End stage GBM; do patients always sleep during the last weeks?

I've been studying the symptom timeline on brainhospice.com and in many symptoms my brother is in his last weeks. But he is not sleeping much. Instead, he is often awake and not happy with his care, wanting something ? but not knowing what that something is. He is getting low dose oral morphine for pain control; Ativan, sleeping pills,etc. He can have Haldol but the one time he had Haldol he had hallucinations and it seemed to make his agitation worse instead of calming him.

My brother's original tumor was in the frontal lobe. I've been doing a lot of research on injury to the frontal lobe and he is displaying so many of the symptoms/behaviors of frontal lobe injury. That explains "why" he acting the way he is but it doesn't make it any easier to watch.

Watching a loved one die of any kind of cancer is difficult but having that cancer alter his personality so that he says/does things that he would never have said/done before it just pure torture.

I wish my brother were sleeping most of the day. My greatest fear is that he will linger in his present condition for weeks or months.

Background: My brother has been bedfast for more than three weeks; needs total care. Hospice comes to the house almost every day for some type of care. The cancer took his right side and the Decadron (?) and cancer took most of his left side also. He was dignosed in June 2010 and has outlived all his doctor's expectations.

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My husband didn't seem to sleep more even with all the medications he was on. I could tell he was getting worse by the deterioration of the motor skills and memory lapses. Of course, he only lived one month after his initial diagnosis and surgery.
Sorry your brother is experiencing this horrible disease.

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Thanks for your response. I'm so sorry that you lost your husband so quickly.

My brother lost all motor skills (except for limited use of his left hand/arm) a month ago. He needs total care and is having memory and speaking problems. I'm sure it was horrible to have your husband deteriorate so quickly; it's also horrible watching someone linger when he has no quality of life.

I hate this disease. My brother who was a very private person who took fastitidous care of himself now has to depend on his wife and me to provide his care and has strangers discussing his most private bodily functions.

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I'm so sorry to hear about your brother. I lost my husband to GBM three weeks ago after 11 months.
he became bedbound for the last two weeks, he did sleep a lot, stopped eating, his only intake was popsicles. Is your brother still eating?
It's a grueling thing to watch, but now that he's gone, I'd do it over and over again to have him here with me, selfish, I know.
I pray your brother has a peaceful passing.

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Hi Jerseyjbk, I'm so sorry about your husband. I read some of your posts on other discussions. This is a horrible disease.

My brother is still eating small amounts. Yesterday, he sent his wife to McDonalds for a McDouble burger. Other than a bit of ice cream that's all he ate yesterday. He takes a spoon or two of applesauce with his Decadron. He used to like popsicles but he says they taste too sweet now. Not sure where that came from.

The physcial care for my brother is hard but his lashing out in anger and agitation is infinitely more difficult to take. I slept at their house again last night and gave him Haldol (hospice prepared syringes to be given orally) and it seemed to calm him and help him sleep.

My brother and his wife have no children and a limited support group. His wife and I are his only caregivers other than the hospice people who come and go (without them we couldn't do what we're doing). I'm trying to persuade his wife to hire night nurses to care for him so she and I can get sleep. She's very resistent to having a "stranger" in her house. I'm not sure how either of us are going to get through this without outside help. I'm 67 years old and I'm worn out from the physical and emotional toll this illness is taking.

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Sorry for all you are going through. My husband was diagnosed in June 11 . He is very weak and sleeping a lot
but has never experienced any pain for which we are very grateful. Thank you for the brainhospice site. it may give
us indication of when the end is near ....so hard to deal with it.

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Thankfully, my husband was not affected that way. He was always very calm,and thanked me for doing such a good job. I would always say it was my pleasure and I know he would have done the same for me.

Try to remember, it is The monster (GBM) not really him.

xo,
joan

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Hi Joan, I know it's not him but the cancer that's making him act the way he is acting. But it's still very hard. This cancer is so evil.

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sisternancy: Summary: My wife died 2 months ago from a grade IV GBM. DX was June, 2010. My recommendations are based on having gone through the entire cycle as a caregiver...

You wrote, "I'm not sure how either of us are going to get through this without outside help." It seems to me from your writing that your mental state, and perhaps that of your sister-in-law, is suffering due to the weight of this responsibility. If so, you are violating the first rule of caregiving, which is to take care of yourself. It is very true that if you do not take care of yourself, you cannot properly care for your loved one.

