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[olegrandad]

My wife has ALS and dementia. Her daughter got a temp. guardianship and removed her from our home a month and a half ago. Now the guardianship hearing's been posponed another 2 months. She keeps me from seeing my wife, she's convinced the family I'm only interested in money, and she's told my wife when she's appointed permanent guardian she's going to file divorce papers. My wife doesn't deserve this treatment, but she's powerless to do anything. I'm at the end of my rope, too.

[guwainengle]

You need to get an attorney-- I believe that the spouse should have pover over a sibling providing you are of sound mind and able to take care of the physical issues.

G

[jimercat]

My God, there is no end to the problems people face with this disease.

Why would her daughter do that? I realize there are always two sides to a story, but this seems very cruel. I guess you've been blindsided. Not knowing the details of your situation, I would have to agree with G - get an attorney right away before this goes any further.

[liz]

I hate to say it, but this is a good example of why health care proxies are so important. I'm guilty as many of not getting my affairs properly in order............always thinking this can wait 'til another day.
I get that are two sides to every story but cutting off access altogether seems extreme. Good luck olegrandad. Sounds like you're in for a real fight.

Liz

[olegrandad]

I have an attorney. The hearing was scheduled for JULY 13, but was postponed for 2 months because court was running late. I don't think my wife will live that long. Her daughter's main complaint seems to be that I didn't do a good enough job taking care of her. But I was trying to take care of her, work, do yard work and housework, all by myself. Social services was a joke, and no one in her family wanted to help.I did the best I could, but it still wasn't good enough. My wife has gone downhill so much faster since being taken away from me, you wouldn't believe it. I want her to be able to die at home in my arms, but I hust don't think that's going to happen. If she dies, I probably won't even know it for a day or so.

[jimercat]

Have you spoken to anyone at your ALS clinic about this? Maybe they could offer some sort of help.

[olegrandad]

Today I stopped to pick up my wife to take her for a ride as usual and noticed she wasn't wearing her wedding ring. When I asked her why, she said I was cheating on her. What kind of people would take advantage of someone in her condition and tell her these lies? My wife in her normal state knows I would never cheat on her. We"ve both been thru too much in previous marriages. And yet someone is low enough to convince her of these lies. Is there anything that can be done?

[Peg B]

What an awful situation. What about other family members - sisters or brothers of you wife, parents or other children. I am so sorry to hear this. Take Care, Peg

[Icanmanz]

Today I stopped to pick up my wife to take her for a ride as usual and noticed she wasn't wearing her wedding ring. When I asked her why, she said I was cheating on her. What kind of people would take advantage of someone in her condition and tell her these lies? My wife in her normal state knows I would never cheat on her. We"ve both been thru too much in previous marriages. And yet someone is low enough to convince her of these lies. Is there anything that can be done?


olegrandad, I am so sorry to hear about your problems. Do you'll have any children? How old are you guys? Another question, how long have you'll been married? Good luck, and God bless!

Irma

[CindyM]

Hi Grandad-can you tell us more about how sick your wife is? For example, does she have a peg tube, is there a question of venting her? Understanding how far her disease has progressed is an important clue. Cindy

[olegrandad]

I have 3 kids and my wife has 2. She's 54 and I'm 51, so no, we don't have any together. Our 3 yr. anniversary was July 10, and we were together a year before we married. Mike

[olegrandad]

My wife can't talk and has a hard time walking. She's refused a feeding tube. She's on oxygen at night. She's still losing weight because she can't swallow. She's down to 80 some lbs. now, from about 150 a year and a half ago. She's now started to fall easily. The dementia is the worst for her. Her short term memory is bad. She's very paranoid and easily convinced of anything anyone tells her. Mike

[CindyM]

Is she being seen by an AL clinic? They will have a social worker who can help all you negotiate these tricky waters.

[olegrandad]

`The very first time I met my wife's daughter, my wife told me not to jump to conclusions. She said most people think she's spoiled and self-centered, but she's really not. I guess a mother's love can be blind, because that was my exact first impression. She's used to having her own way and I think she's more pissed off that I'd actually challenge her. My wife's family either won't cross her or won't say anything at all. My wifes clinic is at the UW-Madison. Unfortunately the social worker there talked mostly to her daughter, since I only went there with her the first time. On consecutive visits I was let known that there were too many people going along and no room for me. It's a 200 mile drive. Like a dummy, I let it go since I had been taking so many days off work already when I had no one to stay home with my wife during the day. Maybe if I had been pushy and forced my way, things wouldn't be like they are. Too little we learn too late.

[jimercat]

You can still call that social worker and probably in your state there is FREE legal help for people with ALS/AIDS, etc... So I would suggest calling the Madison ALS clinic and asking about free legal aid or look it up on the internet if you feel you've been ostracized by the clinic. At least you could get a free consult.

You are young and she is young. Although this disease does different things to different people, you still have a right to care for your spouse. It's not like you are fragile yourself, unless you have your own health problem that would preclude you from taking care of her.

You have to look into the free legal aid and let us know how it pans out so all of us can maybe prevent something like this from happening to someone else.

[olegrandad]

The best advice I could give anyone, especially people who might be newly married later in life as we were, is don't wait to do the legal paperwork. These diseases can strike without warning, and you can never tell who's going to turn on you. My wife and I talked about things like this many times but never did the legal work. If we had, we wouldn't be in this mess. DON'T WAIT. Mike