What to expect with glioblastoma

[@kikiann2268]

My son passed at 32 from this horrible disease. He died very peacefully at home. He knew Jesus and there was no fear in him passing away. He knew his last breath here would be his first breath in Heaven. His hospice nurse was amazed at how peacefully he passed. One day we will meet again.

[@tombill8591]

To God we put ourselves on Thy feet
Halleluya

[@petermorhead4160]

Love to you and your son.

[@thomasoneill7365]

So sorry for your loss 🙏🙏

[@smiles3500]

can i please speak with you ............. please.. i have nobody to speak with.. mom wants nothing to do with me, I'm dying and can't even get end of life care cause docs screwed me over so bad, blocking the way.. I'm dying and scared and going it alone..

[@thomasoneill7365]

@@smiles3500 You can Speak to me anytime if there is anything I can do to help please ask..... What you are going through is beyond horrible....

[@johnwalters6534]

I was diagnosed with stage 4 of this about 17 months ago.I had brain op,and 15 bouts of radio,then went on an extended trial of chemo,which I M still on,tablet form,5 days on 28 day cycle.I must admit,even tho I am 76,I feel well.I do take my age into account and I dont walk as far,about 5000 steps a day.I have noproblems with day to day living,and still mow my own lawns etc,plus all housework.i am on 450 mg of temolozide,I think correct spelling.I have cut out overseas travel,just in case.see how I go

[@Royalblue228]

Good for you John, that's great.

[@Leezl41]

Thank you for sharing your experience.

[@kimbenjamin5210]

Thank you for sharing your story!

[@kathyr1516]

Thank you so much for sharing this John. Such encouraging news.
I was diagnosed with Grade IV Glio about a month ago and will start the chemo and radiotherapy in the next couple of weeks. I am 67. Blessings to you. ❤️🙏🏼✝️🕯️

[@louisecradick4398]

My son passed from a glioblastoma at the age of 35. I took care of him for the last 3 years of his life. His journey was very much like you explained, with a lot of confusion and agitation. Hospice was a godsend, I wish we had involved hospice sooner. He died at home peacefully, surrounded by family. It truly was a sacred experience. I am a nurse, and now working with many hospice patients. God bless you for what you do.

[@gracie3174]

Oh God bless you both! 🙏🙏💕💕

[@createone100]

💖💖💖

[@Royalblue228]

God bless your son.

[@mrmcbeth]

If you could tell his doctors anything what would you say?

[@susanroot1117]

ER RN here. 7 1/2 years ago my mom was 83 and extremely healthy and active. One day I noticed she had bruises all on her right arm. She kept bumping into a piece of furniture that had been there for 20 years. I was concerned she may have had a mild stroke so made an appointment with her MD. Sent to Neurologist and CT done in mid-December. He called my sister(POA) and explained mom had Glioblastoma in both lobes of her brain and referred her to Hospice of Cincinnati. When we sat down to tell mommy my sister and I were sobbing. She hugged us both and NEVER cried. She told us she had a beautiful life and had so many blessings that it was ok that she was going to die(devout Irish ☘️ Catholic). When we saw the oncologist who is medical director he got all the arrangements together to have in home hospice. We were told at that December 22 appointment that mommy had 4-6 weeks to live(she died at home in her own bed surrounded by 2 daughters and her 5 adult granddaughters exactly 5 weeks later).
My mom NEVER had a headache. We made sure to get mom out of bed every day until 4 days before she died. She did have increasing confusion but loved having visitors. It was like she just faded away.
Just 3 days before she died she became unresponsive. She seemed to have pain if her skin was rubbed(because visitors don’t know what to do so rub the patients arm). I felt like an asshole but had to ask visitors not to touch her 🤷🏻‍♀️.
Hospice nurse came and put foley cath in and a few other helpful supplies. They did offer continuous care services but I said I wanted to do that for her. We finally had to crack the med box for Morphine and Ativan. It was a peaceful death just as she wanted it at home with all her loved ones with her. I gave her her last bath, put a clean nightgown on, brushed her hair and gave her a spritz of her favorite perfume. I was so honored to be able to do that for my mommy who had done EVERYTHING for us.
I was completely broken hearted 💔 for a year. But one day I could finally think about her without literally starting to cry 😢 . We were so lucky. We all had time to say what we needed to and she truly did not suffer.
I still think about her, miss her every day but I believe she still is keeping an eye on all of us making sure we are all OK 😊
***Sorry so long.

[@thisorthat7626]

@Susan Root, what a beautiful tribute to your loving mom. Allowing her to die in her home surrounded by people who loved her, and she loved, was so comforting for her. This is how we should allow people to die, IMO. Blessings to you and your family. Your mom is definitely with you.

[@suesteig3025]

My dad died from this cancer last year. He couldn't walk anymore and he slept alot. My dad decided not to do the treatment and lived 3 months after being diagnosed. He was 72. My dad did pass peacefully. His hospice nurse name was Julie and she took very good care of my dad. I am happy you do these videos. Death shouldn't be the taboo it is. Like you said we all one day will go through it.

[@polinatalmeltzer450]

Perfect ❤ Lots of love! May he be blessed by the God’s breath at His side Amen.

