Taking Thiungs Away (WARNING_LONG)

jannieApril 1, 2011

Here's the situation: My husband is now 64, has had progressive MS for years. Neurologist has tested his memory and problem solving, says he has "Alzheimers-like" symptoms. Then in January he had seizures, spent a month in Rehab hospital. Seoizures are controlled with twice-daily doses of Tegritol, neurolgist say's he's on it for life. He got home care for two months, released/discharged from home care this week. He's much bwetter, walking inside with a walker, outside on electric scooter. Due to seizures, he is not allowed to drive for a year. I took away hois keys, lied and said they were stolen at the hospital. But he wants to drive. Now I am happy to run any errands. And he can manage to get to the car using the walker. The scooter comes apat and can go in the car, so I'm willing to assemble and take it apart. Just last night we went out for pizza. But DH says "I should be driving. I'm out of practice." I don;t think that's true. He's discussed it with his neurologist, who put it bluntly. Suppose you lost consciousness and caused a fatal accident. How would you feel? Well, DH is a usually sweet guy, but he keeps asking me "When can I drive?' The Alzheimers-aspect makes him rather surly. When I say "next January" he yells "Shut up. That's not what I want to hear. You're a downer." He also lost his cell phone and I'm reluctant to get him another. He's mainly home-bound. If he needs to make a call, we have a land line. Again he nags. And today he's bugging me to clean out our chest freezer. It's a lot of work. He can't physically help. So I'd have to do it all. I told him "I'll do it on the weekend" and he yells "No, it needs to be done earlier. Friday is the last chance." I'm beside myself trying to keep him appeased. I'm his sole caregiver. I have my own health issues, kidney failure, and I'm exhausted by his demands. A final thing, he lost his watch in the hospital. I think it was stolen. He bugs me to buy him another. We have clocks all over the house. How can I deal with his constant demands?

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This is so sad. The worse part is that there really isn't a good solution for you at this time.

Everyone, men and women both, hate to lose control of their lives. I think men, especially if they have spent their lives in a controlling part of employment, feel this loss worse. He's fighting this loss as best he can. Unfortunately, you are getting the worse of it.

About all you can do is put your foot down and do what is best for the both of you. Letting him drive isn't an option here.

I have only a trite solution for you. Ignore him as much as you can. Don't try to argue, it will make him worse. Just say no, and stick to it. Avoid situations, like going out for pizza, that remind him that he can't do what he wants to.

Buy him a cheap watch and cell phone. That's an easy thing to do and it won't hurt you to do it. Does he need it? Of course not, but it's just a small thing and it will cut down on what you have to endure. Trying to argue about the sensible thing to do, isn't going to work with him.

Pick your battles. This stage of his mental workings is probally going to get worse. Maybe he will get more docile as his condition progresses. "Discussion" often makes it worse as he just gets more stubborn. You can't change his mind about what he wants. Ignore what you can, do what you can, but keep the discussions at a minimum. You don't want to give him a chance to argue.

Good luck!!

    Bookmark   April 1, 2011 at 10:15AM
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Agnes gave good advice. And know that he might not be able to ever drive again, depending on the progression of his dementia. So be prepared to not let him drive again, which means no promises for now. And it's the police/state who take away the driver's license because of seizures, the doctor is just the conduit of the information.

Good luck, and stay strong. You need to take care of yourself first of all. Can you line up some respite care so that you can have a little time off now and then?

    Bookmark   April 1, 2011 at 10:38AM
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I agree with sushipup that you need a break. I'd contact your local MS society and explore alternatives for getting someone into the house for a couple of hours per week so that you can get out and keep your sanity. You don't have to do this alone.

My mom had MS for many years. Once she lost her driving privileges, they never returned. That's usually the sad reality of MS.

    Bookmark   April 1, 2011 at 2:30PM
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Another advantage to having hired help from time-to-time is that the person being cared for very often accepts instructions from the stranger better than they do from a spouse or other more-familiar relation.

I suppose part of that is courtesy to a "guest" and suspect another part is the inability to "negotiate" with a stranger who has duties. Don't actually know, but I've certainly seen it in my own situation with mom many, many times. It also results in mom being happy to see me upon my return and consciously appreciative of what I do the rest of the time. Don't actually know how much is conscious/unconscious. Just know that I've seen the difference. Maybe it would it be like that for you.

I hope you do remain firm about the driving. I live with mom in a retirement community. Lots of older incompetent folks behind the wheel here. The things I see people do on the road on a daily basis would curl your hair. Many accidents and injuries every year caused by people who should have stopped driving a looooong time ago. Serious business.

    Bookmark   April 1, 2011 at 4:11PM
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Be very careful about his moods. My sis knew her neighbor quite well, he was a kind gentle man to everyone. AZ changed him completely. He tried to kill his wife, had her down on the floor, she was nearly passing out when she got away. She called 911 they took him to a hospital for an evaluation and she never saw him again. My husband was the opposite. He was never mean, just short tempered and moody, he became a perfect husband. I hid his gun and ammo in different places just in case.

