Alzheimer's: The Caregiver's Perspective
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- čas přidán 25. 08. 2024
- From diagnosis to saying the long goodbye, caregivers share their diverse experiences of caring for loved ones in the world of dementia. Alzheimer’s is more than memory loss; it affects many generations and is the 6th leading cause of death in the United States. Teepa Snow, Loretta Veney, Bob Schaefer and many more explain how they creatively navigate the frustrations, sorrows and complications of caring for a loved one who can no longer function safely on their own.
This documentary is a production of the Community Idea Stations and WCVE PBS.
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Alzheimer’s Support group is phenomenal. I’ve been on this journey with mom for 5 1/2 years and have never been so physically, mentally and emotionally exhausted in my life. The more educated I’ve become the more able I am to be strong and patient with her. If she can go through this heartbreaking disease so full of fear, frustration and anger then I can be strong enough to go through it with her. Sometimes you have to go to the bathroom, cry your eyes out, say a prayer and take a deep breath and know that even though their brain and memories die a little each day, the love you’ve always known is still deep inside. They’re afraid, very afraid 💔
the stress and responsibility are overwhelming.
I feel like it’s not my mom anymore. It makes me very sad. She used to be my rock now she just sings the same song and talks to me about her childhood. When I say something she stares at me and doesn’t understand. I feel very alone.
Me too...
Must be terrible for you and even worst for your mom. How’s your mom doing now?
❤️
Me too x
I am so sorry that you have been through this... it is never easy to lose someone you have been with your whole life
I miss my mom. I keep thinking she’s going to come back and be herself and we will have long conversations about everything that happened on 17 May 2016 and since...the strokes, the seizures, rehab, G-tubes being pulled out, the many falls, how it brought my siblings and I closer. Looking into her eyes, hoping to see her again. To listen to her speak in full sentences. To see her as she used to be - a still beautiful, dignified, well-dressed and impeccably groomed and active mother. I seriously still have it in the back of my mind that she’s coming back. Everyday. And everyday I grieve. Everyday.
Update: my beautiful mother died on Feb. 23 with her family surrounding her
❤️
May she remember and rest in peace, while she smiles down to you.
*Tiffiny, I’m sorry for your loss. May your mother rest in peace.*
Пусть земля вашей маме будет пухом.
I’m so sorry for your loss Tiffany. I think it’s important that you remember your mother and who she was before she developed the disease. Those are the wonderful memories that no one can take away. Your memories of her as a lovely vivacious woman, full of life are so special, & I pray that as you think of all the good times, your heart will be filled with peace. ❤️💐
I was the primary for my Dad, until the last year of his life (from alzheimers). IT WAS HARD...DAMN HARD! I still cry when I think of how impatient I was when I was over extended, over tired and living on about 4 hours of sleep a day. After Dad died, I was the primary caregiver for my Mom who had pretty nasty mental health issues. Mom died in 2017 from a stroke. Being an adult caregiver for anyone, especially elderly folks like my parents, is incredibly difficult.
I understand exactly
Because it is exhausting- even now just thinking of what I went through and knowing that you probably went through the same troubles, makes me sob along with you.
Quid I thought I had PTSD until I found out it is called Compassion Fatigue.
Today is 18/1/2021
I have 3 brothers and 2 sisters and they left everything to me, my brother would come and take my mothers money and l put a stop to that, and he tried to kill me..
It has been Extremely difficult l live with my mother, I have not slept all night because my mum has been up just walking.
I can't begin to tell you how tired l am..
I I have acts my brothers for help and 5th turned around and told me that they have their own life to live I have given up everything when I say everything I mean everything since taking care of my mother 2 years and 8 months I have not had A-day off I have not had a weekend off The only time I get to myself is when I go grocery shopping and then I have to leave her by herself or sometimes I bring her with me but that is extremely difficult because I have to push her in the wheelchair also when I get to us der I'm pushing my mother in the wheelchair and also the shopping card I remember one day sitting dining asdan just crying my back of hurting me I can't begin to tell you how I feel.
There are days when I do get upset with my mother and then I have to pray that scarred to forgive me but those are the days where I have gone 4 days without sleep..
@@SuperDjmoonlight you are an angel. But yes, you need some time out.
Do not judge yourself too harshly. You did the best you could and deserve nothing but accolades.
My mother's mom had Alzheimer my mom had Dementia.. May 2021 i got the news, i have Alzhamer.
May God be with my son as he is already set in his mind he's going to take care of me. But i know as i told him, I'm alright when that time comes to place me some where, 'cause he won't be able to handle down the road. I cried so hard as I was praying, I told God, I accept what He has given me. I'm ok.. had to correct many times before i posted this.
My Mom died almost two years ago with late on-set Alzheimer's. It's taken me almost that long to be able to talk about it. As a writer, I felt it might be important to journal all of the changes and what worked for me to help and what didn't work. I was the care giver for a few years. Her downward spiral with this late on-set diagnosis was rapid. I cared for her four years then moved her to a facility. That was hard. Almost as hard as selling my childhood home where my mother from the "great generation" rarely let anything go. As it turned out three of my friends were going through this with their mothers. Being childhood friends, we all journaled and ended up writing a book about it. When Mom died I couldn't go near it. As I reviewed my part in the editing process, I fell apart because of all the things I missed and how I treated her because of my "schedule" and my "selfishness." Over time, I have learned to forgive myself but it is still hard to talk about. Thanks to the Alzheimer's Association support, they made my journey easier with knowledge and information. Videos like this and others helped. I didn't feel so alone seeing others stories. I'm forever grateful to the Alzheimer's Association.