[@RiouxGrandz274]

@suesteig3025 my FIL was diagnosed with a temporal glioblastoma tumor beginning of June. He just turned 73 in august. He had the tumor removed but the very next day got shingles really bad and started having seizures a few days later. Ended up in hosptial for almost 2 weeks and after that he decided not to do any further tx bc another MRI was done and they discovered growth in the midline of brain. He started out with sudden speech issues which have gotten severely worse. He’s now sleeping most of the time. Hospice is involved but he’s home. Not really eating much now and can’t walk on his own. I’m just wondering in the 3 mths that he was alive, how was his decline? We just aren’t sure at this point where he stands with how long this could go on. He was never given a definitive time frame other than at the very beginning the neurosurgeon saying that even with surgery, radiation and chemo….18 mth to 2 yrs is usually life expectancy.

[@PrairieDawnC]

Dad passed from glioblastoma at 69, nine months after his diagnosis and surgery. Prior to his diagnosis he was sleepy, sometimes confused, and a bit depressed, not himself. He got lost driving home one evening and his face drooped. Then he got the correct diagnosis, but a terminal one. He took radiation and chemo, but we're unsure if they bought him *quality* time. His only seizure was at home about three months after his surgery and he didn't go home after that. His mobility deteriorated and Mom couldn't care for him out in the country. He fell in the hospital. His meds were increased. Finally, he was moved to a beautiful hospice centre in the city for his last four months. Mom stayed with him every day and i was with him for a few weeks, sleeping on a cot next to him. It was ten years ago and, Nurse Julie, your videos help me now. Thank you.

[@janesecaraway3995]

I remember my first glioblastoma patient. She was the same age as my daughter and her first name was Jessica too. It was a really hard time. This young woman had been fighting it for several years, but her last battle was very fast progressing and debilitating. It was one of my hardest hospice cases. From Montgomery al 🙏 ❤️

[@ninarines588]

My daughter died at age 7 from this..she never woke up from surgery when they tried to remove as much as possible. She is with the Lord..if she had woke up she would have probably been blind..and she was so afraid the dark...I believe she is with my Momma walking in the beautiful flowers..she loved flowers.

[@Royalblue228]

I am so sorry for your loss, how tragic.

[@Tara........]

I'm so very sorry. There can be nothing worse than losing a child.

[@shirleyspadorcio6182]

Our son was diagnosed with Glioblastoma in October 2019. He will be 56 years old tomorrow. We feel so Blessed we still have him. He’s been a fighter and thanks to modern technology a special device was approved by the FDA almost the same week of his diagnosis. It’s called a Transducer Arrays Unit. Our son first went through Radiation and then was fit for the unit he was required to wear 18 hours per day every other day. Along with the Arrays Unit he had Chemotherapy. In the beginning our son had all the symptoms you described but as the tumor has shrunk he’s now able to ride his bike, walk the dog, drive, and take take care of himself. We feel so Blessed for this Miracle. We also know things could change because Glioblastoma is a deadly disease. For now we have our loving son and we Thank God every single day. ❤️

[@veroreyes3826]

May your son be well, comnfortable and truly happy 🙏💕

[@shirleyspadorcio6182]

@@veroreyes3826 ..Thank You for your kindness ❤️

[@jeanrenn5269]

I was a nurse for twenty years and hospice was something I knew I couldn’t do. Now I have chronic illness that will lead to my death and I can only hope that my hospice nurse is as kind and knowledgeable as you are! Your videos really help me to know that in the end it will be ok!

[@Royalblue228]

Thoughts are with you Jenn

[@E-D-E2704]

Nurse jean ...your the fucking best all my love ...everyone you ever cared for !!!

[@cynthiabarninger5703]

My husband passed away from glioblastoma. He only survive three months. He showed some irritability months prior that we didn’t understand. He had just retired so we chalked it up to that, but it is a hard road between when you find out to when they reach hospice but when you reach hospice it’s a blessing it really is

[@MissVik]

I lost my brother at 49 to GBM, he was given 6 months. After 2 brain surgeries and losing his eye sight he passed after a 14 month battle. He fought every day to the very end. The last week he was in palliative care and he was very confused, restless and agitated and sedation was necessary for his peace of mind. RIP big bro xxx

[@elizabeth2164]

My father passed away 45 years ago from this disease and now a dear friend has been diagnosed with it. Thank you for your work in producing these informative videos. It helps.

[@ktkitty1903]

Back in the 80's, I wish there was someone like you taking care of my mom when she was in the hospital dying completely ignored. We took her home to die peacefully surrounded by love. ❤️

[@AriesAtThree]

I just explained to my mom (92 yo) how I follow and watch your vids. I told her that if I know more about the active dying phase that maybe I won't be so scared and I can help her have a peaceful transition. If it were up to me, we would go together. But I just wanted her to feel assured (?) that I want to be there for her in her last moments. So far though, she's done an awesome job of taking care of herself, which I am SO grateful for. Thank you for all that you do.

[@papermason]

Sounds like my Mom, she's the same age and is doing fantastic. She still drives and cooks, etc. Still with it. Like you I want her to be comfortable, free of pain, fear and surrounded by love.
My Dad's palliative nurse was wonderful, whe was an absolute hoot!

[@Nina-ev4xl]

My brother at age 57 died from this horrible disease. He died broken hearted as he was put into a nursing home and hospice came 5 months after his initial diagnosis. He passed and hospice helped him die with dignity.

