Estranged spouse, now age 72, had 2 severe strokes on the Right last year. Prior to that he displayed erratic behavior over a 2 year period (during that time we separated). Long story, but delusional behavior, financial abuse related to scams, alcohol issues and falls. Had him evaluated by numerous health professionals: neurologists, psychologists, psychiatrists, neuropsychologist. Each one had a different version of what could be wrong. Never a diagnosis of actual dementia. Has been diagnosed with white matter disease, silent strokes, psychosis, ADHD, narcissistic tendencies, delusional disorder, NPH and small vessel disease. He was in Acute rehab, after the first major stroke for 3 weeks with no real progress, then STR after that until 2 months ago when he reached his Medicare maximum of 100 days for rehab with no real progress. Now in LTC in same facility. I’ve remained as his POA and HCP as there is no other family nearby or really willing to help or have a clue what to do, In spite of everything I felt I could not just abandon him. Had 3 hospitalizations including with the 1st stroke and another during one of his hospitalizations. A lot of setbacks, pneumonia, dehydration, UTI. He has use of his Right side, although weak, is able to speak, has dysphagia, and has Left hemiplegia, trunk weakness and incontinence. Has been on a mainly puréed diet with nectar liquids. He needs assistance with everything other than he can eat on his own as long as set up properly. His days are spent between his bed and a specialized wheelchair. Due to the left side paralysis and trunk weakness he cannot hold himself up in a regular wheelchair. Needs to be moved with a hoyer lift. He’s aware of things, can hold a conversation but becomes confused at times and will forget where he is, or the day, year etc. He’s at risk for aspiration so they will not change his diet due to him still being a full code. Quality of life obviously not good but not sure he really has grasped his situation. He’s never actually said he doesn’t want to live. I’ve struggled with all of this as his main support person. I try to visit every other day; other visitors are rare. It’s sad to think he will spend the rest of his days this way and he is relatively young. He may live a long time in this way, it’s hard to say. PT-OT-Speech did work with him quite a bit but seemed to have given up as he did not make any significant progress. I often wonder if he needs more aggressive PT or did we do enough to try to help him. He’s also fallen out of bed in the facility 5 times due to his drifting, sliding to the left in spite of upper side rails, wedges and padding on the floor. Fortunately he’s not been injured. It’s been frustrating and I’ve had conversations with the facility on ways to keep him safe. I know it’s crazy but when these things happen I sometimes think I should try to find a way to bring him home for the rest of his days which cannot really be predicted. I also shudder to think of turning my house into a nursing home. It was basically AL at our home before the first stroke as it became apparent he couldn’t live on his own, AP became involved. I moved him back home (although still separated) and that was difficult enough. I’m trying to live my own life yet feel tied to and responsible for this person even though the history is not great. I’m 68 and retired, I help out with school-aged grandchildren. I know that no one else really cares too much. Just hard to accept that this is his life now and did he get the right help or enough help? And how involved do I stay? Trying to work all of this out.
You might want to visit some AlAnon meetings for a couple of sessions and pick up a couple of their books.
Given that you had already separated several years ago I'd visit once a week on the same day each week (briefly) and concentrate your efforts on the grandchildren.
You have already done above and beyond. The help that he got in the past is behind you. Live in the present.
At some point you have done what you can do and you have done enough?
Does he have children and do they visit?
Thanks so much for your words of encouragement. I did attend Al-Anon in 2023 for about 6 months and I have some of the books. All helpful but in hindsight I would have gotten more out of it if I had started going during my marriage. Estranged spouse did finally start going to AA in Nov. 2023 and stayed sober after a really bad episode (which I think really harmed his brain).
He has a daughter who has teenaged children. Lives about 5 hours away. She has visited when in town which is infrequent. Haven’t heard from her since he went back to his facility from hospital in January. Honestly they are not that close. Her teenage years were rough. Fortunately her kids have been good. It may be hard to keep hearing of or seeing him in his current state and she probably doesn’t want more involvement as far as any responsibility. He was closer to my children and grandchildren as they are around. They visit occasionally when they can. Kids know what went down when he abandoned everyone 2 years ago with his scamming activities so hard to get over although they understand part of it was due to mental illness. They’re more concerned about me so I’m thankful for their support.
It’s tragic his penchant for scams hit his nest egg and all too common. His brain has had so much trauma.