My husband had dementia. His children were In denial so I was 24/7 caregiver. No breaks. No time alone. No time for myself. The worst part was the a very angry words and insults. It hurt but the words weren’t truly meant to hurt me. I did lose my patients often. It is hard.
It's miserable to deal with these ppl. They are needy....always imagining the worst...cant turn your back on them. My mom has decline but she definitely purposefully does things to torment me.
I understand 😢❤
Makes you realise we should be more appreciative of our care workers and also be more patient and understanding as people
my dad had this happen to him at 53-years old-We lost him with this disease for the
next14 years-so sad for our family ,,especially for my mom. we all took care of him
all 10 of us- my 6 sister and 4 brothers. I Learned from just working with him and his likes
and dislikes .I was his big sister at that time. Our roles had changed .but my love for him
never changed. He will always be my DAD,
Marie Pino - 💖
I’m really impressed with your comment, if you don’t mind friendship please were are you from?
@@tonybaroud3511TROLL!
Best thing is to hire a caregiver if you can afford it, even part-time, especially if it is advanced Alzheimer's. Your own health will be greatly affected, if you do not. Prayers to all. 🙏🏾
My children's step grandmother had it and was placed in a care home. One day when they visited her, she told them a horse had come to visit her. Of course they thought "Wow, she's REALLY going downhill." Nope, it turned out after talking to caregivers there, a therapy horse had come to visit just like they sometimes bring in dogs or cats.
Because of this I will study hard and become a nurse and work with only people like this 😢😢🙌🏿I mean it with all my soul
Bless your heart! More people are needed with an honest to goodness passion for this work.
God bless you,
being good at nursing is an inherent quality you have of empathy and compassion. once you are a nurse it's really hard wanting to do anything else because you would rather spend your time helping people. some people haven't been exposed to dementia (of any kind), and it can be very scary. I am especially sad because I just found out my mother has it. I am completely devastated but now I can help her while she is most vulnerable, just as I once was.
Blessings to an angel
LindaTheTruthSeeker this cov 19 has slowed things down but I’m still on it 🖤💪🏿we must keep pushing love true love
I'm retired in Danbury, CT, and my sister lives in Ridgefield, CT. She retired at 64 from NBC, in Rockefeller Center. She was a journalist, for over 30 yrs.She was diagnosed with Lewy Bodies dementia. Now, 5 yrs later, she is wheelchair bound, diapers, spoon fed, and round the clock caregivers, in her home. I believe, this is the final stage. Blessings, to all the nurses and caregivers in the medical field.
Hi, watching this in milford ct. Relative I have seems to be experiencing early Alzheimer's with short term memory loss. These stories break my heart.
How is she going now?
God bless you 🙏 ❤️
This is such a sad disease. My stepmom is in the final stages. She was once a very independent, hardworking woman who now can't do anything on her own. for anybody that knows Glen Campbell I highly recommend his movie I'll be me. My prayers go out to everybody going through this.
*DEMENTIA CURE:* Thanks for all these comments and for sharing some of your own story. I am a 74-year-old man, I was diagnosed with Alzheimer’s disease 15 years ago, I always like to use my experience in a positive way to educate others. It is common knowledge that Alzheimer's robs people of their ability to remember. Having dementia for me was lonely, isolating and scary. But when people share their stories, it can provide inspiration, hope and a welcome reminder that you are not alone. Homeocure Worldwide is natural cure medicine. The professional had earlier told me there is no cure, I asked professional to explain this to me? They said it is a miracle. All the patients I have directed to Homeocure Worldwide return with thanks. Don't let drug companies keep you as a slave to their mediocre medications. Don't let them tell you there's nothing that will help you. Today I can say that I'm living life instead of surviving it. For more info, contact Homeocure Worldwide or drmakusm@ gmail. com
My Husband had Dementia,thanks for sharing your story ,Yes is tough but not a burden we can go trough of this,Parying someday have cure for decease ❤️🙏❤️❤️
@@johnsonjack4611 why do u have to exist. Seriously spreading a fake cure in order to scam people. Seriously what is wrong with you.
It was a brilliant and Brave movie.
Thank you for sharing your stories. My husband was diagnosed with Vascular Dementia/
Alzheimer's 10 years ago. I admitted him to Assisted living in 2017 as his diabetes needed care I couldnt give him. As well his anger was becoming an issue. My daughter was my co-caregiver. After we admitted him to care we both collapsed from exhaustion. It took about a year to recover. Self care for the caregiver is so very important however it is a challenge finding the appropriate resources to help caregiver and loved one. In the end I had to choose adequate physical care over emotional needs for my husband. This alone gave me time to sleep, to care for myself, and to take care of all of life's necessities which allows me to be a better emotional support for him.
I could relate to 1000% of everyones story. I am so glad I watched this. As sad and hard as it is, I know what I am experiencing as Mom's care giver is valid.
I was very lucky to grow and live 18 years with my family and granny under the same roof. When I lived by myself my granny diagnozed with Alzheimer's and my dad became her caregiver. We were able to have granny home for a long time by taking care of her all together. My dear grand mother past away late this summer, bless her heart. She was a lucky lady living home longer than we would imagine and she also had some good years in a care home. I really appreciate every caregiver. PS. I became a practical nurse because my granny ✨
I'm now having to go through this with my mom.. Its so sad , I feel like a horrible daughter as I have to now be the parent... watching this helped me think of ways to help her feel more secure & content.. Mom & my way of bonding was going places-I cant do that so much now, but need to try.. I miss my old mom... Praying for a miracle.
You having to be the parent now doesnt make you a bad daughter, youre just returning the favour!
