so we made the tough decision of assisted living/memory care. I wouldn't wish this on anyone. I saw my Grandmother go through this, totally different when it's your own Mom. She begs to go home, but she needs assistance with everything. She's resisting eating/drinking/taking meds. I'll be honest - it's such a non-quality of life I wish for her quick process death, on her behalf. She's only 74 but seems like a 90 year old. Super tough process, and I am struggling with the facility in the way they are handling her.
My mother has had Alzheimer's for 10 years. The past fortnight I was preparing myself for her death as in this month alone she had covid, repeat UTI's, didn't eat for 3 days and barely eats and drinks anyway. She collapsed onto the floor at 3 a.m in her care home and was put on observation for 72 hours, she lost a lot of weight, her hands and fingers were blue tinged, she was gaunt and lethargic and is now in a wheelchair. She has also been left with her arm constantly shaking after covid. Now she's eating a little although still not enough, the blue tinge on her hands is fading and she's not as gaunt. The roller coaster of emotions drains the life out of me and I'm left exhausted by it. I nursed her myself for 9 years and she's been in care for almost a year. It's hellish watching your loved one lose their mind and identity. My visit the other day had a carer say to me it's comical listening to the alzheimer patients talking away. It may be comical to the carer, it's far from comical for the family. Carers only know these people when they are ill with the disease, they don't know the real them. We've watched our loved one's brain essentially die, their persona change and their dignity lost...there's nothing comical about it. Your description of the stairway, I've never heard before, but it's a perfect description of this disease. It is torture and cruel.
Finding their behavior comical is probably just a way for the caregiver to cope so they don't go crazy.
Great to see everyone’s stories! Having been a carer 13 yrs so far, have found the journey quite lonely, as family/friends who have not experienced dementia world simply avoid the conversation. Reading all the comments here much appreciated!
My husband was diagnosed abt a year and a half ago with young onset ALZ. It is quite different in how it presents, so at first we thought it was vision issues, but then when he stopped being able to read numbers (he worked in finance), we knew something more significant was at play. We have been told young onset progresses more quickly. We have a 7 year old and I just hope that some of the amazing progress happening in this disease favors our timing. Or, at the very least, we have enough time to create good memories while we say this long goodbye. I never imagined experiencing something like this in my 40s. It is brutal and heartbreaking.
I really appreciate your videos.
My mom died 7 weeks ago from Alzheimer’s.
We were fortunate. Mom was pretty functional until 2 weeks before she died.
She was so confused and terrified. She didn’t know who my husband or I were. She knew our names but not the relationship.
She was extremely agitated. I sat in front of her, holding her hands, looking her in the eye, and breathing slowly so she could copy me.
I asked her what hospice was. She described to the letter what hospice is REALLY about. I then told her she was a hospice patient.
Two days later she complained that it hurt to go potty. We got her on meds immediately. She started feeling better physically, but she didn’t return to the level she was at
I knew it was the end.
Today would have been her 90th birthday.💔
My mom, who is in end stage dementia, entered hospice a week ago. My dad is caring for her at home with hospice help. In just a week's time, she rarely says a word, is bedbound, and is denying food. My grief comes in immense waved. If she won't eat, how long will she have?? This is agonizing. Thank you for caring for our loved ones.
My mom had a year of crying, walking the floors crying because she knew something was wrong but didn’t know why. She begged for something for anxiety which no one would give her. Then she refused meds and doctors. She went from being aware to one year later woke up (after months of being combative, locks on the door) hallucinating and in two weeks, gone. I love her so much. My sisters is passed so it was just she and I. It wasn’t until I finally forced her to go to UNT. The doctors there are some of the best there are for dementia. She was at stage 6. Out of 7. They thought it was maybe Alzheimer’s mixed with vascular dementia. Her sister 8 years younger died of Lewy body 3 months after mom. I sure hope this disease doesn’t wipe us all out! These disease are terrible,
awful and excruciating to walk through. My mom was so beautiful and I miss her every day.