    Bookmark   April 4, 2011 at 8:43PM
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One more thing. When my husband was diagnosed with Alzheimer's I went to an estate attorney. He told me what I could expect financially. He also told me about the "division of assets". This is very important. The day you put him in a care home, see an SRS rep and do a division of assets. In my state I got to keep my home a car and half the money. If you make less than a certain amount they won't take any of your income. If you have less than a certain amount of savings you get to keep it all. Don't even think about hiding money, if you are caught they can deny him medicaid and a home won't take him. I was very pleased with that situation in my state. They take very good care of the spouse. Also they don't actually take any of your money, you spend down to half then he goes on medicaid. The good part is that you get to live off the top half also, your half is not touched until his half is gone.

I was starting to have serious health problems because of stress before I put him in a care home. Don't do that to you self, it is not always reversible.

    Bookmark   April 4, 2011 at 8:57PM
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this is Jannie, the OP. Man, these answers are depressing me. No, I'm not clinically depressed. Just overwhelmed and run down. Now DH has been seeing me as the enemy, rather than as his life partner/ caregiver. If he gets out of bed, I'll ask "Where are you going?" and he'll answer "Whereever I want. You are so nasty? Don't make fun of me." I don't mean to challenge him. I just want him to know, if he wants some soup, I can go downstairs for him and bring it up to him. I'd rather spend my energy actually making him comfortable.

    Bookmark   April 25, 2011 at 8:26AM
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You may not mean it as a challenge, but he sees "where are you going?" as a challenge. Don't ask questions that he probably can't answer. He's living in another world that doesn't always include you.

I know you want to make him comfortable, but asking him questions that require him to think or make a decision is not a productive way to do it.

If you think he needs or wants soup, go ahead and fix it. He may or may not eat it. Just don't ask him IF he wants some. That requires thought, and he may not always be able to think rationally.

The road ahead is going to be a bad one for you. Try to make it easier for yourself. He may not be able to remember for a few minutes what you said or did. You can't make him more "comfortable." There is just no way of knowing how his mind is working.

    Bookmark   April 25, 2011 at 10:09AM
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I've just finished a book called "Still Alice" by Lisa Genova. It's a novel about a woman with early onset Alzheimer's. You might find it useful. My dad had Alzheimer's and now my mother has it. I thought I knew about this disease, but I learned a lot. It gives real insight in what our loved ones might be thinking and explains so much. My best thoughts are with you. It's not easy!

    Bookmark   April 28, 2011 at 10:58AM
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IMO you have to get away from the frame of mind of actually answering his questions and more into a mood of commiseration.
Lots of "I know" and "That must be terrible for you."
It's a gentle art of... not deflection, exactly, but easing through the moment.

It's more about how you frame comments- instead of "Where are you going?" which is a tad confrontational, maybe try "Is there anything I can do for you?"
The relationship has changed- we can't keep on within the same parameters we have operated on in the past- we have to adapt.
Let him do as much as he thinks he can do. Cleaning up spilled milk is IMO preferable to arguing over who should pour it.
Bad example maybe but you get the drift.

    Bookmark   June 23, 2011 at 6:05PM
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Thanks for all the advice. I have been mostly agreeable to him. I got him a cheap watch and cell phone. If he wants to go in the car, I say "fine, drive yourself." He always backs off. Of course, I know he has no car keys. But he's also reluctant to go alone, so I either get what he wants or I physically take him and his scooter, and he can get what he wishes. Yesterday was horrible. It was our 32nd wedding anniversary. He had an eyeglass appointment, and I planned for us to go out for lunch afterwards. He got bad news at the eye doctor, his retina is damaged and there's no eyeglass adjustment that can compensate. After the eye doctor, he said "I don't want to go to lunch. I want to go home." I drove us home and told him "I'm so sad we can't go out to celebrate." He started to yell "It's not my fault." I suddenly got an epiphany. He's miserable and wants me to be just as miserable as he is. Well, I'm not playing that game. I'm his caregver, but I have my own life. I go out for coffee several mornings a week, I belong to a book club at the library, in short I have interests that don't involve or require him. But I love him and stick with him.

    Bookmark   July 1, 2011 at 3:31PM
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"...wants me to be just as miserable as he is."

I suspect you're mistaken there. I suspect he's merely coming to terms with his own decrepitude and can't yet deal with it. And he may be losing track of his voice's volume and character. In isolation, he's unable to receive the negative feedback he would if he pulled this stuff in public. I suggest that you gird your loins and stand in for "the public" in that regard. Do not accept inappropriate statements or behavior. He needs that feed-back to make sense of it.

Even sick people have to behave. Your understanding is admirable but nobody is allowed to get away with slinging crap. A slip once in a while? OK. But if what you're describing is an overall character trait you're going to have to straighten him out or get away from him.

    Bookmark   July 1, 2011 at 10:00PM
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