[@terrywagner8487]

Nurse Julie, My husband was 42 and in good health when he passes away from a brain tumor. He was diagnosed and passed away within 3 months. He went peacefully with hospice taking care of him.
Thank you so much for doing what you do. It’s very assuring listening to you and seeing your beautiful faces.
Regards. 😢Theresa

[@bethrainbolt9642]

I won't tell you the horror we went through over 30 years ago with my best friend, it was before hospice had all the tools they do now. Just know i really appreciate what can be done at home at the end of life now.

[@pameehanson3866]

My husband has Giloscaroma since 2017 and also has vascular dementia since 2021, this has been a long journey for us and went into Hospice Oct 17th and so grateful for this channel as this has been a long journey and i was his caregiver for 24 years since he had 2 massive strokes, then in 2017 the brain cancer now has the vascular dementia. Please give more information on folks who have long term issues before they can be in Hospice. Caregivers are so worn down and I am so grateful for his home care and Hospice care as I can no longer take care of him and when to let go as this has been the hardest part of my journey.

[@lisaanderson135]

My mom had GBM… she passed 16 months after being diagnosed. This disease struck me and my family the hardest. She was 66 and extremely healthy. She loved to dance and walk to stay fit. All of a sudden she was having bouts of blurred vision and headaches, not to mention fatigue which was unusual. Hospice helped us so much!

[@SandraDeCou]

Thank you for all your videos, I’m learning so much and wish I had seen this about 4 years and 4 months ago! But it’s still helping after the passing of my Father in hospice. I had a doctor guarantee me he would not pass that night, that it would be in the next 2 weeks. So I stayed with him alone first night and he passed within 12 hours after they said he was entering the later stages. What I saw in the 12 hrs was him unconscious and quietly resting it seemed, then faster breathing, enough that I thought I’d let them know…then in 3 minutes he was gone. They told me it was a very peaceful death…at the time I couldn’t believe that…now I do see that it was, thanks to you ♥️♥️

[@ast-og-losta]

Your father and your family is in my prayers. Im glad he did not suffer and his passing was peaceful.

[@sandysue202]

All that you just said, confussion, seizures, pain...yes. My 28 year old son in law lost his life to this after battling it for 5 years. Chemo, radiation, and 3 surgeries later, he was able to walk me down the aisle when my late husband and I married. Then he got well enough to go on a trip to see Vegas and Lake Mead and several other landmarks out west. A week after they returned home, he was rushed to the ER with another seizure and it was straight downhill. He lost his ability to speak, then to walk. His dad stepped in to be his caretaker while my daughter continued to work to pay the bills. That final 3 months was bad. He died in a hospice care center 3 days after he was placed there. By that time he was in a coma and could not even move. It's a terrible disease!

[@sandysue202]

I forgot the most important thing...he knew and loved Jesus. Immediately after his last heartbeat here on earth, he was with Jesus and he was completely healed!

[@connies767]

My best friend died from this 20 years ago when he was 38. He fought so hard and was in denial up to the very end. It was brutal to watch how he went from a very strong, big guy, to someone bedridden and wasting away. It was his death that started my interest in the whole death process. It was traumatic for me then, it does not scare me anymore.

[@proverbs3530]

My husband was diagnosed with grade 4 gbm 2007, 3 surgeries later he is still alive. I am so worried that he is a ticking time bomb. He is 58. I feel so blessed that we have had so much time.

[@jaymoucatel9727]

my grandfather got diagnosed december 2021, he just had his third one last week. he is not doing to good right now . i hope you and your family are okay .

[@ne1124]

Thank you so much Nurse Julie. My mom passed away from a GBM Stage 4 brain tumor. After my dad passed away, she lived alone (she didn’t want to live with one of four children who offered). One day, she drove to the grocery store, but couldn’t remember how to get home. She called her neighbor. About two weeks later, I called to check on her and she sounded inebriated. Thankfully, my retired brother-in-law flew to her home, took her to the doctor and that’s when they discovered the brain tumor. She lived 11 months. My sweet sister-in-law Dee was with my mom every day and my brother-in-law hired a home health nurse. Sadly, mom had to go into hospice, and we all got to visit her before she passed away. Her last words to me, “I love you too, very much”. I hold her words in my heart and think of the many wise things she had taught me through the years. I was very Blessed to have been raised by a mom and dad that really put in the time with us kids to teach us and provide a strong foundation of ethics, morals, thirst for knowledge. I will be glad to see them again when it is my time to go Home. Thank you Nurse Julie, for being such a wonderful teacher, your caring nature, and sharing your experiences in the hospice field. Blessing to you. 🙏

[@JohnsDeb]

Thank you for sharing your knowledge. I’m learning so much and find hospice care interesting. I’d like to volunteer/learn to support the patient and family members. Soon to retire in a few years.

[@happybergner9832]

Brittany Maynard is the first person who's name popped into my mind when I saw gliablastoma. She was famous in 2014 after she was diagnosed with gliablastoma, because she moved fm CA to OR so she could use, "Death with Dignity" meds. She died on Nov 1st after advocating to change the CA law to legalize death with dying.

[@managingmonasmoula9811]

I remember this Brittany Maynard case well. She was so happy with her husband and life as a married woman and wanted to live but this dreadful disease afflicted her. She chose Death with Dignity and went out on her own terms.