Julie, you are wonderful and beautiful. I loved watching you speak
Hospice nurses are Angel's. My mom passed away at The Landmark in Vernal, Utah a year ago. Those nurses were so kind and compassionate to the end. One nurse wouldn't leave her side, even when her shift was over. She fell in love with my mom. Mom gave indications that she wanted this nurse around her because she was scared. You're very direct in your phrasing. You sound just like my wife (40 year RN). You put your clinical business face on and do your job. I'm sure everyone would love to have you on the case at the end of life.
This is so good. We could have used this 6 months ago. Thank you, it explains what we went through, what was normal and what we couldn’t have changed anyways. It helps smooth over some guilt feelings.
My mom is in an assisted living facility with Alzheimer’s Dementia. We’ve seen the downward stair step progression as you described. She still recognizes me, but has gotten pretty much non-verbal. This is one of those diseases that just seems to be cruel to the person with it and all of the family as well. She’s going on 3 years of the initial diagnosis. She declined extremely quickly but seems like the last 6 to 8 months has leveled out. Kinda just waiting for the next downward slope at this point. Thank you for doing this video (and your others). I just bumped into them a few days ago.
My mom had dementia like described for about 10 yrs and was at end stage and still knew me very well. We could talk but usually whatever I said she answered with something totally off the wall. I'd just answer her statement then she'd respond with another thing totally off the subject. It made her happy we were 'communicating'. One night she tried to get out of her bed, fell and hit her head terribly hard, breaking bones in her face. She'd had a left hemisphere stroke and couldn't communicate. She didn't seem to know me anymore. She seemed afraid of me. She lasted 2 weeks in this awful condition until she passed. I wonder so much if she knew I was with her when she died. It seemed to be such a struggle of a death. She had the death stare and wouldn't respond to me at all. I'm still so sad over all this and wish she'd known I was there with her.
I moved my mother into our home in March, 2020, as she was diagnosed with Lewy Body Dementia in 2018, and 2 years later it was determined she could no longer live alone. I am the oldest of her 3 daughters, age 66, and my mother is 84. Since my retirement in February, 2020, it seemed the most practical and beneficial thing to do was to bring my mother to live with myself and my husband, so I could be her caretaker. In September, 2020 she fell and broke her hip; in February 2021, she was diagnosed with metastatic breast cancer and went through the lumpectomy, chemo and radiation (now cancer free). Initially she was reasonably self sufficient but not able to be trusted to cook or drive. At this point, her cognitive abilities have decreased tremendously, having no memory recall and needing assistance with bathing, dressing, eating, and taking her medication. Due to the increase of her needs, and myself being the sole caretaker, it has been quite taxing. I thank you so very much for putting these videos out, as they are quite educational and, in a sense, very reassuring.
I'm living a similar experience with my wife. When people ask how I'm doing my answer is "Some day I will miss all of this but not today." Friends and family have kept me sane and my simplest prayer continues to be God help me, I don't know how. I know way too much about death and dying. One conclusion I have is that there are worse things than death. Dementia and and cancer are only two worse than death, there are many others. I quit going to caregiver support groups because each time I came home knowing I didn't have it so bad, there were many others worse off, The support groups were depressing but I did learn a lot and know where to go for answers besides prayer.
My wife's parents bought into a retirement living facility 9 years ago. Her mother had been showing signs of mild dementia for many years before that. My F-I-L passed away in 6 months and M-I-L has been residing in supervised care and then memory care of the facility for 7 years now. We've spent every possible moment all these years doing things with her until she was unable to go out with us 4 years ago. We are with her every weekend. I'm very grateful that she can afford the extreme costs of her care because I don't think my wife and I could have handled it on our own. I keep wondering how long can this possibly last? There is no quality of life. I feel so bad for her.