Part of what you're feeling is not just the mental and physical fatigue, but the lack of control you feel over the situation.You need to be stronger with your brother (and not be intimidated by anger or other outbursts) and your s-i-l and draw the line with them and start taking control of the situation. It will be better for everyone.

Best wishes,

Steve

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Sisternancy- I know what you are saying. Oh boy do I know. My 39 year old husband was dx Jan 06 on my birthday after a grand mal seizure. His too was in his frontal lobe. He had surgery and went on trials, which for him worked up until last fall when it began to show up again. He had another surgery (again frontal lobe) but within weeks, it was back over both hemisperes in the brain. He went on Avastin. It worked for a bit but then it begin to grow again. He went on other stuff (he has been on just about all of it) but in August... well nothing left to do.He did a lot in those years and checked off a lot of stuff he always wanted to do. For instance, when he was done with the first surgery and radiation, he hopped on his Harley and rode all the way to the Pacific ocean, alone, camping along the way. He went elk hunting in Montana. He went fishing all the time. I stayed home and supported us. We live in the Midwest... But he changed. His emotions, his communication, all changed.

My husband has always been VERY independent. A doer, not a talker. Brilliant, rapid fire thinker and the best problem solver I have ever known. A fighter, which has helped him with this horrible battle, but now, not so much. He was always in motion. He was always blunt (not cruel but too honest). He is not cruel to me but he still wants to do things his way. So he tries to get out of bed instead of use his urinal. And he falls. He just fell today. His son is here and he picked him up off the floor, I cannot.

I too am a very private person. Hospice just started last week and I am thinking they are going to have to step it up as he seems to be hastening his departure simply because he does not want to be this way and with him, his force of will will do just that. Hospice is wonderful (though they have done nothing yet for his care, I do it) but it feels like a home invasion to me. Unreasonable perhaps, but honest.

I had to get pretty stern with him today. I asked him in a pretty strong tone if he wanted to go to a home, or stay in our home. I told him, if you keep insisting on doing things you should not, cannot do, I cannot keep you home. I do not have money for night nurses. I will not be able to pick him up off the floor. I no longer get much sleep and I am exhausted, sad and angry every day.

You are helping your sister, bless you. But I agree with EdRibose. You may have to get tough. If you cannot, perhaps say something to hospice. They are there to help. If you tell them of your frustration, hopefully they will offer some assistance, even if it is to get your sister to see that although she is a private person, you need help. As strong as most of us are, we cannot do this without help. Tell her that the care her husband gets will be better and he deserves that. Make it about her husband. You have to be OK to take care of him. You will not be OK if you are exhausted, frustrated and hopeless. I am a very strong woman. But it took even more strength to say, help me, please help me.

I firmly believe that brain cancer is the cruelest form and his doctor once told me it was for sure. Our brain is who we are... I had some idea (because of other people telling me about their loved ones dying from a different cancer) that the last time would be time for love, laughter, tears, closure. I was wrong. My larger than life husband lies in his bed, staring at nothing and there is no hand holding and I love you's to be found. I only get tiny, fleeting glimpses of the man he was, the man I loved more than anything. They are gone before I even note them sometimes. Then he gets it in his head he should get up and he falls.

My fear too is that he will linger on like this. I used to be horrified of him dying. I could not imagine anything worse. Now I know that was wrong too. This is worse. I pray every day that he goes, rather than remain like this. I feel bad for that sometimes. But I am getting over that too. There are worse things than death. And this is one of them. I know that will bring a fresh, new pain. But I want peace for him.

Speak up if you can. If not to your sister, tell hospice. He could go on like this for awhile and if you do not get your rest and some 'you' time, you will break down. He needs for both of you to stay strong so you can see him out of this life with as much dignity and care as he deserves. This is one of the hardest jobs, if not the hardest, in the world. You would not go to work on no sleep and suffering. You certainly cannot hope to do this without taking care of yourself.

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Above post... when I say sister, I mean sister in law but I am guessing you know what I meant. :) Blessings.

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Hi tthree, I'm so sorry for what your husband and you are experiencing. Brain cancer is truly a cruel way to die. Was your husband's diagnosis gbm? If so, he survived an incredible amount of time. But, I know, that doesn't mean too much right now. My brother was dx in June 2010--his surgeon told him that average life expectancy was 18 months after diagnosis.