Feeling guilty for something you never caused is probably one of the worst feelings of all. Been there and done that. Its been a year since mom's passing and i still have those feelings.
@@idabug3 tv
I’m sorry and I don’t mean to sound rude. But there’s no way that a “miracle” would happen in reference to your mom “getting better” she will get worse. And I really hope that you’re able to take care of yourself
Father had dementia for 15 years. He passed away July. He would get aggressive at times with others. He was in long term care. He got gangrene -so unexpectedly. Dementia - no words can describe the deep sadness and sorrow. I am old now and realizing how much of my life has passed. A challenge to create a new life. He didn’t understand the pandemic and he felt abandoned. Heartbreaking.
My heart goes out to any/everyone affected by Alzheimer/Dementia ... A huge shout out to any caregiver doing this alone! I feel your journey. I feel your pain because I've been there. How did I survive as long as I did without support is beyond me. People in my circle knew but support never came my way... And think I was too exhausted and overwhelmed to look any further. Lesson learned... Search for support regardless and don't stop until you get it. Support is Key. "God Bless"
My mother died 3 years ago from Alzheimer's. I was her caregiver and I had zero support.
@@oscarfatcat I'm sorry Vee. How are you doing now?
Thank you I will keep going at it. It just so sad.
I. Also have 0 support.
My mom was sick for 8 years with this terrible disease. She was an RN and was used to caring for everyone, not being cared for. It’s so hard to watch your loved one, who was so social and always going and doing , being reduced to a very scared child. Cherish each and every day. The repeated stories told over and over, will soon be replaced with silence. The beautiful smile will be replaced with a gaunt stare. So enjoy, converse, laugh, listen, document, and don’t try to correct what their reality is. We found music was very calming and peaceful for my mother. She was from Rhode Island and so loved the ocean. When they can’t travel anymore, bring the ocean to them. I found a CD with the waves crashing, and brought some sand so she could put her toes in it. With her headphones on and toes in the sand, she was transported back in time when she would walk the beach as a teenager. To be a caregiver can be exhausting, overwhelming and emotionally draining. But I was honored to be the daughter she trusted to take care of her until the end of her life. I hope she was proud and approved of the care and love
she taught me to do, she just didn’t know it.
11 years ago, I met a couple who changed my perspective on Alzheimer's completely. The wife, Gloria, was in late stage and appeared to me to no longer be able to speak coherently. Her husband, Ed, would come to visit her and feed her every single day, and when he would leave, she'd reach up and give him a kiss. I don't know what was in her head, but some part of her knew who he was or at least that he was there with her out of love. To those loved ones out there serving as caregivers, don't ever give up on your loved ones. No matter what it seems like, there is some part of them that knows you're with them.
Moms had this for 17 years. We have adjusted our whole life around her illness. Families just have to suck it up. We still enjoy some good times. God takes care of us.
17 years! my mom is only at 5 years and it's hell.
@@fromsuncity1 HI MY NAME IS JOY MARIE LUCILLEKHOBER I LIVE IN CANADA MY HUSBAND ALEX PASSED AWAY ON JAN 17/2014 IT HAS BEEN 7 YEAR AGO
I am a mother of 6 2 of my now adult children are also deaf/blind and my son has left sided atrophy of the brain so is very much still a baby. I have been a care giver ever since they were born and as 4 of my children are still at home and 2 needing and will always need my care I can’t see my role changing much in the coming years. However I am 50 this year and for the last few years I am finding my memory is really not good. Huge chunks of their childhood have been wiped from my memory so when my kids talk to me about their childhood I nod in all the right places but it’s like I’m hearing the story for the first time. I Am praying I don’t have dementia as I think it’s such a heartbreaking cruel way to die and I would hate my children to have to mother me.
E
Stress could affect the memory. Praying for you. God bless you.
My daughter who just turned 14 is firmly decided on studying Neuroscience and working with dementia patients. She started her journey and interest when she first listened to the album " An Empty Bliss Beyond This World" by the musician The Caretaker
Tell her to listen to Everywhere at the end of time!
@@grumpiesttitan7930 she's the one that told me about the album. Now its a family favorite!
I work on a Alzheimer’s unit have been for years and the saddest thing is when some family members don’t want to visit because they don’t want to see the person in that state 😢 everyday is a challenge but every single person at one point wants their mother ❤️
Amen
Just started working as an Administrator at a memory care home. It breaks my heart, I am happy to be apart of a community of memory care residents & caregivers ❤️
Bless you for doing such a hard job. The world need more young people like you to care for the elderly. God bless you. 👍❤️
My mother has this horrible disease i have been here constant 24/7 caregiver for 2 years its a constant struggle i already suffer from depression and now its worse i cry almost everyday i have severe panic attacks to the point my heart skips beats doctors have changed her medication but she still gets violent at times so its scary very traumatic for me. Can't imagine what its like for her i feel so lonely and helpless please pray for us! 😪💔🙏
I will pray my husband also have it and I am also the 24/7 caregiver.
It is sooo stressful, but looking at him it so scary to see him like this.
God bless the caregiver
32:00. "I think you constantly have to be grieving, otherwise you're in denial."
Yes
My friend is a caregiver of an Alzheimer mom. I didn’t know how bad the disease is until she open up and tears up.
My husband gets very vicious and has hurt me several times. He acts normal around most people, though. He even acts normal when our daughter visits. How is that
possible? I keep catching him in lies and he says I make him lie. I feel so beaten down mentally.
Go to a abuse hotline!