My 88 yr old daddy hasn’t been able to chew regular foods so they tried to grind his food but the nurse just called me this afternoon to let me know that daddy has a 102 degree fever and hasn’t eaten anything the last couple of days.
They are going to try some liquid medicine to try and bring his fever down .
She said this might be him declining but she wasn’t quite ready to say that yet.
Thanks to watching your live Q & A shows I am preparing for the “ actively dying phase” and my siblings and I are okay with daddy going to sleep in death because we have complete faith in Gods promise of a resurrection of our daddy back to a paradise earth.
My daddy firmly believed this and found great comfort in knowing what was going to happen to him after he died.
Thank you Julie for your candid talk about the dying process ❤️ 7:11
My mom was on Hospice for 1 full year before her death in August of 2021. She was the exception to many Alzheimer's rules, but one was that she could walk unassisted up until about 3 or 4 weeks before she died. At that point, the thing that brought her down was actually Covid. Amazingly enough... she recovered from Covid! However, her body was so weak by that point that she didn't stair step anymore. For her....Covid was a blessing to release her from the prison her body had become.
My mom has dementia and was diagnosed right before the pandemic. At the time she lived alone and my daughter actually said something to me about it. I went with her to the dr (after calling and telling them what was going on). Initially she refused any outside care then she lost her license (thank god - she was driving the wrong way around a circle and got pulled over. She forgot how to open the window so attempted to open the door. Fortunately the cop figured what was up but she had to retake her drivers test and failed it. It was hard bc she lived 45 min away and I would have to go there 2-3 times a week to help her grocery shop, dr appts etc. I’m a single mom with my own business so it was hard. I have a sister but she does absolutely nothing to help. In fact she moved out of state in the middle of all this. You are right about it being like stairs. She finally agreed to move into a retirement center - like assisted living but they don’t assist. All of a sudden she took a big step down. Stopped going to meals, taking her meds, bathing etc. I had to find an alternative quickly. I decided on the one closest to me closest to me as they are all pretty similar we spent a week packing up her stuff (this was the one time I asked my sister for help and she refused. Said it was too far a drive - just under 2 hours and she’d have to board her dogs and spend over $100 in gas and tolls. She had no trouble coming up here when she wanted to sell her house and move out of state and needed the deed transferred to her and the house was in my moms name as my sisters credit is in the toilet. That’s ok. She’ll be back again as soon as my mom passes away to collect her inheritance. As my moms POA I intend to drag that out for years!!! Anyway the night before the move my mom sundowners really bad. Kept trying to leave my house saying I was lying to people about her condition. She was angry with me and it came out of no where. It was awful. She tried to leave 3 times and she had a bad limp at the time as the result of a previous stroke and really needed to use a walker but refused to. I was so afraid she would fall. I called 911 but they said if I couldn’t calm her down and they were forced to come out they would have to baker act her. I finally got her inside but didn’t sleep Tat all that night. When I mentioned it to the new assisted living facility she was moving to that day they said she was a flight risk and had to put her in memory care. To this day I feel horribly guilty about that. She was there 7 months and it was an absolute nightmare (I swear this is like a soap opera). One of the residents kept going in my moms room (and other residents as well) and stealing her stuff. What concerned me the most was my mom would wake up and this woman would be creeping around her room in the middle of the night. I can’t tell you how many times I complained. They kept telling me they were moving my mom (and several other residents) to the first floor as they were higher functioning but the kleptomaniac wouldn’t be going and it would take place next week. This went on for 21.2 months. Then one afternoon I was going to pick my son up from school and my mom had taken a “minor fall” and they needed my permission to take her to get an X-ray - just a precaution. I said of course and I was getting my son but do I need to come. They said oh no. Your mom is alert and fine. We will keep you posted. 3 hours later the hospital called to inform me she had a broken hip and needed to be transported to another hospital for surgery. Her “little fall” was the result of that resident shoving my mom across her own bedroom after my mom went in there and startled her as she was stealing items from my moms drawers. My mom spent a week in the hospital and a month in rehab. She will never walk again. Of course I hired an attorney (of course they are attempting to cover the whole thing up. I’ve since learned my mom was the second person that resident put in the hospital in a month. She is now in - it’s considered assisted living but more of a home. Only 3 other residents and run by a loving Indian couple. 3 moves in a year. I’ve been exhausted!!! She now has issues with UTI’s all the time which make her symptoms a lot worst. It’s SO hard. Her biggest issue had been speech but now she’s forgetting things and people. I feel horrible saying this but sometimes I feel it would be easier if she passed away. She is only a few miles away so I see her 2-3 times a week but I always feel so much turmoil and anxiety before walking in there. I feel so guilty for feeling that way nut just hate seeing her this way.