Since I wrote, some things have changed with my brother--but not much. He is no longer agitated to the point where he yells at his wife and me. I think some of this is due to the morphine and Haldol that hospice put him on. Now, most of the time, he is quiet, calm, gentle and even sentimental at times. (Hopefully, your husband will get to that state also, tthree.) Last night, he told all of us--his wife, me, my husband--how much he appreciates what we're doing for him. Two weeks ago, he was yelling at us that we weren't providing the care he needed. He still has times of anger and agitation but nothing like several weeks ago.

My SIL still refuses to have any night nurses. When she made that decision several weeks ago, I backed off and told her that I'll stay at their house one/week (before that I'd been there 3-4 nights/week) but that physically I can't handle more than that. Since then she has been sleeping on the sofa next to his hospital bed in their living room. My brother has been having very quiet nights so this is working out okay. I just pray that nothing happens to my SIL because I couldn't provide total care for my brother.

I don't know if you know about the brainhospice.com website. It has lots of info about endstage gbm including some symptom timelines. I refer to those timelines often but they have not been very accurate for my brother. For more than two months, he's had most of the symptoms in the 2-3 weeks before death. Except, he is not sleeping most of the time. Again, my greatest fear is that he will linger bedfast, barely eating, losing mental capacity. He has no quality of life any more and he's asking us to pray that he can go.

My brother also had many falls before he became bedfast. He often fell at night trying to use the urinal; he fell in the bathroom, in the hallway, going up the stairs to their house (it's one of those homes that has steps inside the front door that go up to the living area or down to the basement--totally unfriendly to a person with mobility issues)

I hope that you have a good experience with hospice care. Without hosice, my SIL and I could not provide care for my brother. At this point, someone from hospice is coming every day including the weekend. My brother has had a catheter for five weeks. He also has pressure sores on his backside. At one point, he has steroid-induced diabetes with blood sugars of more than 400. For several weeks, we had to do glucose sticks twice/day. He also had a rash around his waist and hip area that was tentatively diagnosed as shingles. I feel so sad for everything he's been through. I just want his suffering to be over.

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ttree, sorry I didn't spell your user-name correctly in my post.

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It's Ok... :) Yes he has GBM. He truly is a rock star among the survival rates and I am grateful for that extra time. At DX they gave him 6-12 months.

I am sorry that your SIL refuses to use that help. I do hope that you are not running yourself right into the ground.

I will check out that site. I am sorry that you, all of us, has to go through this.

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ttree and sisternancy,

I agree that brain tumors are the worst form of cancers, not that any cancers are any joy. Unfortunately each person experiences it uniquely. In reading all the posts I find that our previous life experiences, our personalities and our outlooks on life influence how we are able to handle it. I understand the need for privacy, but also encourage the full use of hospice. In our area hospice is a wonderful resource with willing volunteers to help with almost anything, including respite for the caregivers. Perhaps sisternancy your SIL may agree to allow a volunteer to sit with your brother so that you both can get the necessary rest.

Ttree and all other caregivers: I found the brainhospice site informative but is based on one person's experience. Perhaps we all should start gathering the same data, keeping a journal of what we observe over the weeks and months. I would be wiling to compile the data if you are willing to share the information. It may simply validate the wonderful information found on the brainhospice site, but it may also shed some light on the randomness of the symptoms. It may be useful to list the behaviors by location of, and the type of brain tumor, age at diagnosis, time since diagnosis, treatments (surgery, radiation, chemo, etc., and supplements used. Obviously, the more input, the better the data. If anyone thinks of other items to track, please share with us all.

I have been truly thinking about how the medical community handles brain tumors. There are some providers who are stellar, and those who should hand over their medical license. In fairness, this is not something taught to the average healthcare provider. Perhaps the data we gather could be presented to medical/NP schools to augment their education. If enough are interested, I will start a new discussion thread to begin the process. If I end up publishing the data, I would ask for each person to share their name to give credit to the amazing people who live through this horror (if you are willing to share your name;))

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Hi all- Random is a perfect word. My husband has been pretty good, until yesterday. Then it was awful. He is losing ground rapidly, like a bullet train in other words. He went from Hospice saying months instead of weeks, to probably a couple weeks to days now. All in 24 hours. He went from getting out bed to let the dog out and using the toilet to on the floor, on his face, scared. Agitated. We had to up his dex and he is also on oxycondone and ativan to calm him. Horrible.

