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My brother-in-law (age 82) was diagnosed with a gioblastoma of the brain in August. After surgery, radiation treatments and chemo, tumor is growing again and they found another. Basically, it is a matter of when, not if. Within two weeks he has become aggressive, weak and barely there - in fact, he doesn't know what he is doing. The doctor thinks it has invaded his spinal column. Total personality change, walking around like a zombie, incontinent, falling etc. He can't be left alone for a minute. Sedation only works for a while, then he is up trying to find the bathroom. Catheter not an option due to aggression - would pull it out. My sister has been up with him 5 times a night for the past two months, she can't leave him alone, used to get a sitter, but now he is uncontrollable. Her daughter is helping but they are exhausted, it is a 24/7 job for someone who is strong. Hospice evaluated but won't take him because he is aggressive and over the 165 lb weight limit for the volunteers to handle. Not yet bedridden. They will have to hire an aide 3 days a week, if anyone will do it, but the rest of the time, sis is on her own. I'm afraid it is going to kill her. Medicare won't pay for nursing home (if one would take him, unless he could be sedated all the time) which means decimating savings which are needed by the surviving spouse to live on. If hospice won't take him, who will? Awful to ask, but for those of you who have experience with this - how long can a person live after reaching this level? His quality of life is gone, he was a dignified and fastidious and kind man and would be horrified if he was aware of what he is now. I'm so worried about my sister (age 79). She can't keep this up - it is going to kill her before it kills him. This is a horrible situation - the state or fed only helps if you are broke, and if you have a little saved for your retirement to live on, you have to give it all up first to get help, which leaves the spouse destitute. Any advice?

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Oh Amy, that is so sad. Ultimately, good news that he's getting the care and pain relief he needs.
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Amy, I'm sorry to learn of the challenges your family is facing, and am relieve that hospice is now involved and can help your BIL during his last days. I hope this helps your family as well find some peace and comfort knowing that his suffering will soon be over.
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It appears that things are taking their course. Last week they got my brother-in-law a hospital bed and an aide for 1/2 day for weekdays. That lasted only a few days. His pain became unbearable and they were unable to give him oral meds due to his aggression and restlessness and being out of it. They were up all night with him for three days. They finally called the doctor who arranged for him to be admitted to a hospice connected with the hospital. (It turns out that the hospice they were refused was "in home" hospice which is local volunteers. The hospital hospice is paid for by medicare. This is so very sad, and it appears he is close to the end. Awful to say, but merciful, that we are all hoping it is quick because he is in such pain.
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Babalou, I agree. He belongs in the hospital and I would think in his condition the doctor could order it and admit him. If it were me, the next time he fell I would pick up the phone and call an ambulance. Once under hospital care the doctors would know he was not mentally or physically able to return home and send him to a facility. I wonder if, down deep inside, they just don't want to send him away. I don't want to see my sister collapse, and then he will be sent away anyway. Maybe once he is unable to get out of bed he will qualify for a nursing home but still, wouldn't it be better to go directly from a hospital than from home?
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It sounds like your sister and your niece, due to exaustion, are not thinking clearly, and/or don't know the facts. This patient should be hospitalized, perhsps in a psych unit to get meds stabilized. I would call local aps and seek their advice. He sounds like he's a danger to himself and others.
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I was thinking psychiatric hospital also and suggested it but sis and I have never been very close and she has never taken my advice, rather tells me why she can't and dismisses my suggestions. Yeah, I know, but I still care and worry even if I have offered to help them and been told they don't need me to help. Sunny - they are medicating him and I guess he sleeps it off for awhile until he has to go to the bathroom and wakes up agitated. Medicating him won't break my sister because Medicare & insurance is paying for that, its the nursing home she says will. For some reason they are telling me that medicare won't pay for a nursing home - at least that is what they are telling me. I don't understand it either. I suggested calling 911 and getting him admitted to the hospital. I'm thinking it would be easier for hospital and doctors to refer him directly from the hospital to a nursing home when he is "stabilized" because then he would have doctors making the recommendation, etc. I thought medicare pays for the first 30 days doesn't it? According to my niece - "the hospital will just send him him once he is stabilized". I can't believe that would happen in his condition, as he has a mental issue as well as medical.
As far as how long he has, according to the oncologist, it could be two weeks, it could be 3 months - they don't know.
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It's a difficult situation, but I would initially explore two things. Why would medicating him exhaust his wife's savings? He should have Medicare coverage for medication and he can get a medication supplemental policy to cover any that Medicare can't cover. If it's still a problem, contact the Drug company and see what they can do for such an usual case. Certainly, between all of these people, the gentleman should be able to get some relief from his condition. It may be tough on the caregivers, but he must also be suffering with that much aggression and hostility.