Mine started changing personality around age of 65. First it was baby talk with anyone, after that more and more changes, anxiety, silence, paranoia, verbal abusiveness and insults, in the end turned physical... until we had to put him in the hospital and find out it's dementia, likely Lewy Body dementia with some Parkinson's! It's still not all sure and he is rapidly declining, but was given medication and his rough behavior has pulled back... Good luck with yours... It's never easy... God bless...
I took care of my husband with Alzheimer’s, I’m 73. He died after 14 years at home. I was blessed to have been able to take care of him and keep him home until he died in 2019. It takes 24 hours, 7 days a week care. For my husband it did not go quickly, 14 years is a long time. One of the blessings was when he no longer remembered he had the disease. I would love to be able to share my experiences and how I coped with situations as they came up if anyone would ask me.
I would love to hear your story. I've not long found out my mother has this disease. I will need to help look her.
@@biancawinston5823 Hi Bianca, my husband was diagnosed when he was about 59. I had no idea what to expect. The saddest for both of us, especially him, was realizing the change that was taking place in his body. He would cry out of desperation. I would put my arms around him and reassure everything would be okay and that no matter what I would never leave him. The Lord allowed me the health and support I needed to take care of him all those years. I'm so sorry about your mother. How old is she? There are so many stages. I was so thankful when he couldn't remember any more. I also went through many stages. Anger, depression, weariness, what to do, trying to cope. I think one of the worse for me was lonleliness when he could no longer talk with me. He was here in body but not mind. Let me know if you get this and what questions you might have. I was glad to here someone was interested 😊, Susan
@@biancawinston5823 I replied to your message but can't find it
@@susandeal9042 Thank you for sharing your story, Im so sorry for your loss
I would love to talk with you; my Precious Husband has been having dementia issues for over ten years now. Our Sons promised Dad would NEVER be sent to a home, and they will help do anything. Still, seeing my Husband, their Dad, "disappearing" more and more or sleeping almost 24 hrs., or being awake for days on end napping only minutes at a time... we're never "ready" for whatever is going to happen, but always on guard. I would love to know how your wisdom could help me; sounds selfish maybe, but I promise, all those riches would indeed be paid forward.
I wonder how many caregivers of alzheimer people come down with alzheimers not because it is hereditary but because of the stress, lack of sleep, poor diet, etc.
Seen it happen in our family. So unfair, so sad.
Y ou don't get alzheimers from stress
Could be the reason her husband is so much better in the morning than in the afternoon is because in the morning you're more likely to be in ketosis. I wonder if putting them on ketogenic diets might slow progression and improve symptoms.
@@diguy65 A common thing in people with dementia is worse mood as a day progresses. Changing your diet isn't gonna do shit to your brain turning to goop.
@@Peacock__ We really don't know that for sure. All we know about is the plaques and tangles in the brain. We have no idea how they get there, unfortunately.
This is a very cruel disease. I love working with people with Alzheimer. It’s challenge. My prayers are with every family who is going through this process.
I just lost my grandpa to kidney failure. I cared for him, every need, feeding/bathing/shaving/transporting him around the house. But his mind was still sharp. Now I care for his wife, my grandma, along side my father. She suffers from dementia and it is hard, emotionally harder then caring for my physically dying grandpa. Everything is relatable in this video. Just brought me to tears. God bless caregivers. This is a horrible disease.
I deal with dementia patients daily in my job..and some Alzheimer’s patients..most of my client are 80 or older..(my oldest just passed away.4/19...101 years old...had all her faculties...her body just gave out after falling in her apartment...no one was with her at the time...I have watched many UTUBE videos along with my on the job training has opened my eyes up to this horrible debilitating disease..
Dementia is the umbrella term for; Alzheimer's, vascular, lewy body and many more dementias. Really the labels are just a way of defining the underlying pathology and presenting traits. In the end though every presentation of dementia is unique to the person experiencing it. It is hard for both the person living with dementia and their families. Thank you for working in this difficult field.
*DEMENTIA CURE:* Thanks for all these comments and for sharing some of your own story. I am a 74-year-old man, I was diagnosed with Alzheimer’s disease 15 years ago, I always like to use my experience in a positive way to educate others. It is common knowledge that Alzheimer's robs people of their ability to remember. Having dementia for me was lonely, isolating and scary. But when people share their stories, it can provide inspiration, hope and a welcome reminder that you are not alone. Homeocure Worldwide is natural cure medicine. The professional had earlier told me there is no cure, I asked professional to explain this to me? They said it is a miracle. All the patients I have directed to Homeocure Worldwide return with thanks. Don't let drug companies keep you as a slave to their mediocre medications. Don't let them tell you there's nothing that will help you. Today I can say that I'm living life instead of surviving it. For more info, contact Homeocure Worldwide or drmakusm@ gmail. com
Being a caregiver for many years with the brain change .i fell in love with those that have it . I now work for Teepa snow . Positive approach to care has been wonderful please look her up , for those that are scared and want to know more she’s so formative. I am a pac trainer with her company .
Wanda Statton,Teepa Snow’s videos helped me so much during this journey. She is amazing and so helpful, so practical.
I wish I had found her before my mom died for I believe that mom had dementia but wasn't diagnosed with it as she didn't go to the doctors. I've seen some of her videos and she's amazing! 🙂❤
I took care of my Mother for 8 yrs. before making the decision to put her in a Nursing Home it was a hard decision but she was wandering down the road and it became a saftey issue for her, now every time i go to the NH i see how happy she is to have other people to talk to and activitys 2 times a day and 3 meals a day some of those things i couldnt giver her at home, the staff at NH love her because she is always happy Nurse Practitioner said that is very unusual to see happiness in Alzheimers especially in the late stages they said she is easy to take care of, those things make me realize in her case NH was the right choice after 8 yrs of care,one thing i never did was promise her i would never put her in a NH because i had no idea what life would bring.
