This is the first time I've posted. I live in California and heard about HealthUnlocked so thought I'd give it a try. My husband of 53 years has been diagnosed with BOTH Parkinson's Disease and PSP. Without going into a long story about how we figured it out, here's our current issue. He wants to get a divorce or at least live separately. I've been caretaking him for a very long time due to back issues and surgery, but he's decided he doesn't want to live with me anymore. We have to sell the house because it's too hard to take care of him and the house. So, we are going to downsize. But now he wants to have his own place. Unfortunately, because of his mind the last 4 years, he made some bad decisions and we have less than half of what I thought we had 2 years ago. It was stunning. So now, we both must live off the proceeds of the house AFTER paying off the mortgage and some other commitments that he got us into. Has anyone experienced this with their spouse? I just don't what to say to him anymore. We are barely speaking.
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Orangetrunk
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Hi Orangetrunk,You're probably / hopefully aware of the negative influence that some of the aspects of PSP/Parkinsons may have on behavior, judgement, and personality. It seems possible that the current problems would not have transpired if your husband's judgement and ability to reason had not been affected by his disease processes. You made no reference to the nature of your relationship prior to your husband's diagnoses or of any legal plans that you have in place. Maybe it would be a good idea to consult with a lawyer who specializes in geriatrics and to also have a check up with your husband's neurologist with the focus being on developing a plan going forward with referrals that address what each of you will need . It would appear that qualified professional guidance is necessary to assure that there is a plan for your husband's care . Is your husband's ability to reason or behave rationally in question ? Are there any other family members who might be able to be of assistance ?
Lots of questions that need effective answers it would seem. I wish you and your husband success in getting the professional input to help you both deal with the issues you face.
Consulting the PSP and Parkinsons support groups in your area may also be helpful for ideas/referrals. Don't be afraid to track down help that you need.
Changes in mental capacity can be insidious, coming in slow increments before diagnosis. Poor impulse and emotional control are common. Trying to take care of someone who doesn’t recognize or appreciate the efforts being made to keep them safe and well, and, worse, getting agressive and angry, must be just about the most difficult ordeal there is. Carehope is right, you need professional advice. I hope you can find help. Take care of yourself.
Carehope's reply is right on. Take that good advice. I noticed changes in personality as well as poor decision making well before my husband's diagnosis. I simply attributed them to advancing age. In our case, I had been taking charge of our finances for many years before his illness began, so I thankfully had control and knowledge of our affairs. Caretaking is very difficult in our unique situation; I never could have imagined what it is like and I have a new appreciation and sympathy for those who share my circumstances.
Dear Orangetrunk. My cousin's husband (in Canada) did not have PSP but developed dementia. He was managing all their finances and lost most of their money (he was day trading) before she was aware what was happening. She went to her family doctor, and discussed the problem, and he initiated a capacity assessment for her husband which resulted in her being able to have the bank accounts in her name, and him not being able to do financial transactions. He also was able to gain her husband's trust and to help him to understand what was happening.
I don't know if this story is of any use to you, but I certainly second getting professional advice both medical and legal.
As well as hopefully getting help in those areas, it sounds as if you could do with emotional support. Is there a California equivalent of our British PSP association--or others places you can reach out for help to support you through this difficult journey as Carehope mentioned? Do you have children, relatives, friends who can help? Wishing you the best to find a way through these most difficult circumstances that this dreadful illness is imposing on you and your husband.
I'm also wondering what your husband was like before this illness, and if there is anyone he trusts who can help support him? If he can, perhaps he might soften a little.......although that might be a vain hope.
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