Why can't he be admitted to Psychiatric hospital. That is where most dementia patients go if they are too violent to stay in Assisted Care or Nursing home. AND Medicare should cover that as a hospital stay. I don't know this, but I would check into it.

How long does the doctor think he has? Certainly something to keep him comfortable should be available.
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There is more than one hospice. Call his doctor and ask for the one he would recommend. "Doctor Smith recommended we call you..." If that doesn't work call the social services dept at your local hospital and ask for their help. If THAT doesn't work, call Adult Protective Services. Tell them your sister is not safe and neither is your brother-in-law. Ask for an evaluation. If THAT doesn't work, call his doctor back and ask for enough medication to sedate him yourselves.

Don't give up. Your BIL will get worse. Your family desperately needs help.
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Amy, I wish I had something to offer besides sympathy, but I don't know what the answer is, if there is one, to getting help. It seems you've exhausted all possible avenues other than hiring help through an agency.

I don't understand though why the savings would have to be exhausted if he was placed in a nursing home, as I'm assuming he's of Medicare age, and they would pay for most of the stay up to the 100 day limit (my recollection on this isn't precise as we haven't been through it for quite a while). Perhaps someone more knowledgable can clarify. I'm just not seeing how this could be entirely private pay, unless sedation was refused.

And much as I am opposed to unnecessary medication, it might be easier for the family as well as you BIL at this point. It seems he's not aware of what he's doing and in a great deal of confusion. And his caregivers are exhausted. If the end is a given, wouldn't it be easier on all involved to accept this medical constraint and rechannel the care from fighting for him to allowing him to die more peacefully?

It might be an alternative to hospice if they won't take him.

How long it will be before this is over is I think something someone other than an oncologist can't predict. I would ask his oncologist; he/she generally has a more accurate estimate of the prognosis and duration of time left.

My sister's breast cancer did metastasize to her brain, and the complications became worse. I tell you this not to upset or frighten, but rather to prepare you. Each person and his/her cancer is different, so I don't know whether your BIL will experience similar issues, including from metastasis to his spine. His symptoms now aren't anything like my sister's.

The metastasis to my sister's spinal cord affected her ability to walk because it caused a "dropped foot". It was as if the foot was asleep but also had lost all muscle control. She couldn't put any pressure on it. Although fitted with a plastic shoe/prosthetic device, she found it difficult to use and increasingly had difficult walking or standing.

Chemo brain and radiation also affected cognitive functioning, and perhaps worse, she knew and recognized it.

I wasn't aware that hospice had weight restrictions on patients; 165 pounds as a limit for a man seems pretty low to me, but I've had limited dealing with hospice so I don't know if this is standard or not. Others here are much more knowledgeable on this subject than I.

One thing that might help is if some of the family members can take some time to participate in the brain cancer group meetings at Gilda's Club, or in a cancer support group through a local hospital or infusion center. Others in similar situations may have some suggestions.

Perhaps you or someone not involved in your BIL's direct care can go to meetings and share the insights gained with your sister and niece.
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