That’s exactly what happened with my dad. He was in long term care for Alzheimer’s-dementia and he developed a UTI. He was placed under hospice care and passed away within 24 hours.
I'm exhausted in every way and we're just a handful of years into this. The idea that it could be 10+ years is utterly terrifying to me. I don't know how to face that possiblity...
Mom is already 83 and not generally healthy, with heart and circulation issues, including pacemaker, has had DVTs and PEs. I find myself praying her body will give out before her mind completely does. Then feel awful for thinking that.
The non linear progression is toughest. You get this little grace periods, some approach or meds or treatment gives her a bounce and it seems she's in a precarious balance and doing relatively well considering, for weeks or months. Then as Julie said, a UTI or diarrhea or fall and the bottom drops out and ground is lost and never regained. Usually. You never know what to expect.
The mental aspect is so much harder to me, than any physical issues. It robs you of who they are, your relationship with them and history of them. The worst.
My grandma is suffering from Alzheimer's and I'm living with her to take care of her until she progresses enough to need more help than I can give. She was officially diagnosed a year ago, but had symptoms for a while before. I'm guessing she has had the disease for 4-5 years and was diagnosed as a moderate case of it. Thank you for your videos!
I take care of my grandmother with Alzheimer’s & Lewy body dementia. We are in year 10 I believe & I thank God that she is doing as good as she is. (Knock on wood) It’s the worst watching it all. But I’d do anything for her. She & grandpa helped raise me, so as you can imagine, they are my people & we are incredibly close. She doesn’t make sense anymore but knows my name & asks for me if I’m not there. And even though it doesn’t make sense, she’s in there somewhere still. Sometimes she will randomly say things that make complete sense & would be in reference to something you were talking about a week ago & it shows us how she literally was paying attention and just can’t communicate it all the time. It’s crazy. She was on hospice for a bit & then was taken off bc she’s kinda plateaued a bit. But I know her time is coming & I honestly just pray our Lord takes her peacefully in her sleep in the future. Idk how I’ll live without her around but I pray God gives me strength for that too. Love your videos though & thank you for doing what you do! 💜
In Australia our residential care has hospice as the norm so the moment dad went into residential care it was considered hospice and palliative care. He was there for 5 years - needed help with personal care, reminders for meds etc. so there was no transition from residential care to hospice - the staff who care for the whole facility were the same people for end of life. Dad had a fall. He was mobile, almost non verbal, ate screamies for any meal, but end of life care in the last two days just had check up’s and rotating his body, ouch care etc every 2 hours around the clock.
Please could you do a video specifically on vascular dementia, Julie? My mum has this, and while I'm aware that there are differences between it and Alzheimer's, it can be very confusing! Thank you so much for what you do, its so good to hear honest conversations about the one thing none of us can avoid❤
Just found you. I'll be sharing this post with my young adult children. Their father/my husband has Alzheimers. I think he's stage 6, but I know what you've described here is on our future. Thank you.