[@happybergner9832]

@@managingmonasmoula9811 💕💕

[@EmmyAng]

She was so young and so beautiful…I remember this story. RIP

[@kimizareborns6936]

I thank you so much doing videos on CZcams. Both my parents are in a nursing home. Im an only child so its all me. You helped my mother out. When you did the death rattle video. I told my mother because she has a roommate next to her. She went on hospice and I told her about you and what to expect also the knowledge alone is wonderful. Well very sad to say this past Saturday she started with what you call the death rattle. My mother went right out to the nurses and sure enough that gave alittle time for her family to be called and we're with her until she passed on. Thank you so much for you time to do this. Im learning alot. You honest and raw. People need to know because this will be the only closest thing to try to understand the human dying process. Keep up the wonderful work.

[@nicksg3002]

My dad had COPD, then he got lung cancer which wasn't diagnosed so it metastized in brain tumors. He didn't go through glioblastoma symptoms because his lungs gave up faster. Drs gave him 3 months but he passed away only 2 weeks after. What troubles me is the fear he had of dying. Thank you for sharing with love🙏

[@BUDDYSNORES]

Thank you Julie for the video. I was the one who recently asked you about this on your last livestream. Thanks so much for your honest advice and sharing your experiences. My 56 year old Brother in law is currently in hospice care from this terrible disease. It progressed so quickly with him, it is heartbreaking.

[@em945]

Must be so sad, but wishing you and your family well with it.

[@BUDDYSNORES]

@@em945 Thank you.

[@godsfavor6939]

I really enjoy your channel! Good knowledge 👏🏾

[@mattbarba3993]

How does someone with a terminal illness ASK for hospice care? My mother died of primary biliary cirrhosis. No one asked us about hospice. She died a very painful death in the hospital.

[@johngle_nym-lq4py]

Hi Julie, thank you for your service. I lost my two favorite men on the planet to glioblastoma circa 2016. Those men were Canada's Tragically Hip frontman Gord Downie, who was diagnosed within weeks of my father. Glioblastoma, both, as it happens they were diagnosed and declining and dead right on schedule with each other. Glio-B is nothing if not indiscriminate in its efficiency. Dad was diagnosed in April after headaches, first seizure in June and he died on December 22nd. The longest night of the year. Gord stuck it out a little longer with all of the benefits of a medical system - a whole country - sparing no support and it didn't make any difference. Dad had mom for 39 years, still did but she's a high maintenance person herself. So dad got me. I moved home from a different province, as they gave dad 3 months on the outside. He held on three times that, for what it's worth. (Not a lick for my work, who first gave me two weeks and my banked hours before they gave the ultimatum: come back now or don't come back. No brainer-pardon the pun.) Wasn't even a decision-it was an undertaking that metastasized into seven months. The whole time we were able to keep Dad at home, until a seizure wouldn't break and then the last 3 weeks in hospice. Plug: the Prince George Hospice Society is a private organization who will exist in the town of Prince George, BC in the hearts of anyone who's ever had a family member there. It's a special place, built around a kitchen and managed internally, in terms of operations and the doctors who make rounds there did house calls in 2016. The staff want to be there.
I learned two things in my home care experience with Dad: 1. "Else is worse." as a rule of thumb and house rule, both, that explains why anybody does anything really. People are where they are because else is worse. A path of least trouble and best predictions kind of intention, whether it's a habit or a decision.
It's my crutch so that I don't lose my temper every time someone in my company does complaint. I really, really hate when people do gossip or do complaint.
In the before times when people complain my first instinct was to make them happy. Appeasement. But such people bring 'worse' with them, from wherever worse used to be when they set about proving "Else is worse" wrong. Else is worse, Julie, and when people forget that, they start making things worse, I think just for the privacy. Complaint is the gateway habit to Else not being worse and we don't go there talking.
2. 'Do much no harm with this harness.' A patient in a palliative care facility, ICU, converted spare bedroom or anywhere else where they're in need of systematized help - bathrooms and bedsores and berievement and all of it - 'do much no harm in acquiring a fall arrest body harness. I used mine, with it original use in work at heights and tie-off as a commercial electrician-every single day with Dad. Many times, many trips. I busied myself erecting a series of anchor points en route to the bathroom and evolutionarily above the toilet. Dad in a bathrobe, naked but for the harness underneath, and I was able to wand wash him on and above the toilet, change him for bed or visitors, and leave him within earshot on the toilet, held upright as he was with tension in the lanyard. When he'd forget his manners sometimes, I could leave him yelling on the toilet, hear him quiet as his predicament became his focus, and assist him back to the couch and the TV.
I kept him at home six full months and twenty days, and in December his harness was welcomed by the hospice team, who had to share one harness between many body shapes. They would arrive on their rounds to find Dad in his harness and smiling, no fuss no muss, and thus for any family with a diagnosis of Glioblastoma, get yourself a harness right away. Learning to make the most of it gives you something to do, all of you something to think about, and in my experience, something to be thankful for. We had a harness, me & Dad. We had Gord & The Hip to listen to.. To talk about. Else is worse until it isn't and only then we have heroes like you, Julie.
We. Thank. You. For everything. It's a good life if you don't weaken. And it's still not too bad if you do.
-John M...icrophone Stand who thinks it's a man..
for
Ken 'Dad' Makowichuk
and, Simul-Tragically,
Gord "The ManWho Walks Among the Stars" Downie.
We. Thank. You.