2558jmb, people need to realise that it's okay to take their loved ones to a good NH as long as they visit them regularly.
That’s wonderful to hear but unfortunately not all nursing homes are good places for the elderly or those with dementia.
Patients advocates are so important to help them find all avenues of help. This breaks my heart. Never, never be too proud to find relief for yourself, the caregiver.❤️
I am a very caring person and I love hard. I was a caregiver off & on throughout my life. But the last elderly woman I had as a charge drained me to the point where I didn't want to be a caregiver anymore. I don't regret my decision. The caregiving life is to literally lay one's own life down to help other people. I felt like I was disappearing and losing my identity. If someone is going to be a cargiver, they should make sure it is shared caregiving by a few people. Not just one person. It isn't fair to the living.
No you cannot lay your life down to be a caregiver. If we attach too much meaning to our role and become martyrs we do burn out. -caregiver of 15 years
I have Early Onset Dementia, diagnosed 2017. I’m a single mom still raising my kids. It’s a scary position to be in.
i hope you know Jesus, He's the only help i have with my problem
LivingLifeWithLisa - 10 patients treated so far this year, 100% reversal. Formal study soon to be initiated. Generic drugs prescribed by an experienced physician who must meet with you. No fee for meeting or treatment. Only money paid is to your pharmacy for the medicine prescribed. Zero money to doctor. Not a scam. Totally legit. Please call me to learn more. (707) 365-6743. HOUSTON Tx = central time. Alternatively you can wait until the study is done and FDA approval is given, at which time everyone will know. Either way, God bless you and yours!
Know jesus ?!? Are you kidding...why did he let this happen ?
God bless you and your children.. wow. You are truly accomplishing one amazing feat
How are you doing? How are your kids? Hope you are doing ok
My mom had dementia and she lived with me for a few months - until it became so stressful I was throwing up and losing weight. We put her in a care facility and I had such guilt! But she got worse and I’m glad she was getting the care she needed that I was never going to be able to provide. My sisters husband got violent and broke windows in the middle of the night - and that was scary! He was in a care facility two days later. Your suddenly living with someone you’ve never met
I learn from every one of these comments, and they make me feel as though I'm not so alone.
I’m not
Thank you for this video. My mom and sister were Alzheimer’s victims. Mom died at 67, my sis 85 is in a locked facility.😢 My mom was sick in her mid 40s. She had me at 40 and never wanted me around. I understand now.
I'm so sorry. May God bless you with some beautiful life experiences!!
Watching this video and looking at what I am going thru I notice one constant commonality is "Iam tired." Just plain tired even when you have a bit of help. Sometimes the needing to rest over comes the help you get.
My grandmother grew up in the deep country forests, they drank spring water for most of their lives. She lived to 100 and had all her screws in tact on her departure from this life.
She was far from big pharma. Awesome!
As a professional care taker, I have a lot of visits with folks with this mental disease. There are many different levels of this dementicia. Agreesiveness is scary. The crying, the yelling & multi symptoms. It's hard. I love my job. You have to be quiet & study them..
Watch the entire thing, there is so much along the way.🙏
My family went through it all alone with my father, wish we had more help. Wore us out! My father was diagnosed in 2000, signs around from late 1990’s, passed in 2009. Such a horrible disease.
I’m really impressed with your comment, if you don’t mind friendship please were are you from?
My mother had to go to the er in an ambulance and she told the paramedic she had a gun in her purse.. they pulled over and called cops. Luckily i pulled in moments later and explained she had dementia which my brother forgot to tell them. It certainly doesn't make life boring.
How funny! God bless your mom.😊
Just as they cared for us when we were children, we must take care of their needs when they need us most. We must do for them just as they did for us. It wasn't always easy for them and at times it will be a labor of love for us.
I was a caregiver for my mom, for saveral years. It was very hard to care for her. The person is no longer the same person that you bew, very hard to accept. The rules change and you are now acting as there parent. It's sometimes so hard. The bible speaks of this, it was my pleasure to care for her, as she took care of me. Thanks. She's sensed passed away in November 2014, and I still miss her.
So true, but my friend reminded me that raising children is so different then caring for a parent with dementia, especially early onset. Our 2 sons have just recently married the past few years and plan to have children, if something were to happen to me, how could I expect them to care for their father 😔 Raising children these days is challenging enough then adding a grown adult with this disease would be downright difficult and could cause marital issues. I just pray I will be here for him until the end, but it's all in God's hands 😊
@@monicac538 not my fuckin cunt parents...they can go to hell...
Sadly, if I treated my parent the way she treated me as a child I would be charged with abuse..... I use my empathy to help others.
@@legoproductions7286 - Bad experience with them? I understand. Be good to yourself if you can. They are the reason why you exist now. Prayers will diminish your angst and hatred 👒!
Care givers are such wonderful, beautiful people!
We’re just normal people
My husband was diagnosed with early onset in 2018, it is so true that it consumes your life. I find myself searching for documentaries like this for advice and what to expect. My heart is so broken, my husband has always been a smart, strong man that took care of his family, to watch him deteriorate is so sad. What's even harder is he refuses to accept his diagnoses or see that he is not the same, and knowing it is slowly killing him, is just so hard, but with lots of love and prayers, we will get through this. Thank you for putting this together, it was very helpful.
Monica C j
Monica C - This is the meaning of; 'in sickness and in health'! Yes, you'll get through and I'm sure he knows he is loved!!😊
One of the hard things for me, as a caregiver for my mom is, when she gets verbally abusive.