My wife died of Alzheimer's. I took care of her at home until she reached the paranoid stage and became threatening. Her time in the facility went OK for months until she began to hit other residents. It was a blessing that she lost mobility and had to be pushed around in a chair because she was in danger of getting thrown out for hitting people before she lost mobility.
Thanks julie for putting out this video about Alzheimer’s dementia currently taking care of my mom she’s been on hospice for seven months now she’s on another plateau after a uti infection again she’s been sleeping a lot but still eats occasionally
THANK YOU JULIE AND IM THE HUSBAND THAT LOVES YOU VERY VERY MUCH AND MY WIFE LOVES YOU TOO BUT MY MOTHER HAD ALZHEIMERS AND AFTER SHE HAD IT FOR 2 YEARS WE HAD TO PUT HER IN THE NURSING HOME AND SHE LIVED THERE FOR 7 MORE YEARS AND PASSED AWAY IN HER SLEEP AND SHE JUST DIED BECAUSE HER HEART JUST GAVE OUT BUT SHE HAD A TRIPLE BYPASS SURGERY 20 YEARS BEFORE SHE DIED BUT WE KNOW THAT MY SISTER ASKED GOD TO BRING HER HOME BECAUSE MY 55 YEAR OLD SISTER DIED A MONTH BEFORE MOM WITH SMALL CELL CANCER AND THATS WHY WE KNOW THAT SIS ASKED GOD TO BRING MOM HOME BECAUSE MOM LEFT EXACTLY A MONTH LATER AND MY SISTER WAS AN LPN AND SHE COULDNT STAND TO SEE MOM LIKE THAT AND MOM WAS SO FAR GONE THAT SHE WAS LIKE A ZOMBIE BUT MOM WAS LIKE THAT FOR 7 YEARS OF THE 9 YEARS THAT MOM HAD THE ALZHEIMERS BUT THANK YOU SWEET JULIE FOR ADDRESSING THIS ISSUE TO HELP OTHERS UNDERSTAND WHAT EVERYONE GOES THROUGH WITH A FAMILY MEMBER HAVING THE WORST DISEASE EVER AND WE PRAY FOR EVERYONE ELSE THAT HAS TO DEAL WITH ALZHEIMER’S IN ANY WAY 😭😭😭😢😢😢🙏🙏🙏✝️✝️✝️💜💜💜
Julie, I am new to your channel. I find your videos rich with information and common sense. I've worked in hospice for a couple of years now, and I learn something new from each video I watch. This may seem petty, but your opening credits depict a Caduceus, which is symbol made popular by the military (two snakes and wings). Most of us "purists" in medicine relate more to the Rod of Asclepius (one snake, no wings) as a symbol of healing. My impression is that you are definitely a "one snake" caregiver. I invite you into the club. Thanks again for your wonderful work.
I came to your channel today specifically for this topic. My Grandma has Alzhimers and 2 months ago was found unconscious with very low blood pressure. We thought we were going to lose her. She entered hospice but has rebounded about 95%. It breaks my heart to discover this may be a very long and lonely road for her. She is very aware her memory is bad and when we visit and she asks multiple times how we are related.
Ty for making this. My dad passed in 2019 from Lewy Body Dementia. It's very 😢for me. Thank you for what you do. 🙏
I am in a tricky situation, where my mom is in a twilight. We are educated about death and dying, all paperwork is in place, and we give her food and water when she wants it. She still wants it and can swallow, talks to us in the mornings, but we see the gradual, slow progression. She is total assist after breaking her hip. She does need total care now. However, she is still “in there“, with periods every day of engaging with us, and enjoying a beautiful environment that we have here, and two long-term loving caregivers as well as myself. Here’s what’s tough for me right now, beyond the obvious.
