My husband refuses to be involved with anything (medical, caregiver, educational info.) regarding my dementia diagnosis. What do I do?

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My husband is in denial that I have Frontotemporal Dementia. After years of my ability to perform my job going downhill, three neurologists, two psychiatrists, neuropsyh testing, blood work, MRIs, a PET scan, and a spinal tap (to rule out other causes); it is the most likely diagnosis but doctor is not 100% positive. PET scan showed some deterioration to frontal and temporal lobes of my brain but very minimal. I say lets be proactive and not wait until my function decreases more before getting involved in Clinical Trials, support groups, educational seminars, etc. This is very disheartening. His job is more important to him than being involved in my health. He did go with me to one appt with my specialist (neurologist in Rochester, NY who specializes in memory disorders) but won't go again unless guaranteed that there is some benefit/treatment for me. Divorce has been discussed and counseling briefly tried. I am overwhelmed by the prospect of divorce. I can't deal with that to be honest. We need to return to the marriage counselor but he won't. He has also split our finances after 34 years of marriage with combined finances. I am so freaked out.

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Freaked, I would be freaked as well. As everybody has said get an elder law attorney to setup the care plan and finances you will need. Your husband may be freaking out because he is afraid of the expense of care for someone with dementia. There is a process, check with an elder law attorney, specialized in medicaid regulations about how to protect your joint assets with this diagnosis. There is a way, and maybe splitting accounts is the only way your husband sees to protect anything. Best wishes to you.
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Thank you, thank you, thank you for all of your support. I have wonderful sisters and a brother who is highly involved in my care (he is a psychiatrist and one sister is a nurse practioner. We did sit down with a lawyer once but then our relationship started on a downhill plunge and we put a halt to that until we figured out if we are staying married or not. I am so sad about this and maybe it is time to run as he just won't face reality or follow through with anything. My diagnosis of Frontotemporal Dementia is based on symptoms, ruling out other causes, and brain scans. My doctor, Dr. Gill at Unity Health Care in Rochester says we need to wait three years to redo PET scan and neuropsych testing which may verify my diagnosis. The ultimate diagnosis is through dissection of my brain after death. I have let my Health Care Proxy (my sister) and its in my living will to donate my brain for research into FTD and any organs that could help anyone.
Thanks for the support you all bring tears to my eyes.
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As the other commenters have already said, get an attorney ASAP and start building a support network independent of your husband. Hopefully you have one close friend or trusted family member who can be your go-to person in matters of health and property. Get your POAs set up with that person ASAP.

And please do keep us posted. You have a wonderful (if virtual) support team here who will be there for you 24/7. Here's a big virtual {{{hug}}} for you. sorry I can't give it to you in person.
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Let me back up here a sec; when you say the doctor is not 100% positive, is he doing further tests to rule out other causes, or is it because this is not a disease that can be made with 100% certainty, ever?

What doctor is managing your care and what does s/he recommend as a course of action?

Who has POA (hint-- if it's hubby, I would change it). I would seek the advice of an eldercare attorney before making any financial decisions.
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Yea, he is in so much denial he managed to get the banking business done.Lady GET A LAWYER.
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Holy Smokes honey - some people just absolutely can not handle crisis - now or future. They never developed a coping mechanism to deal. Yes, lawyer up. Lock him out. You clearly have interests that need looking after.

It would be very hard for me not to be vindictive in your shoes and to run him through a legal wringer to milk every single penny out of every single fund, account, trust, asset, and the dish of pocket change due to you. I would probably be so consumed by anger I couldn't see straight.

I am so sorry. Nobody expects things to turn out this way when we promise for better or worse, in sickness and in health to one another.

Time is of the essence I guess, so you're going to have to decide how much emotional agony you're willing to put into this long term, versus putting energy into setting up your care arrangements and enjoying the good days now. Don't let this fool rob you of your good days. Go to court, get it over with, and move on. You do not have time for anybody who wants to jerk you around.

Please come back and keep us posted.
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It is sad how some spouses will react. For guys, they want to *fix* things, and when it comes to serious illness they can't fix it, so they back away.

My sig other did that with me a few years ago when I had cancer... he was actually very angry at me, like I developed this illness just to annoy him. Turn out years later I realized he was afraid of losing me because he had lost his late wife to cancer, lost both his parents to cancer, and a sister when she was 24 to cancer. Was it fair how he was reacting to me, h*ll no, he knew he was in the wrong and has apologized... but I need ten thousands more apologies :P
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I am so very sorry for you. This is, of course, a blow to him also. Maybe in time he will get past his denial and move into acceptance and support. I hope so!

Meanwhile, see a lawyer who specializes in Elder Law (even if you are not yet in that age bracket) and preferably one in a law firm that also have Family Law specialist.

I am so sorry about your diagnosis. I sincerely hope you have good support elsewhere in your life. You sound very proactive and practical in your approach. I wish you all the best.
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GET A LAWYER NOW!!! If you have kids start calling. If you have siblings start calling,friends start calling. Utilize all available resources. Do not be afraid to ask for help.I am so sorry but when you wrote he split your finances that is a big RED flag for trouble.Keep us updated on how your are doing.
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