[@powerWithinUs4055]

Bless you, bless you, bless you.
You hit so much information, thumbnail topics, all scary until you said it in upbeat fashion.
Please encourage what I missed with others.
Now know for myself….a neck roll.
Spent fortune on wraps and pillows…none worked.
Use a worn towel. Has to be not picky, sufficient length. Like a hair wash towel, beat up, but perfect for the job.
Helps me sleep by supporting the neck, is easily adjusted. If dipped in an herbal tea and dried, that's good too.
We need these things in the sick bed. Holding up an elbow, closing a side gap, tuck,here and there.
Julie and hospice nurses are angels come to earth.
.

[@njsmkmmsthatsit3518]

My uncle was well into his 70's when all of a sudden he became quite aggressive. Of course they thought it was Alzheimer's, but it was a Geoblastoma. By the time they realised what it was he only lived a couple of days. Didn't even have time to go on hospice.
Many many years ago i had an Aunt (same family) that died at 30 due to Cystosarcoma in the brain stem. She had had it in her breasts many years before and she had just been given the all clear. She woke up for work one morning with vertigo and every time she moved her head she would vomit. She only lasted 10 days. I think a quick death with these sorts of cancers is best. There is no glory in suffering.

[@smiles3500]

can i speak with you .................

[@trilabradorable]

My husband died at age 60 of this beast. Agreed on all counts except my husband appearance changed significantly due to Decadron. He went from healthy to obese and bloated in weeks. Morphine was our saving grace as he was so agitated and anxious. I asked his hospice doc to sedate him and he passed two days later. Thank you Dr. ****❤

[@rebekahbabb6963]

My sister-in-law was dx June 3rd and died Sept 21. She was 68. Could not walk, move herself, feed herself, or toilet.

[@reno145]

My dad had glioblastoma multiforme at 72. He told my mom his arm hurt and was weak. He went to the doctor the next day, and was given 6 weeks. He died 23 days later. He was fortunate. No extended suffering.

[@annaconigliaro2907]

My aunt passed from this back in 2014. It was very tough on the family

[@jennifermorales6557]

My son is currently dying from this disease. I appreciate the information.

[@janepeterson3016]

I am so sorry to read about your son. My nephew died of this when he was 9 years old.

[@BUDDYSNORES]

So sorry Jennifer, my brother in law is near the end also. Very terrible disease.

[@smiles3500]

i believe I had this starting in my brain and neuro really ignroed all my symptoms, seizures, strokes, loosing sensations in limbs, anger reage, acan't think.. feells like dementia... body very weak.. can i speak with you please

[@thisorthat7626]

@Jennifer Morales, sending you and your son lots of love to help you thru this. Every moment you spend with your son is a blessing for both of you. Ask for help when you need it from nurses and doctors. Blessings.

[@Gloucester06]

I so appreciate your wisdom Julie. I was present with each of my parents as they died from different kinds of cancer.
It would have been good to know what to expect, and I think I would not have worried and second-guessed myself so much.. That being said, I felt I had been given in each case, a tremendous intimate gift to be able to be with them. As each of my parents actually passed away I felt filled with grace, and I still feel them in my life to this day. Thank you for what you are doing.

[@Victorfernandez124]

I have a brain tumor it is not inoperable. Thanku for ur honesty on this subject

[@jeraldrice3583]

I am a CNA for a hospice in north Carolina, a nurse and myself were discussing the rise of cases pertaining to glioblastoma......

[@crystalbernard9488]

My boyfriend of 15 years died at 76 from this disease. It was a rather horrid death I felt. He ended up in a "rehab" which was very nice but I feel he did not get real hospice, then again his family was handling it, so they didn't include me in any decisions. His last 5 days were spent gasping for air (he had gotten pneumonia from food going down his airway). His eyes were also wide open. They decided he was not to get any more food or water. I did not feel he was medicated properly, I think he was getting morphine. There was a hospice nurse there each day but she was always a different one, and I don't think she was handling any of the drug decisions. It was horrible. He died in the early morning with one of his daughters with him and when I came over to see him one last time, he was lying there, his eyes and mouth wide open, he did not seem peaceful.

[@nancylang4294]

My much loved husband died at 44 from glioblastoma. Working in the medical field I knew this diagnosis was a death sentence. Everyone was in denial and I kept silent as I knew each person had to accept in their own time. Was lonely dealing with anticipatory grief for 2 years. One day he was with my Mom and said to her "Mrs. Lang some of us get to live longer than others". Then he went and had a shower and was singing in the shower while my Mom cried. He was an incredible man and I am crying writing this more than 25 years later. Love you always Ron.

[@dougmarlow9466]

I'v just recently been interested in your content, it's honest and factual (RIP POPS ) ! NOBODY escapes the inevitable! Thanks, keep them coming.

[@TwinLotusBirthing]

Thank you dear soul for this informational video and the work you do.

[@alternative1999]

I think it would be helpful to explain how patients, maybe elderly, are just in hospital getting treatment .... Then suddenly relatives get the call. We are allowed to visit anytime, early morning or late night.... Our loved one is moved from the ward to a private room.... No doctor or nurse talks about active dying but says obscure things that only clinically trained people recognize as meaning the end is near.
It would help to know at what point the clinical decision is made that they can no longer actively prolong the life of the patient and to set in motion procedures for a likely imminent death.
I ask this as a person who was working in medicine when my sister, who was very much older, died as I sat by her bedside overnight. It's important too to remind clinical staff that if the relative is a nurse or doctor, they must not be treated as one, as someone who knows the relevant medical care. When it is one of our own dying, we know nothing. Our training is forgotten and we are just vulnerable and confused relatives. It's a form of shock. I was confused when on asking something a nurse said I should know better. I could barely string a sentence together.
I think it would be so helpful if you could cover these two topics.
Thank you for one of the most helpful sites on CZcams. I actually was going to apply for work in Hospice before personal circumstances led me to leave Medicine. It's amazing how quickly your knowledge goes when you're not practicing. I know as much as a layman now. However hospital staff always recognize if their patient has a medical background. Maybe it's the way we talk? That doesn't mean we still know stuff though. I know diddley squat about anything to do with hospitals now. The only thing I remember is the unpleasant 'office politics' that are hidden from patients, the bullying, the difficulties of students..... Basically the reasons I wouldn't go back if I could. I heard Hospice is less political. I didn't stay long enough to work there though.

