My husband has Parkinson’s and was diagnosed five years ago, but in hindsight the signs were there five years earlier, so he has probably had for about 10 years and is in late stage three. In June, he had a fall at home and struck his head, spent a week in the hospital in six weeks in rehab in a nursing home. He’s been home for about two weeks and is receiving in home OT and PT services, but he has also become fully incontinent and of course there’s no therapy that can cure this. We have home health aides in for 12 hours a week to assist with his care, but of course, the worst of his bowel incontinence happens when I’m the only one home so I’m the one who has to clean up the mess. It’s now at the point that exerting himself to stand results in him pooping himself Tonight after two accidents within four hours, I told him I can’t do this anymore and it’s time for him to be in a nursing home and he said he refuses to go back. He has no dementia but is convinced there is a medical solution to his incontinence and that’s it’s not a symptom of his Parkinson’s. I’m so frustrated I’m ready to divorce him and make him responsible for his own care. What do I do?
No-one has the right to make someone else be their caregiver. Not even a spouse.
This was explained to my parents by their primary Doctor. Backstory: My Father needed an operation. Mother would only accept his help (refusing aide staff at home & also respite care) but he needed his own recovery. The Doctor advised my Father that Mother's refusal was possibly more than denial & stubborness. It could be lack of INSIGHT. Powers of reason can be diminished, especially when there are brain diseases or injury to the brain.
Your DH has both PD & a recent head strike. I am very sorry for this.
From the first Google search I found this;"Cognitive inflexibility, a form of executive dysfunction, is a common non-motor symptom of Parkinson's disease (PD)".
(((Hugs)))
Unless your husband is a candidate for LTC (which can be covered by Medicaid plus his SSI), the cost of a facility will be very expensive. Have you considered increasing the hours of in-home help first, to the point where it almost equals facility care?
One has to medically and financially qualify for Medicaid. If your husband's assets (his community share) exceeds the threshold, he will need to spend down his assets first before financially qualifying. So, why not spend it on in-home help? Then you can both benefit.
It seems like the best choice at this point would be an assisted living facility. The ALF my husband lives in currently has 12 residents who have Parkinson's, and they're all doing quite well. The quality of care and life in a good ALF is better than in a skilled nursing facility. And an ALF may cost less than a SNF.
If you want to explore all your financial obligations and options regarding medical divorce/spousal refusal/medicaid etc see a competent Elder Law Attorney - who can also help you with wills/trusts/medical directives.
Best of luck. You've reached a very complicated and stressful fork in the road and you will move past this with knowledgeable support.
Although he is in advanced stage but because he was extremely strong and super healthy, so until about year or so he was fairly OK.
Now, as they say Parkinson has about 40 symptoms and they all show up. No incontinence, I am not sure if it is part of PD. His is more of autonomic dysfunction type of Parkinson so it effects many organs.
For me it is mental exhaustion so I understand how you feel.
My husband is going to AL, he is actually OK with that and even looking forward to it. Hoping he can be in nice AL for at least few years because with advanced spinal stenosis as well he will end up in wheelchair and NH.
We live in Canada, once people are hospitalized as he was 8 times since Dec. Drs and other professionals take it very seriously and are fairly straightforward about placement to do it before it is too late and there is lots of support for caregivers.
They realize at some point even with 24/7 care it is too hard. Prevention of all this is key.
Recognizing I am closer to burnout I got respite everyday, there is incredible understanding of my need to rebuild my life.
Talk to as many professionals as you can, are you sure he needs NH not AL?
It would be easier to convince him perhaps?
Or divorce could be the only option. It will only get worse. Depends on your husband age he could live for a long time, mostly Parkinson does not effect life expectancy or people diagnosed in their 60s live 20 years or more.
To be clear, he's in a diaper, I hope. And is there a reason he can't clean himself up?
There is no medical solution. Although, he can consult with his doctor about having a tube inserted, so all his incontinence mess will go directly into a bag and be disposed. That comes with it's own set of problems, and risk of infection.
His care needs are becoming more than you can manage. The next time he is hospitalized, refuse to take him home, and insist that he be transferred to a Memory Care or skilled nursing facility.
He's going to refuse as long as he thinks he has you to take care of him. You have already told him you can't. And it's going to get harder, not easier.
Can you hire 24 hour care at home? A live-in or caregivers who come in shifts?
Is Assisted Living an option for the two of you to move in together? Where you can get the help you need when you need it, and he still lives "at home" with his wife. Consider it and look into Continuum of Care Communities, which provide added levels of care as your needs evolve.
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