Mom is in no way vegetative , is often alert, engages with us, has pleasure. But the message I am receiving from a family member who also loves her, is that because mom would not want to live this way (who would), anything being done for comfort care, could also be extending her life, and when I push, it gets down to the food and water. this hurts me. I feel we will know when that time comes because she won’t be able to swallow and she will be sleeping most of the time. She won’t have periods like today, where she is enjoying the beautiful day, the flowers, outside, etc. We are still palliative because she has not qualified for hospice yet. I suspect with my mother, it will be when she is sleeping most of the time. She has a very healthy body. She is still swallowing without aspirating. What I am struggling with is this idea that her continued existence is an injustice to her, because she would never want to live this way, and that, perhaps more sedation, which would lead to more sleeping, thus more decline I guess, would be more humane. And yet I don’t see her continued existence as an injustice to her beyond the fact that dementia itself is unjust.
I have felt, as long as she is not suffering, even in this cognitively impaired state, who am I to say her life does not have value. I struggle with this, because of the message I am getting that it would be kinder to look for opportunities to withdraw care as a humane gesture. When I press, that seems to be about food and water. I keep saying, we only give it to her when she wants it, but I’m not sure I am believed, or trusted when I say this. Because we ARE feeding her. She lets us know when she wants it or not in several different ways, and we totally respect that, but because of her tremor and contractures in her hand, she can’t usually hold spoon or cup. But, is often hungry and thirsty, still. We watch for those changes, we see that she is gradually eating and drinking less than sleeping more, and we are following that lead.
Believe me, I am not that family member asking for things like feeding tubes or full code on someone like my mother, we have all documentation from the MOST form to the DNR, she is signed up with palliative, who also have hospice as part of their agency and I am told it will be a seamless transition. They review her for hospice versus palliative, several times so far. She’s not quite there yet. since we have all the supplies and equipment we need and regular visits from palliative, I have felt this was fine.
And yet this idea that I am somehow responsible for her continued existence with dementia, because we are giving her such good care, is tearing me up a little bit. It wakes me up at night. I don’t really believe it, but it is haunting me because there is someone in the family who does think this, i suspect.
And yet, I am the only one actually here, along with her caregivers, and this is acknowledged. There is support for that. I truly believe that our primary caregiver, who has cared for many dementia, patients throughout their disease, and through their death, will know. We talk about it. When mom has a bad day, we think, is this it? And then, my mom, being the bad ass that she always was, and is, bounces back the next morning. Less so all the time, to be sure, but we feel we are following her lead. And yet, it troubles me to think that there is an idea that the thing I am doing, the level of care we are giving, is perhaps seen as an injustice to her, because it is prolonging her existence. I think I know the truth of this, I don’t think we are doing the wrong thing, I believe we are following her lead in an educated, and informed way, but how can I speak to this twilight period.
She is comfortable and content, but yet of course she would not want to live this way.
Has anyone else felt this or received messages like this?
I have not gone through what you are going through but i think you are doing the right thing.
I personally could not live with myself if my elderly, bedridden mom asked for food or water or any basic care and i denied it. To deny a thirsty or hungry person food or water seems heartless and cruel to me, even murderous.
The body will shut down at its own pace. Let nature take its course. She will either pass without going through the not eating process or gradually her appetite will become less and less as her body prepares to pass. Either way it is important for you spiritually, emotionally and psychologically to know you did everything you could to make her last days as comfortable as possible and if that means feeding her when she is hungry then you can have a clear conscience when she goes.
I agree totally with the reply. I would hope if I'm still able to communicate hunger and thirst that someone would respond to that. Follow your heart and you'll have no regrets. I can't imagine the regrets you will have to live with if you don't. The fact that she has you looking out for her is a godsend.
Thank for this video and all you do. My mom was diagnosed with alzheimers dementia 5 years ago, she was not taking diabetes medicine and had delirium from a bad uti infection. We were forced to make a decision to put her in a nursing home as she was very combative and not caring for herself. She has end stage kidney disease and had a fall a few months ago she's went downhill and is barely verbal or awake. most of the day now. You are correct about the up and downs and plateau.. Its been a roller coaster very hard to watch her go down then get hope when she improves for awhile then another episode makes her go down hill fast.