Perhaps we should start journeling? Is that how you spell that? Is it even a word?? I am so tired I cannot even think today.

I agree, hospice is wonderful. I could not do this without them.

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ttree, I'm so sorry about the rapidness of your husband's decline. And I agree random is a key word. Everyone's experience is so similar and yet totally different.

Unlike your husband, my brother has been bedfast for 5 weeks, needing total care, can't turn himself and can barely hold a cup with his left (good) hand. His decline has been incredibly slow. There have been changes in these past five weeks but nothing dramatic. It seems like he stays in each symptom on the timeline for a much longer period than normal. I fear we could continue this way indefinitely. My brother, and we, are praying that the end would come quickly. This is no way to live.

On the brainhospice site, it does say something to the effect that those who have had a longer battle with the cancer and who have done well for a longer period of time may have a slower decline. That would describe my brother. He was dx in June 2010 and did well with NO deficits for 20 months until February 2012 when he started to lose the use of his right side.

When my brother went under hospice care five weeks ago, I asked if they have any idea how long he might have and they told me possibly three weeks. So I think they are surprised also that my brother is still here.

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Hi all

still thinking about compiling data. I have a very close friend who has her PhD in phenomenology. This is research about lived experiences. Instead of quantifying data, it looks at the quality of the experience. I'm going to ask her about helping with this project. It may be our way to let the world know about the profound impact of brain tumors.
Liz

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Sisternancy- again, random. J was DX Jan 06. He has been at this for over 6.5 years. He was strong and well up until it came back last fall. He rode his Harley to the Pacific and back home, alone after his first surgery. Over the mountains, camping under the stars. We live in the Midwest... so very long trip. He went on long fishing and hunting trips in Montana. He was him. Young, strong and healthy with no deficits at all. You would not have known except the huge scar on his head. I am sorry that his and your suffering is ongoing.

He was doing so well, we chose to sell our home and buy an RV and go gypsy. Had a house auction, sold our home, my business and bang, the tumor, after nearly 6 years came back. We were stuck and I am paying for that dream now, big time.

That is how he lived though. Instant decision and no hesitation. I think he is chosing to die his way. He chose, 2 weeks ago to stop. That he was done. Perhaps people die as they lived?

Golfwife, I love to write and share. I think your idea is a very good one. Because no one truly understands this until you are in it. I did not truly understand it. I had an idea but.... it just all sucks. There are no words to describe this particular hell. Right now I am nearly keening in pain over this and I am so tired. But one day, I will rally. I like the idea of it.

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Hi Sistermacy,

I wonder if maybe we could email sometime. I am watching my father in final stages. Failed chemo and radiation and now paralysis in hand and leg, and don't feel like I have anyone to talk to. I am only child so it's tough. :/

Anyway if you wanted to talk would love to email. I don't know what to expect or how to deal with this.

-a

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Oh my....Even though my husband died one month ago yesterday, I occasionally look at the posts here since I read them sometimes earlier...
I just want to reiterate that there ARE others walking this path....it is SO painful, unpredictable, exhausting and sad...(and yes also loving and joyful sometimes too!!)
Golfwife, I LOVE the idea of compiling more specific information for folks who will be walking this path...I, too, was obsessed with the Brainhospice website and found it comforting and helpful, but my husband's path was a little different (he DID eat and did not really sleep as much in the last part as I expected, for example....he seemed to be in the 2-3 week phase for 2-3 months!!)
His diagnosis was August 2010, left temporal parietal, had surgery (could not remove a lot), radiation, temodar (for 11 months) then avastin for 6 months...
I can share a lot more if it would help anyone. He did defy the odds. He was amazing but he also had personality changes and it was EXTREMELY painful for me to go through...(did I get the extent of that pain across??) And yet he was also amazing in his love of life and his family and me....it is terribly sad and we are all trying to recover now and go on with life....but it is ever changed as are we.
I am happy to share personal contact info if it would be helpful and invite any questions if I can be of help.
With regard of all of you...
Nancy

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