I'm a sensitive guy, who suffers from depression, and having my mom get angry and abusive with me, hurts, even though I know it's the disease.
And I feel so guilty, not being able to help, or make it better for her.
Nothing prepares you for having to turn off your instinct, to try to reason with them, and just agree with whatever crazy thing, they are saying.
Also near the end of my own life, knowing I will never have a chance to do anything fun, before I die.
Only future for me, is taking care of mom.
No days off, to rest or recover.
It's not just them that gets hurt by the illness, it's the person who has to give up their life, to care for them, that suffers too.
And the financial ruin.
Maybe you can get rest bite is this available in your Country ?
I am a caregiver here in israel, and dealing with person with dementia is not easy. My first employer have dementia and every night she's shouting and i need to be patient all the time. There are nights that i can't sleep because she's shouting all night. I need to help her to calm herself. I need to play music sometimes just to relax her.. But i didn't work sometimes.. If you really love your work, and i know you can do it..
But i love my first employer so much and its very hard for me when she passed away.😭. Soon i will be uploaded my tribute video for her.. And hope you everyone will visit my youtube for my journey as a caregiver in Israel..
Godbless everyone🥰
This is therapeutic. My grandmother was diagnosed around 2006. She passed in 2015 and it got frightening. god bless all the caregivers .
Thank you thank you thank you Dr Natali! I have experienced just what you described with my brother and sister. They have no idea how fast my mom is deteriorating. When I try to tell them, they just tell me I sound like I’m angry and complaining. But your right a lot of good changes have happened too because my mom has had to let go of her fierce control over everything because she just can’t do everything anymore and I think she’s beginning to realize that. Now she often thanks me for helping her so much. She’s not so afraid to ask for help like she used to be when she wouldn’t accept any help. I try to praise her more for the little things she does. Thanks for all of your suggestions and support. It’s so helpful. 🌺🌼
Similar story. I'm now in another state and my sister is finally learning what she never believed.
Like your mom, I watched her control issues lighten up making it easier to talk with her. Just go along with what shes saying, lol.
My sister finally took her car, so now mom calls both of us repeatedly trying to figure out how to get her car back. Try to talk about the weather, lol
Mr Schaefer couldn’t have said it better!!!!!! I always love advice from people that have never even been in a similar situation. I hate this diseases I much!!!!! It’s extremely hard to cope with and very easy to get depressed from especially a full time care giver. 💔💔💔
The scary part is America is not prepared for the wave of people are getting ready to be in the system for this disease and we don’t have the resources to handle this crisis
You said this a year ago, and look at America now!? I am so glad my parents wont ever go through the system as long as I am alive.
This is something that is so emotionally draining and crippling
.
This is Trudy Contos
Fortunately, as my 92 yo moms memory gets worse, her stubborn controlling attitudes have lightened, and she can be a joy to talk to. Just keep it simple, folks. As long as they are safe, their stories are their truths so no need to correct them. I dont care who she thinks shes talking to, lol!
PHanomaly My Mom did the same. She was so uptight and regimented when we were growing up, and now with her dementia, she is so happy and the most relaxed person compared to what she was... it’s crazy.
Your lucky she's not mean.
As a daughter of both parents having early on set Dimentia, it's so much worse. Dad at 63, Mom at 67 right after Dad's death. NIGHTMARE that dosen't end until they're gone. Sweet people turn into hateful ugly things of dread
I was a young teen when my grandmother first got diagnosed. My dad, her son, was her main caretaker at the moment. I saw him become just a shell of himself, along with my independent, spunky, headstrong grandma. He would get off the phone with her and throw the phone at the wall, even if I was sitting on the couch in front of the wall. He drank quietly and secretly. I took a sip of coke from the fridge once and it tasted weird, so I had my mom taste it and she told me to not drink out of my dad's bottles in the fridge anymore. I was 14. I would sit on my porch with my grandma and she would ask me the same questions over and over, and I didn't know any better, I would get aggravated because I didn't understand why she kept forgetting, and why she was making my dad be so angry and so different. My mom would take me to a hotel with her sometimes overnight to stay away from them both. I poured myself into school and put my whole self worth into my school just so I could avoid home. My dad finally got it, and got another caregiver for her. I was 17 the last time I saw her alive. It was Christmas eve, my dad was at work and my mom took me to the nursing home. I held her hand and she slapped them away. I spent the rest of the holidays crying. She passed 2 weeks before my graduation. My dad didn't smile in any of my prom pictures. I see her in my dreams sometimes. She's not interacting with me, but she's there, she's cheering me on. My dad is sober now. It takes a lot out of me thinking of my teenage years, but I'm understanding. I don't know why it happens, no one deserves this, but you can learn how to be more understanding and gentle. And that's the most important lesson.
What a story-- May God bless your family --- thanks for sharing - I will understand my Mom a bit better now......my mom 84 just started with forgetful disease-- I was shocked in a few months she went from not remembering a few things to blank stares or asking to go to her mother's home --her mom has been dead for about 25 years.. I need to find what she can take naturally to slow down the brain inflammation eating away at her memory -- this is new to me. What a shock-- She has been recently diagnosed with uterine cancer and went through surgery a few hours ago Nov 9 2020- There must be something out there for her-- something natural-- I pray that God Almighty reveal this to me soon in Jesus Name.
I will try very hard to ease my daughter's burden while my mind is somewhat intact.
Excellent video. This should be included in school curriculums as a given part of general education. When things are hidden, people be ome divided. When it all comes out...so many of us have something in common.