My heart goes out to you. Hang in there.
@@alcambrola2834 thank you ❤
@@michellechavez2423 Your welcome. That was the toughest decision my sister and I made. Even though I lived with her as her caregiver and was her health proxy and Power of Attorney, my sister who lived an hour away was involved in the nursing home move. and other decisions.
When your own health starts to suffer, mental and physical, you know a decision has to be made. It's been 3 1/2 years and I'm still processing it. Of course, the world also went crazy too as we all know.
@@alcambrola2834 so sorry for what you and your sister went through. It is a hard decision, my mom was a nurses aid and never wanted to go there but we could not give her the care she needed. My brother is power of attorney but involves family with decision making. I have guilt over not being able to care for her myself, I am disabled and just could not do it. It was so terrible being seperated from her because of restrictions during pandemic, she went down hill alot from isolation. When our loved one is in a nursing home or in hospice, such a messed up time not being able to see them when they need it most. It was a very heartbreaking time for many. My heart goes out to you as well.
@@michellechavez2423 Thank you. I know a few people whose parents were in nursing homes during the pandemic and they couldn't see them. Take care.
Thank you so much for your work Julie ❤
Thank for this video.
Hats off to You and all those many nurses who are doing a fantastic job !
Thank you!
Currently caring for my 95 yr old mother in law at our home. Although she hasn't been officially diagnosed, we are confident she has some form of dementia. She has many of the behaviors and symptoms. We are in the process of getting her evaluated by a specialist. In the mean time, she fell several wks ago and has been to the emergency rm and was given lots of tests as a result. She is losing weight rather quickly and i can tell she has less and less appetite as time goes on. Her vitals are all pretty normal but she currently has a uti and we are giving her antibiotics for that. Her memory is really bad. I mean like her short term memory is extrmely bad and so is her long term. Her reasoning abilities are gone. She is confused the most after she wakes up from a nap or from sleeping all night. I got one of those buzzers for her to keep with her in her room when she needs to use the restroom . It chimes in our bedroom but she often forgets to use it and goes by herself with her wheelie or not. We are afraid she will fall.again. She wears a diaper because of a previous colon cancer surgery but now she hardly knows if she has pooped her diaper anymore without us checking. She was 130 lbs when she came to live with us at the beginning of the pandemic. Now she is about 105lbs and dropping weight like i said faster than ever. We are very concerned about her and we are trying to learn all we can to help her. She has physical therapists come to 5he house twice a week to get her legs stronger but i don't see much progress tbh.
This is the toughest challenge my wife and i have ever encountered as a couple. We do not have children.
Thanks for all your information. You are a big help to us and many others i suspect. Take care.
My mom has Alzheimer's. I learn so much from you
I wish I had met you and/or nurse penny in October of last year 😢
I just lost my dad on March 1st of this year. Dementia, CKD, diabetes, CHF. It was a lot. And it would've been helpful knowing thing like this ahead of time instead of along the way. October to March of this year was very tiring and emotional.
And it's still emotional 😭
Tremendous content Julie. Thank you.
Thank you Julie❤
Im so glad i found your channel today. I needed it. Thank you ma'am. ✌❤
I absolutely love this channel! Im 56 and to hear what she says gives me great comfort! Im very spiritual and believes everything she is saying!!!
This is unbelievably helpful and applicable to Lewey Body Dementia, from what I'm experiencing as caregiver for a family member in decline. Thank you so much!!
I worked in an Assited Living Facility, and can assure people - Alzheimer's is hearthbreaking.
As weird as it may sound to some people, bowel cancer was a mercy for my Granddad who was suffering from Alzheimer's Disease. He went back to WW2 in his mind & would wander the nursing home trying to escape enemy soldiers. Had he not gotten bowel cancer, he would have suffered so much longer. As a Christian & knowing my Granddad to be a Christian, it was a relief that we know he's now in Heaven & no longer suffering. Of course, we miss him terribly even two decades later, but it was such a relief to know he was no longer suffering.