[@SarafinaSummers]

It's also the unnatural calm and resilience.

[@kayfitzgerald309]

My best friend died of a grade 4, after 15 months, in 1999! I miss her,but I was glad I was there for her!
R.I.P. SherieMac!!💜💜💜💙🧡💜

[@ruthgibson5858]

My cousin died from this illness. He seemed fine and looked fine. Within a short period of time, he went into the hospital and was diagnosed. Shortly after that, hospice was involved. He died so quickly! He still looked the same but his health detetiated so fast. It was so sad because he was otherwise healthy. He was 62 years old.

[@jimanderson4495]

Thanks Julie. I do have a good friend who was just placed on hospice with gbm. She is 70 yrs old. This video will help during her final months.

[@Mistress_of_Mayhem]

Thank you so much for doing these videos and explaining these things. It makes me feel better when I hear from You that the things I did doing the hospice care for my Father in Law were right. It was the hardest thing I've ever done, other than burying my own father when I was 8 😔 The hospice nurse came in and actually called what she saw "beautiful" He was very peacefully sleeping 😴 Until he was gone 😔

[@Wisdom-gc]

Yes, my son passed away from it but only made it to icu. 39 years old. He even had 8 strokes, became the mine of at 12 years old. The dr. said he had a body of a 80-year-old. The staff made him very comfortable and pass on 4 May 22 on his brothers 41 birthday. I didn't cry for the joy i feel was he is not suffering, or in pain, every need met my others. I see as yes, I will love him forever, but I wouldn't want him suffering. He was a good son and do anything for anyone, Letting go, and he is in the arms of Jesus. john was very sick for at less 6 months. we made the best of life. The pain was horrible. I will always love him and miss him but know he is in a better place.

[@wendym.serrano3490]

I watched a lot of videos but I really appreciate what you do. My mom just got diagnosed With the glioblastoma about 2 1⁄2 months ago. She is 76 years old. We have gone to radiation and chemo but her tumor is inoperable. Right now I am her primary care giver and also full time wife mother and employee. I wanna do the best from my mom so I'm trying to get a handle and all of this and Your videos really help me help me thank you

[@johnayrey8524]

Can you please do a video on esophageal cancer with Mets to the liver stage 4 terminal. I asked one other time. I have this cancer and want too have an idea of what to expect. I really enjoy watching your videos. You helped me understand what my wife was going through. When she died of pancreatic and liver cancer back in Msy of this year. My wife was only 42yrs old. She died 1 month before her 43rd birthday exactly. I just turned 57 right after her birthday. We were married for 25yrs. I miss her so much. I can hardly wait for this cancer of mine too take me. So we can be together again. I was diagnosed in April of 2021. My wife was diagnosed in February of this year. Please help me understand what's going to happen to me.

[@Jomama02]

Live your life to the fullest while you are here my friend. Don't rush things to be with your wife. Life is a precious gift from God and I'M sure neither one would want you to waste it! I don't know the particulars of your cancer but my husband has stage IV throat cancer. He is on Keytruda infusions and doing very well with it. He was given 6 months, 7 months ago. We know the Keytruda isn't a cure but can extend his life quite some time. Years maybe. Don't fear death as we all will answer to death one day. Maybe discuss this with your physician to get more details or even your hospice organizations near you to ease your mind. May God Bless you.

[@denisemangan1413]

1982 I was working as a Student Nurse in the Recovery Unit-Royal Adelaide Hospital. My friends mother came through-I read her Case Notes & she was diagnosed with Gliaastrosarcoma. I was mortified but I spoke to her & told her I was her daughter’s friend- we only spoke a few words. I found out she had died & she had suffered headaches prior to the biopsy & nobody believed her- even ending up- at one point- in a psychiatric unit. I was blessed go know her.

[@nancylyon-gray3499]

You are doing such a great service for everyone who lives! I just lost a friend to cancer and she was on hospice. I learned a lot. You really hit home with your comment that our bodies are made to be born and made to die. Thank you so much

[@sondramcmahan4832]

My sister died from this . Took her very quickly. Luckily she had very little pain. No seizures. She just faded away. 3 months and 3 days from diagnosis she was gone.

[@carolharris6440]

My husband died from a glio at 63 n in the nursing home in Tennessee ...He couldn't talk anymore but would cry as soon as I would come and I fought with the nurses and the aides to give him pain medication... after a few days they did give him one hydro condone 7.5 mg... I was on 10 mg myself through pain management and I would slip him some once in a while ... he never made it to Hospice ... I was so angry with the nursing home to let him suffer like that ...