Kudos.
What happens when loved one refuses; live on a memory-care center?
This video is an excellent and true picture of what caregivers face. It’s a tough road. These families are doing a wonderful job of facing dementia.
Ive looked at this video over and over to help me as a caregiver. I try to do my best to be encouraging and understanding towards the family.
*DEMENTIA CURE:* Thanks for all these comments and for sharing some of your own story. I am a 74-year-old man, I was diagnosed with Alzheimer’s disease 15 years ago, I always like to use my experience in a positive way to educate others. It is common knowledge that Alzheimer's robs people of their ability to remember. Having dementia for me was lonely, isolating and scary. But when people share their stories, it can provide inspiration, hope and a welcome reminder that you are not alone. Homeocure Worldwide is natural cure medicine. The professional had earlier told me there is no cure, I asked professional to explain this to me? They said it is a miracle. All the patients I have directed to Homeocure Worldwide return with thanks. Don't let drug companies keep you as a slave to their mediocre medications. Don't let them tell you there's nothing that will help you. Today I can say that I'm living life instead of surviving it. For more info, contact Homeocure Worldwide or drmakusm@ gmail. com
I am Helen Inamete Olinville Ave from my heart am so happy to watch these videos to have an idea as a caregiver. I agreed to learn to be good with any of my clients so that I can keep my job
I just saw this on tv last night scrolling through the channels. Such an insightful documentary. Gives me a new perspective on things I'm going through, what I'm doing right, what I can improve on and that I'm not alone❤.
Absolutely beautiful video. My mom passed 14 yrs ago with AD. The years with this sad disease opened up a part of my soul & spirit fully for the first time.
I did my very best to let her know how cherished she was to me. So true it is not always about words spoken but the holding hands, hugging & all physical touch.
God Bless all
the caregivers. 💜
I am a family care giver and i would like to keep the job I have because I want to help someone ,that needs my help the most
Thank you , from the core of my heart, for this post. I’m stepping into this wild world of the aging mind with clients and parents. I so appreciate this sobering yet encouraging information.
I’m really impressed with your comment, if you don’t mind friendship please were are you from?
Thank you so much for this..I suppose you could say I live in a bubble of sorts, I have my own illnesses but nothing like this. No one in my family has been diagnosed with this heartbreaking strain of diseases, nor do I even know anyone with it. So, again, thank you for opening my eyes to this and thank you for those who have taken on the role of caregiver, I don' t know how it could be done without you! While waiting for a cure for this (that had better come soon!!) The respective governments better get their ass in gear and help out each and every family dealing with this on their own. It's plain and simply NOT fair! There should be a committee made up to find out exactly from these families precisely every thing they need to assist them on a day to day basis and then.....PROVIDE it for them!! PLEASE! These loving family members are certainly taking the weight of care off of the respective health care systems, the very LEAST the government can do is pay it forward to them. I can tell none of them is looking for an award of acknowledgement for what they do, they simply want help! Be it in the form of supplies, a break, medical equipment, financial assistance. Please find out what they require and get it to them POST- HASTE! Thank you again beautiful people for all you do xo Lots of love from Canada :)
All my charity finance is going to go into Alzheimer's research now.
Give it to caregiver orgs
@@dommedanielle Not to the orgs, DIRECTLY TO THE CAREGIVERS!
What a cruel, cruel disease. :(
Hi. I call it the Enemy Entity Within. Lord have mercy ... lord have mercy... oh my God. I loathe this thing... disease
Excellent video. This should be included in school curriculums as a given part of general education. When things are hidden, people become divided. When it all comes out...so many of us have something in common.
Kudos.
Well said.
The dog is a wonderful idea!
Thank you for this video. I am the caregiver for my 86 year old husband and have been searching for a facility amid Covid that will accept him as I am wearing out.
I'm afraid to get this disease; I would hate that my family would have to work SO hard to take care of me, and I wouldn't even know I was being an issue. to be honest; if I or any family member got this disease, i can't even begin to describe how sad I would truly be.
I have been caring for my grandma for a while now. My grandad used to do a lot of that, bless him, but he passed away unexpectedly in January 2020. She has had 2 strokes and thus is on the verge of dementia, because more and more areas of her brain are dying off each day. My mum cannot handle it as well as me, she gets angry and impatient. It's understandable though and I perfectly understand when they say "their mood changes daily." My grandma can have great days, she can have bad days. Sometimes she talks about my grandad the whole day. Anything is allowed, however, I need to tell her more often now that she says inappropriate things to strangers, such as the hairdresser. All parts of the disease though. Bless all of us handling this!
I would talk to your mum about being impatient with her own mom. Would she be okay if she ends up with Alzheimer's and you were impatient with her!? 🤔
I’m very scared it’s in my family line and I’ve been around it and it’s a real heartbreaking disease
Very hard! Living it with my 78 year old husband, waiting on a surgery for me for a torn rotary cuff
*DEMENTIA CURE:* Thanks for all these comments and for sharing some of your own story. I am a 74-year-old man, I was diagnosed with Alzheimer’s disease 15 years ago, I always like to use my experience in a positive way to educate others. It is common knowledge that Alzheimer's robs people of their ability to remember. Having dementia for me was lonely, isolating and scary. But when people share their stories, it can provide inspiration, hope and a welcome reminder that you are not alone. Homeocure Worldwide is natural cure medicine. The professional had earlier told me there is no cure, I asked professional to explain this to me? They said it is a miracle. All the patients I have directed to Homeocure Worldwide return with thanks. Don't let drug companies keep you as a slave to their mediocre medications. Don't let them tell you there's nothing that will help you. Today I can say that I'm living life instead of surviving it. For more info, contact Homeocure Worldwide or drmakusm@ gmail. com
Patti Cakes, I wish you all the best in your situation.
