What do I do next?
I am a 73-year-old retired educator, my husband is a 74 year-old man with Parkinson's and he's had it for 16 years. Over the first eight years we still managed to live our lives pretty much the same as ever, we could travel, we could enjoy meals out, and so on. Then he had DBS and that improved the tremors. Since 2020 he has not been able to travel; he used a u-step walker at home and electric walker when we were out. But his falls with the walker became frequent so I got a wheelchair for inside. He has a suprapubic catheter so rushing to the bathroom is no longer an issue, I just drain it every three hours. But now his dementia is setting in, and he has fecal incontinence. The difficulty I have is we have all the equipment you might need, including a walk-in shower with grab bars etc. But if I can't get him onto the toilet and soils himself in his depends, I can't lift him to wash him or clean him when he gets weak and can't stand. We do have home healthcare coming in once a week to evaluate him, but I just can't figure out what happens next. I'm his 24 /7 caretaker, and I do have someone (private pay) come in occasionally if I want to go out. I have access to adult daycare where he attends sitting in his wheelchair and can be with other people, however he does not like it that much. I use respite to go visit my mom who is 99, and 1500 miles away, and I have that in place if I need to go on another trip anytime soon. I want to be with him but don't know if I am capable to do this much longer.
4 Answers
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Due to the excellence of your loving care your hubby has had so much longer and so much better quality of life than most others.
But this is no longer sustainable, and I think you know that.
Your note tells me you do know that.
I would start with seeing an elder law attorney to discuss finances, any protections you as a spouse need to put in place on assets while hubby enters care, so that your own resources are there when you yourself need care.
If something happens now to you, then hubby will be right where he would be going now, but WITHOUT your loving visits. This can't go on. I hope you have support of family and friends. I think the new year is the time to start working on the decisions for the future.
Again, this is further loss. But somewhere inside you knew this was coming. I think it is just about here. I am, again, dreadfully sorry.
Diagnosed in 2015 but had it 2-3 years before. We too traveled and lived well for 6 or 7 years.
My husband Parkinson is different, it is rather Parkinsonism, more of autonomic disfunction.
He does not have tremors or incontinence or dementia.
But it is progressive and it was slow for years then monthly now almost weekly he is getting worse.
Still walks with walker or without sometimes.
But as per his neurologist it is time soon to think of facility.
What you are facing will be worse. I am facing it as well, I know it is impossible to do it long term.
For now he requires very little help but I get respite on regular basis. But the progression with all other symptoms is astounding. Constant pain, infections, neuropathy etc. etc.
After last hospitalization and infection and delirium I know there will be more of similar events or another crisis.
All I can say don’t wait too long, there is no solution other than facility as some point.
Many people on here have and are going or will go through the same thing, so you are not alone.
Lots of good advice here, and many that can help you navigate all this .
Please keep us posted and ask any question any time.
If you haven't already I would consult with an elder law attorney who is familiar with Medicaid, or a Medicaid Planner for your home state. You have been doing yeoman's work and you need to make yourself a priority and do lots of self-care and not feel guilty about it at all. Blessings!