I was a caregiver for the sweetest soul on earth she came on hospice in September after being hospitalized for aspiration pneumonia. She had down syndrome and then vascular dementia. She then became bedbound wasn’t until November that we thought we were losing her and she would bounce back. It was like rallies the hospice nurse we had said she never had a patient like her but the last time she went down and basically never woke up it was Christmas day she was awake not really eating and then on the 26th. She became comatose passed on the 28th. I’m gonna say it was a beautiful experience as I was the caregiver that was on the minute she passed away she was so angelic so perfect she looked 30 years younger. I miss her something awful she was just buried on 6 January but the piece that filled that room on the 28th was undescribable. I felt she suffered, though, even though we were doing morphine and Ativan, her breathing was so horrible to watch and hear down syndrome, and the dementia was horrible to watch because she was such a loving soul
And watching you for the past year just to educate myself from my own time when it comes helped me greatly when I was caring for her the hospice nurse is that she had actually watch you and when I tell him that I watch you and told him the things that I knew or whatever they were pretty impressed
You’re really good at this
My mother was put on hospice 2weeks ago. She has Alzhiemers and fell and broke her femur at Christmas. She is at home She sleeps mostly and will sometimes eat, they did place a urinary cath and giving prophylactic antibiotics to prevent infection. It's such a terrible disease my dad is heartbroken 💔 Thank you for this information.
My maternal aunt resisted changing her lifestyle to accommodate her waning abilities as she aged. The day came when she fell in her apartment and was rushed to the ER. That's when I finally got help from the medical community to have her deemed incapable of caring for herself due to dementia, and brought her to live in an assisted living facility in my town. While cleaning out her apartment, I discovered that she also had schizophrenia, which put me in a moralistic bind, deciding whether to tell anyone, which would put her into a position of taking psychotropic drugs. I eventually had to do so, and managing her medications, complicated by her dementia-fueled resistance and paranoid schizophrenic-fueled distrust of each pill, made caring for her exhausting. She progressed just as you described here until she died, eleven days after burying my mother, who died of the same disease.
I went threw this with my dad in August he passed August 27 i miss him so much
I really appreciate your videos! My mom has severe dementia and lives in a memory unit. We have been watching the progression of her disease for years. she lived with us for a couple years but then had a fall and after that she needed more care than we could provide hence the move to a memory unit. We wonder what the rest of her time will look like but it feels good to be familiar with the natural steps and to not be afraid.
You pegged it absolutely correctly. My husband has Frontotemporal Dementia. He is still midrange (seven years in) but already has swallowing, incontinence, and balance issues. This is the absolute worst way to die from my perspective.
Your hair always looks fantastic- thank you for the effort.
BE@UTIFUL Commentary, no denial
Good info, thanks.
Thank you for being here
Thanks for the information, while not formally diagnosed I feel that my mom is in the beginning stages of alzheimers/ dementia.
Thank you for highlighting Alzheimer’s. There’s so little information for the very end stage. I am so grateful. My mam has had Alzheimer’s for about 19 years. She is non verbal and immobile now.
We're going on 14 years with my mom from onset-5 times over the years we gathered the family to say goodbye. This was spot on
My mom is early on in this and I worry about what the future will bring sometimes. So watching your explanation really helps.
Iv watched your channel and luv all your advice.was lucky enough to be with my brother 🙏 ❤️ when he passed.its not near as scary if u know what's coming. From the frozen praire of South Dakota peace ✌️ ✨️
You described exactly what my uncle went through. Fell in January, had an infection, was bed bound, had a hard time speaking. He passed two weeks ago today. He was only 73. Thank you for this informative video.
Oh, good. Thanks for the description, Julie. Something to look forward to for Mother, if I don't get there first.