Don’t have surgery! It will heal in time! Within one year!
@@carolbell8008 mine was completely torn so I really had no options other that surgery
I can tell you it is the hardest "job" you'll ever do. Ask for help...it's unbelievably difficult to handle alone..
These people are just amazing. God Bless them !
I lost my grandmother over 2 decades ago from Alzheimer's, and my uncle lost his battle with it as well just over a year ago, early onset. My father is now in his early 70s, and he's starting to become forgetful, and I pray that it won't happen to our family again, with him. I even worry about myself, as sometimes even my memory can be a little fuzzy at 35. My heart goes out to any who have had to deal with this cruel disease, and I hope a cure can be found sooner, rather than later.
I am really enjoying your channel and so much of what you talk about helps me get through the day. Could you talk about dementia and intermittent or selective hearing. My husband says he can’t hear but every few minutes will suddenly respond appropriately to a question. He is in a memory care facility and talking on the phone is challenging.
Can't think of anything worse
Hang in there beautiful. My son’s first three days after transplant were so bad. He ended up with high fevers. Take heart he’s doing great 2 years later. He turned 28 this year. You’ve got this. HIM. YOU. ME. WE. “We Got This”. God is good. Go tell your mountain how BIG your God is. 🤟🏻🧡🤟🏻🧡🤟🏻🧡🤟🏻
Dementia transplant? Lol
Heartbreaking.
Took care of my mom (dementia) with my dad for 4 years. Then, just a few months after she died, my dad was diagnosed with Parkinsons. Took care of him for the next 12 years. It is the toughest place to be. If you do not have family to help and you can afford it get help as soon as possible. I was blessed with a great caregiver helper. And my dad finally went into assisted living. My parents were both sweet folks. Wish I had found the Teepa Snow videos from the first.
The thought of someone with dementia who has access to a gun is very scary. At least in the UK I never had to worry about that with my granddad or my mum and her sister.
We've taken all of my husband's guns away but now he's talking about getting a new one and legally we can't stop him.
I would come home and find out he had had yet another big (expensive) accident He shoveled ice onto the hot tub and cracked the top or he reach to take down plywood from the garage rafters but didn't move the car out of the garage...that was a $7,000 "accident." . Another time I heard a big rushing sound and ran to the laundry room to find the water gushing out of the bottom of the water heater like a a fire plug opened on a city street. Water was rushing out everywhere on the floors, the ceiling, and the adjoining hallway... That was an 8 hour clean up project. When he almost hit a boy on a bike (that he did not see) was the day I took away his truck keys.
Thank you for creating this video, it's very relevant in my life with helping my mother fir the past 3 years.
Thankyou. This means so much to me at this point in my moms life💕
Thankyou so much, each and everyone, for sharing and helping those of us with no hands on experience to understand. God Bless you all. XXX
I see you all ,
Amazing People .❤️
Thankful for the family sharing, it's so much help for others
I live with and take care of my mom(74)and dad (80)who have dementia and Alzheimer's. I recently came across cellular ketones. I drink the charged for energy and fat loss. Helps me with brain fog and helps me sleep. I ordered the uncharged kid safe ones and started giving them to my dad who is further along than my mom. It's like he woke up!! He is talking more and more alert!! He loves the flavors. Strawberry, grape and lemon. He asks for his "Kool aid" more often. My mom is still in the denial stage and will not drink them 😭
It's really sad, but the caregiver has to protect themselves from the authorities sometimes because they believe the person with dementia instead of the caregiver. They don't know them so they believe them. You really do have to keep those legal documents handy at all times so you don't get treated like, or accused of being a mean, neglectful, or uncaring criminal. By having the proper documents on hand you'll diffuse an otherwise stressful situation and receive the help and respect you deserve. It's a shame that caregivers who give up their own lives and sacrifice so much to take care of their loved ones have to deal with so much ignorance. Thank you for making these videos to educate people.
Gone through this personally at the beginning of husbands early onset dementia. He would tell the doctors and social workers in the hospital that I and his earlier doctor were after his life, that I tried pushing him down the stairs, that I pushed him onto a hot stove, and a whole lot of totally untrue stories. At the time he still seemed convincing to the people who did not know him before and some actually believed him. I was becoming concerned about ending up in the jail for his lying... and all this was from his illness started suddenly after several mini strokes! All I ever did for him was to help him and am still doing more than anyone would after all the insults! Poor man, he was so totally different before the onset of this horrible disease... God help us both as I am not willing to give up on him for as long I am am on my feet and have him put in some 'dementia home', especially now with the covid situation...
@@emilija74 The main thing to remember is that it's not your husband speaking - it's the disease talking. Your husband is still deep inside him and he isn't responsible for what his diseased brain says, so please don't hold it against him. In my case, it wasn't my hubby that lied, it was a woman I had come in for a couple days a week. I locked up his medications when she told me her boyfriend heard that he could get money for them if he sold them on the street. After that I locked them up and she got mad and lied to the authorities. Thank God they finally believed me. I never hired anyone else to help me again.
@@bgrainger3477 Hello Mrs. Grainger. Thank you for your reply. I know it is the illness and not him speaking but sometimes it is still hard to live with the hurtful words. I am sure you know this too. Thanks for the advice regarding help. I am just in the process of considering some help and your wise words came just in time. Of course the security in the home is an important issue. I will definitely be extra careful now. Thank you again. Good luck with your situation. God bless...