At my wits end. I am my 58 year old brothers POA. He had a stroke a couple weeks back and now has no movement on his right side which also caused swallowing and speech issues. His mind is still sharp although he cannot be understood. He gets very angry when you ask him him to repeat what he is saying. He has since been moved to rehabilitation hospital for 3 weeks. Second week in he pretty much has refused all therapy sessions. He will have to go to nursing home as he can not so much other than feed himself with his left hand. It’s a roller coaster ride with him. One day he is calm and looks off into space and the next he is mean and cusses at everyone. They do have him on an anti depressant. He also is a diabetic which he did not control which I’m sure lead to the stroke. He’s never said he wants to die, but many days he refuses to eat or drink and so they have started an IV and caloric counts on his food. I’m just not sure what to do at this point. He is so young, but I just know he does not want to spend the rest of his days confined to a bed, eating puréed foods. What kind of life is that. Is he indicating that he wants to die? Should I talk to him about if he does stop all food and drink he will die. I do believe the IV and the meds they give him is what is keeping him alive. I’m just not sure what my role is as his sister is, not to mention as his POA.
Our dad died 3 years ago. He made up his mind he wanted to die and stopped all food, drinks and medication. He just gave up and slipped into a comatose sleep and died 3 weeks later.
So sorry your very young Brother having such problems. If he has decent insurance coverage and a good doctor, you--as his POA--can discuss solutions with both. One of the things he needs most is good Physical Therapy, Occupational Therapy, & Speech/Cognition/Memory Therapy. These therapies are an absolute MUST for stroke survivors; more important than medication or doctor visits. At the hospital where he was originally, there was a Social Services office or Director manned by a Social Worker. That Social Worker was the one who chose the rehab hospital. Once there, a rehab Social Worker must have chosen the Nursing Home he'll move into (they'll have a Social Worker too.) Please talk to all of them. They will realize he's depressed (& obviously the antidepressant is NOT helping--in fact, it MAY be what's making him more depressed. This does happen!) Meanwhile when you visit, help him by moving his arms in tandem (neuroplasticity) as well as his legs. Ask friends, co-workers, neighbors, everybody you both know, to visit him. This is great for the brain. And it is the BRAIN that moves, controls, directs everything in our bodies, and the brain that will bring him back. Good luck.
He was never able to walk, but used his own wheelchair and lived 5 years in a NH. He did participate in Trival Pursuit games, and was so smart with his answers. He read alot and listened to his cd player. The worst thing that was done for him was at the end of those 5 years when he lost the ability to swallow, and a feeding tube was inserted. It only brought him about 4 months more of life, and he missed eating and asked many times why he could not eat normally.
It was horrible watching him waste away like that, but he said he wanted to die, and I believe that if it had been me I would want to die as well. He said he wasn't hungry, and after about ten days he went into a coma and died 5 days later. I hope that if this happens to me, that my POA for health care (my RN daughter) will do the same for me.
I'm sorry for your loss.
Have you discussed with him his wishes? DNR or POLST? these are very important and may give him some sort of control. POLST is more detailed than a DNR. (POLST is Physicians Order for Life Sustaining Treatment)
Your brother may just need more time to process the MAJOR change that has just happened in his life.
At this point all you can do is support him and whatever decisions he makes at this time.
There are support groups for people that have had strokes would he be up to meeting with one of the members? And you might want to think about attending a support group so you understand the thought process that follows.
My dad became one of these motivators and doctors would ask him to spend time with their struggling patients. Maybe his doctor can help with this when he is ready for the next step of recovery.
I believe that every adult in their right mind is entitled to make life-and-death decisions for themselves. Their decisions should be honored. But I don't think your brother can really be in his right mind under the circumstances. That is temporary condition. He may really think he wants to die now, and not feel that way 2 months from now. But he has to be able to make it through those 2 months in order to make that decision. Anything you can do to help him get through this day by day will be effort well spent.
Has he been given a realistic prognosis from the medical team? (It might be too early.) For example, what are the chances he can eat a hamburger again? Is the pureed food forever?
Surely he need not be bed bound forever. What will it take for him to use a wheelchair regularly? How about progressing to an electric wheelchair? What would have to happen for that to be possible? Is any of the therapy directed toward that?
The thing that would drive me to despair is having a sharp mind and not being able to communicate! What is the prognosis for that? Is it likely to improve? Is it time to start looking into the many assistive devices for that? The person who can probably help you most with this is the speech/language therapist.
Antidepressants often take weeks to build up and be effective. And sometimes the first medication prescribed isn't the best one for that particular patient and has to be adjusted or changed. Don't give up on that yet!
Your brother didn't ask for the stroke. He never practiced for it. This is all new territory for him. You didn't ask to be related to someone who has had a stroke. This is all new for you. I congratulate you on reaching out for some help.
As his POA your responsibility is to handle the financial end. Make sure his bills are being paid. You should be able to sign checks with your name and POA behind it. Unless, you are on his accts. so then no problem there. Seems he can make his own decisions concerning his medical wants. You can be there just to make sure he understands what is being said. It's up to him if he wants you to make certain decisions. I wouldn't give up him at this point. Maybe he needs a Psyhic eval. I would trust a psychiatrist giving him meds over an GP which is what the rehabs doctors are.
The thing is, I suspect you're getting WAY ahead of yourself. Your brother's brain has suffered what is called "a massive insult." Recovery from that will be a project over a long time, but that does not mean his quality of life can't improve enormously within the next three weeks in rehab. Truly: with care, support and a bit of luck, he will seem like a different man even next month. Don't give up on him just yet!
First of all, go to https://www.strokeassociation.org/en/life-after-stroke/stroke-rehab.
This site has all kinds of information which I think you'll find very helpful.
But most of all, don't be in a hurry. Your brother's mood is likely to be all over the place; right now he is in a miserable position but this does NOT have to be forever. The human brain has astonishing powers of recovery,* and at 58 he is still young enough to enjoy the full benefits of that. He may never be as he was before, but then again - before, he wasn't looking after himself and I doubt if he ever did feel really great. Wouldn't it be amazing if the outcome of this is actually that he ends up with a *better* life than he had?
Don't push him, don't try to "correct" him when he is angry or down. Step back and be patient; whenever he shows positive signs be his cheerleader; and be his fearless advocate with the staff. Motivating him is the job of the trained professionals in rehab, and with a 58 year old patient they have something to work with.
I'm going to leave it there for now, but please do come back with updates or further questions.
*You may have been told, and it is true, that the brain tissue that was killed by the stroke will never grow back. What happens instead is that the brain creates new nerve pathways and connections to recover function. It will be hard work, but read up on other patients' recovery stories and have faith!
Keptreasures, just be supportive and be there for him. If he feels you are there fighting with him that can make all the difference in the world.
I wish both of you the best of luck & God bless both of you.
Hugs!!