You are doing beyond a kind person’s care and support for your exhusband. I myself landed in hospital three years ago after full time care for my beloved husband after many heart and COPD issues plus shattered and broken bones from his constant falls. My doctors told me I was the road to dying well before him. It took several meetings with our grown children and an elder care attorney to ensure I could return after a diagnosis of Spitzoid Melanoma and its surgeries, skin grafts and treatments. He’s very “independent” but it was carefully explained his independence depended on me, our care arranged in the home and shopping and support services. Therapy was began and is continuing to deal with his despondency and black moods from the limitations of the chronic heart failure and COPD and prostate cancer plus numerous bones and knees broken due to his constant falling.
It was sad and hard but necessary when we laid it out that if I die or leave due to my own health, this house will be sold and he cannot live here anymore. No chance of slipping into squalor and dangerous living conditions or ruining this lovely place we cared for. It’s been hard and I still get glimpses of the man I have loved so much for over forty six years. Yet I have our grandchildren that I don’t neglect because of his needs anymore. Medications have been prescribed to help with anxiety (completely understandable) and black hopeless moods. We both see therapists regularly and that’s helped so much.
The last years of life can be hard!
Take care and good luck!
So hard what you’ve been through and are still going through with your own health. People always say make sure you take care of yourself too but finding that balance can be difficult.
Can’t just turn off the caring but it can consume your life with the day to day problems and feelings with chronic health issues. Thanks for your empathy and I wish you the best for your own health and situation with your husband.
I think you may be feeling a little guilty, don't. You did not cause his health problems. Taking him home to care for him won't help him get better. All it will do is burn you out and make you resentful. When I placed my Mom, everything seemed to fall into place. I felt that was a sign that I had made the right decision.
None of us knows when our time will come. Enjoy what you have left in this life. Enjoy those grands. You have done enough for your husband. I would not give up your POAs. They are tools at this point.
Thanks so much for your thoughts and encouragement. I have been wrestling with all this for quite a while. All of you here are helping me to see it all more clearly.
I often think about that fact that we don’t know when our own time will come. Hoping to move forward and enjoy that time.
So that is for starts. What could be done was done and this is where you are.
You have taken this on as an ex, and I would not have done that. Whatever reasons he was who and what he was, he WAS that. Your marriage honestly was over before all this ensued. And you aren't responsible now to see him "out". He will not recover. He will worsen. You have taken this on, but how often you are there now to visit will likely have little to do with improving his currently quality of life until he does finally die of age or complications, or even of another stroke.
I am so sorry, but none of this is yours to carry. IF you choose to act for him, that's fine, but this should not be the prime imperative now in your life. It's a choice you have made. Nothing you ever DID or did NOT do have a single thing to do with the trajectory that has occurred.
I wish you the best.
You can't do more than what you have done.
You know you can not bring him to your home.
If he has the financial resources if you think more aggressive PT and or OT would help him that could be done. But from your description it does not seem likely.
I would encourage you to get him to sign a POLST. It is more detailed than a "DNR"
How involved you remain is up to you. If you want to no longer be his POA can he legally make decisions for himself? Could he appoint another person as POA? Would a Court have to appoint a Guardian for him? Is there any family that would do this or would there be a Court Appointed Guardian?
Again you are doing far more than most would do for an estranged spouse
We have a MOLST here which is on file. It may be similar. He declined a feeding tube but has wanted everything else done. If and when he deteriorates more or changes his mind it can be revisited.
I will keep repeating your first three sentences in my mind daily!
My MIL was in LTC on Medicaid for 7 years in an excellent faith-based facility where they saw the care as a mission and people as individuals. If you want to help him maybe consider finding such a place (that accepts Medicaid) and relocating him there. Then resign your PoA and allow the court to assign him a legal guardian. My personal experience with a legal guardian was a good one, for my SFIL who refused to accept his Parkinsons or assign a PoA. There were multiple levels of accountabiity and the guardian was acting on my SFIL's behalf very intentionally.
Is he on any meds for depression? If not, why not? This may explain why he's not really progressing in his PT. But at the end of the day maybe he just will never be able to progress.
Bless you for empathizing with his situtation and kudos for all you've done for him to this point.
If you take him into your home, you’ll never have another peaceful moment until he is dead. You seem to have reached a detente at this point. Why create a new situation that most likely would cause you to despise him? Why not strive for peace through separation?
You have done enough. Turn your eyes to the future and your precious grandchildren. You owe this man nothing at this point.