[@truthboomertruthbomber5125]

The nurses can’t prescribe. They need doctor’s orders. This is where hospice is so good. They are more aggressive with the pain meds and are experts at choosing the best one. Families don’t call hospice soon enough in my experience. I am NOT criticizing you. We get caught up in these situations that we don’t know how best to proceed with. OJT is tough. You just muddle through. The hospice group that was recommended for my wife has been fantastic. She has been under their care for 19 months so far and is doing great. She is in the memory care unit of a local senior living facility. The hospice company sends out a CNA 3 times a week. The hospice nurse visits once a week.

[@andysuber941]

My mother died from this type tumor at the age of 61. Things got strange fast. It was on the right side so it affected her left side. Since she couldn't feel if her shoe was on her left foot, she bought at least 30 pairs of Ked's in every color she could find since they were lace on shoes and would stay in place. She was a wicked good bridge player and found a special holder for her cards and continued to play AND win duplicate bridge until very close to the end. She decided she needed a new umbrella but ended up buying 10. She tried to give the house away to some random guy. She DID give family heirloom jewelry away. But she only lasted less than 6 months after surgery and pain was an issue. She lost the ability to speak or move and could only grunt or moan. We were given morphine suppositories for her to help with her pain because she couldn't swallow. .

[@blueisis02]

Thank-you so much for educating us! Do you often see Parkinson's patients with Lewy Body Dementia? I'd be interested in knowing what their experience was. Thx for your consideration

[@judyoneal7887]

Yea, GBM is a death sentence for sure. Even though he had an awake craniotomy at MD Anderson, followed by daily chemo & radiation for several weeks, my brother died 9 months after he was diagnosed, he was 54. When his cancer returned he began a new chemo combo but this was brutal & after just 2 rounds he ended up in the hospital so sick & debilitated. Finally with his oncologist’s blessing he stopped treatment & 6 weeks later he died. The 1st & last weeks were bad. Once he got over the affects of the chemo I’d say he had 4 weeks of having good days in the middle. That last week was brutal. He had terminal restlessness that required large doses of 2 medications to finally get him sedated. It took 2 days to get him comfortable, calm, & sleeping. He had some type of IV but they looked like buttons that were in his stomach. The initial doses did nothing. It took doubling, tripling, then finally quadrupling the doses & we were able to dose him as it was similar to a PCA pump they give ya in the hospital for pain control. We did stop his steroid as that was considered to be extending his life. However, we were not prepared to watch him seize so we did not want to stop the Keppra (anti-seizure med) & the hospice staff at the facility agreed to that. It had to be compounded & given rectally but they made it happen. Tim was a very healthy 54 year-old guy who ran 3-4 times a week; we knew it was possible that his heart could keep going for at least a couple weeks. It was a blessing when on day 6 since arriving at Kavanaugh House he quietly took a breath, slowly let it out, and just never took another. It’s been nearly 15 years since I’ve seen Timothy but I believe my brother is with the Lord & I will see him again one day.

[@yvonnesmith2578]

Nurse Julie you are a real live Angel of God! Bless you🙏🏻

[@Warriorsfan540]

Thank you for your videos. You bring a calmness and normalcy which, in turn, makes everything a little less scary.

[@mylittlecoco345]

I have experienced this journey with a friend. he was very agitated but there was periods of joy .

[@jimbob1800]

My wife is in her 40s when we found out she had a brain cancer I was the main caregiver she didn't get hospice until the last couple of months of her life but I took care of her until the time she died the sad thing was nobody in her family ever came and offered me any help offered say to say why don't you go hang out with your friends for a little bit we'll take care of her nobody did that of me I was the only one there for her it was sad thought I'd go before she would I miss her

[@ninamorway5536]

My husband has Lewy Body Parkinson's. He's been in memory care for almost two years, and is generally healthy. He's had dementia for 10 years, and I was his caregiver for eight years. I wonder how long he will live and how he will pass away.

[@truthboomertruthbomber5125]

There is no way to know. These situations are brutal on the family. Just living in the moment has served me the best. Thinking about the future just brings frustration.

[@kimjensen1783]

My baby brother passed from a glioma brain tumor in his cerebellum on 3/9/2018. He was 46 years old. He was first diagnosed with a glioma brain tumor in his right frontal lobe at the age of 29. He had a craniotomy and 90 percent of it was removed. The other 10 % was removed with radiation. He did very well until 2008. He then got the one in his cerebellum. Question: is this the same as glioblastoma??

[@lauraeaton5414]

My uncle had this horrible tumor. His son passed of the same tumor years latter and he was the same age as his dad when he passed as well.

[@sharononeal7183]

A nine-year-old close friend in our church died from this disease. The family didn't call in Hospice due to belief and a promise from various faith healers that she would be healed. But people in the church and family gave support as much as possible. She lived eleven months after diagnosis.

[@sheryldupre-mercier7607]

My father passed from this the day after his 34th birthday. I wasn’t in his life at the time, so learning about this has helped a lot with understanding what took his life. Thank you so much for this video ❤

[@mimime5376]

My best friend from high school passed in January from this. I’m so grateful I sent a text reliving all the crazy things we did. It was read to her by her son.

[@bessiemann7468]

My brother passed away in August 2022 from cancer in his brain He just turned 63 in July He passed peacefully an he knew Jesus

[@suzannemcclure7412]

My best friend, through nursing school, Connie, died from GBM. She opted for surgery X 2..to no avail. So very sad.

