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?
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.
Don't give up. Your BIL will get worse. Your family desperately needs help.
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.
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.