[@k8-jb8tg]

My husband is a nurse and I'm an ex nurse, but I volunteer at our hospice once a week to give patients and family someone to talk to. We found out 2 days ago my husband 46, has a large glioblastoma on his right side and has lost !/2 of his field of vision on both sides quite rapidly. we will get a call hopefully tomorrow about how bad it is and any treatment plans. But I'm terrified it will be quickly because of how suddenly he has deteriorated. I'm still just in total shock. Any words of wisdom would help

[@vickikent3341]

Always great content…!

[@emmamlis927]

My best friends dad survived glioblastoma and it was a miracle. He was in stage 4.

[@MiracleFound]

We lost a dear friend to a glioblastoma 9 years ago.

[@GreggBB]

Thank you for this information!

[@maryblumreich9813]

I've known three people who died from this disease. A thirty year old woman, a five year old little girl and a young man of twenty. Awful illnesses.

[@Cluedin369]

Thank you.

[@sandrapearce5167]

Could you do Lewy Body Dementia?

[@ianmosdell]

Julie explains everything very well and I think she looks really nice 😊

[@kenhalfofken9497]

I would like you to know that my Mom was a Hospice founder in central Florida back in the early 1980s. I used to visit her patient's with her, for years. I have many questions and perhaps a few answers. These videos are a sort of home for me. For obvious reasons. How can I help?

[@suzannequigley2925]

My husband passed away due to glioblastoma two years ago in 2022. It took him in three months. He was 64. He was the best husband who I loved dearly.

[@flcarleton1958]

This disease has hit my family 3 times. It started with my Grandfather in the late 60's, early 70's. In the 90's, his daughter, my aunt had it. And finally in the early 2010's, my male cousin had also passed from it. It was on my Dad's side of our family. They all had it later in life, my cousin being the youngest, was in his 50's

[@bethany45101]

My brother is on hospice with this disease and his hospice nurse today said it’s looking like he has days left 😢

[@catherinetweats8050]

Thank you so much for this, I am going through this journey with my sister who was diagnosed a little over 12 months ago. It really helps to know what to expect and has reduced my fear of the future. I would like to be able to discuss this with her but can't bring myself to bring the subject up for fear of upsetting her. Any tips?

[@prosaically]

My sister has gallbladder cancer, and has survived two years since diagnosis, one of those years after she was restaged to IV, when the cancer spread to her peritoneum. She was given a terrible average survival time, and she entered palliative care at that time. Her team offered a social worker at the time, but she didn't understand how much they help and did not add her to the team. Get a good social worker on your team! It is so important! Get hospice on board, even if it seems early. The more comprehensive your team is, the less obnoxious complications there will be when the time comes. Be honest but not cruel, and let her cry as much as she needs to, and let her scream at the injustice of being one unlucky enough to get this horrible stupid disease that will rob her of life she should have had. It sucks! Good luck fellow sojourner. ❤

[@PrairieDawnC]

I'd ask her what SHE wants to talk about. Ultimately, this is her journey.

[@catherinetweats8050]

Thank you both for your wise words.

[@laurierice7687]

Maybe tell your sister about Nurse Julie & her videos? Then it would be up to her whether or not to watch. I lost my sister to cancer, hospice was such a gift! Ask the social worker how to address the issue of talking to your sister about her needs & any last wishes. The social worker can also talk or refer you to someone about your feelings.

[@RomeoH20]

My 45y.o sister who was a medical doctor just passed from Glioblastoma Multiforme March 29th, 2023. It was a phenomenon, a miracle. Please help me understand how someone who was paralyzed and couldn’t move for several months lifted herself up to sit and held her head up…. I just can’t believe what I saw. The hospice nurse said she had never witnessed that in all her career. How did her final moments defy all odds?

[@ssjess2504]

Please do MS. Do MS patients wind up in hospice?

[@marianmartin9441]

Thank you so much!

[@mgmcd1]

Knowledge is power, even when we are powerless. Thank you for posting these. I first learned of this disease when reading about George Gershwin, who passed from this.

[@MountainTess]

My sister died of a glioblastoma. She was three months shy of her 40th birthday.

[@cherylhaskell9830]

Very physically active Mother passed with this. First symptom, enability to walk, evidenced Mother's Day 2006, farewell celebration, 9/11/2006. Surgery was not an option.

[@lindafrost9813]

I just love you for helping us ❤

[@jeffvenables4845]

My mother died of GB in 2010. She was only 70 yo. I was heartbroken as we are only 17 years apart in age, and felt as if we would grow old together. The blessing was that she was diagnosed in late October and was gone by early December. My sisters and I cared for her at home with the support and care of hospice. It was an honor to be with our mother while she was dying. We wouldn’t have had it any other way! ~Cathy

[@cherylhaskell9830]

My mother died from this @ 76. Mom evidenced symptoms on mother's day and funeral held on 9/11/2006.

[@papermason]

I watched a friend's husband suffer with this for 7 months. The last 24 hours I visited him and he was having full blown seisures. It broke my heart. Just before he died he had a few lucid moments, joking with his brother-in-law and telling his wife he loved her. He gave a very broad smile, then passed. He was 48 years old.

[@isitover5549]

My dad died of this in 1985. He was 58 years old. Diagnosed in April, he died on December 2nd.
I had a beautiful, young cousin die of this at age 39 in 2009 and another cousin who died just days before his 15th birthday in 2011.
My doctor and I discussed this and he said that while glioblastomas aren't hereditary, they do cluster in families.

[@bridgetwhittington2222]

Can you please due a vlog on Huntingtons Disease?