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 Hi I am new to the Forum 
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
Post Hi I am new to the Forum
My husband was diagnosed with Parkinson, in 2002, and Lewy Body this past August. There were several symptoms of Parkinson's that he did not have, such as off periods, nor did he experience a lift from his medications, they tried to ween him off of Carbidopa/levodopa, but found he did need it. When Lewy Body was first mentioned, I and our kids all hit the internet to see what exactly Lewy Body was and the symptoms of it. We found that symptom by symptom Lewy Body was the what he had.

He doesn't recognize me a good part of the time, thinks there is others like me that come in to care for him, I am trying to arrange some respite care, and he tells me that he knows several people who could come in to help him, that they all do things just like I do. They look like me also.
I keep telling him that the people that he says look like me, are hallucinations and that they do not exist. He however is sure that they do. I will not lie to him about he hallucinations, or anything else, we have discussed that when I can no longer care for him, he will have to go into a nursing home, and he told me last week that when he goes into the nursing home, he wants a Bose radio, CD changer, and headphones. Personally I will need a computer, with a broad band connection.

Reading the messages and questions in the forum is as if I wrote them, so many are problems, and questions that I am having. I know that this will really helpful, because if you haven't been a caregiver or family member of someone with Lewy Body, it is hard to understand how the symptoms can change minute by minute.

He has problems with all of the ADL's and needs help frequently. He still has his quick wit, and sense of humor, there are times when he seems like his old self. Those times are getting further and further apart.

Mary


Sun Dec 06, 2009 5:17 pm
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Location: SF Bay Area (Northern CA)
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Mary,

Sorry you've had to join us here. Who is the MD who did the diagnosing, and would you recommend him/her?

Actually, these are not hallucinations, but are delusions. This is called Capgras syndrome where you are replicated many times over -- there's a real you somewhere but lots of imposters. People cannot be talked out of a delusion. It's fruitless to try. I don't think you have to lie about it; I think you can simply avoid the subject. Redirect, redirect, redirect.

Sounds like you've paved the way for an easy transition to a care facility. Good for you!

Robin


Sun Dec 06, 2009 6:21 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Mary, You wrote our story. Frank thinks there are 3 of me. Gerry, his wife and the other two. He's usually upset because I'm busy running around with other men and I leave one of the others to take care of him. He really likes the other two, they're very hard workers and never complain when I leave them. He has wanted to buy them gifts to say "thank you". I agree with Robin, you will NEVER convince them that the others don't exist. But I cannot redirect because it is constant. I just keep telling him that there are just the two of us here. Sometimes he tells me to take off and not come back, the others will take care of him. I love him dearly, BUT there are some days I'd love to take off and see how he explains being alone. It's like a trap that you just have to learn to live in. We do have some days that are OK, seldom are there days that you'd call good. Then we have the days that he is completely lost, doesn't think this is his home, very upset because he doesn't have enough money for a hotel or a way to get there. That's when I step back and try to re-examine my patience and attitude and try to put myself in Frank's place.

Take Care,
Gerry (the wife)


Sun Dec 06, 2009 8:34 pm
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
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Oh Robin, how I would like to avoid the subject, but he brings it up many times a day, wanting to know where my crew is, what shift I am on, what am I being paid. When I ignore him he gets very upset, it works better to tell him they are figments of his imagination. While he doesn't agree with me on that, he accepts the fact that I think they are not real. The last few days he is thinking he is back working again, wanted to know if it was okay for him to miss work tonight so he could watch the Vikings play. He doesn't seem to understand pension, and Social Security, and where the money comes from. Figures I should be paid for caring for him, and since he thinks works also he should be paid too. He is very concerned about these "figments" worries that they might be out in the cold, hungry, no place to sleep. He used to be very sure that the doors were locked if we go somewhere, or at night, now he will leave the door open and the porch light on, waiting for "she" to come back. She is the first one he came up with but there are no others.

The doctor who actually diagnosed him with Lewy Body, was Dr. Zwiebel at Struthers Clinic in Golden Valley in Minnesota. He has a regular neurologist in Duluth, but she is quitting her job the first of the year. We went to the Struthers Parkinson's Center, at the urging of our daughter, and because eventually we/I will end up living with her, and thought it would be a good idea to have a doctor already in place when we get there. He seems very knowledgable. The clinic is 200 miles away, but we decided that an appointment with Dr. Zwiebel once every four to six months would be doable, his neurologist gave us a referral to him, after I requested it, and so that they could get the results of what ever tests or procedures they might do.

We will probably be going down to the Parkinson's Center on Jan 25th, weather and roads permitting.

I saw the name/word capgras, and wonder what it meant. Appreciate your answering a question, I hadn't even asked yet, but would probably have gotten around to.

I need all the help I can get, our kids are 200 miles away, and our neighbors as all retired as we are, and not able to help much, they too have their problems.

Mary


Sun Dec 06, 2009 9:03 pm
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Location: Northern Minnesota
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Gerry, I could have written your reply, we have me, and any where from two to four other wives, when there was three of us, he said that one was causing trouble and he was going to divorce her, one was very laid back and did not cause any problems, and one was perfect. I am afraid I was the one causing trouble. Now there are more wives, and one of them he is sure is trying to get into our checking account, and is claiming the kids are hers. He would like to have a DNA test done, so he can prove to her that the kids are ours, and that "she" had nothing to do with them.

There is also another house, which is just like our house. It is in the next town about 10 miles away. I tell him we don't have a house over there, because the taxes in that town are too high.

I too have been accused of cheating on him, he tells me that when he thinks I am one of our kids.

I can tell you what happens when he is more or less left alone, I will be working in another room, and he is talking to one of his "people", and he gets very upset when they don't answer him. He is usually a very mellow guy, but occasionally he gets really angry, he doesn't want to hear that the other wives don't exist. He knows they do because they know all about our life.

He frequently wants me to invite them for dinner, I keep telling that I didn't invite them in the first place and I am not going to feed them.

So far he has not been mean or agressive, he is very polite, thanks me for everything I do for him. Tell me he loves me, often, I just don't know which "wife" he thinks he is talking too.

I keeping thinking I am working my star in heaven, and he has already earned his just because he has this nasty disease,


Sun Dec 06, 2009 10:26 pm
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Joined: Sat Jan 27, 2007 8:38 pm
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Location: CA
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As far as dealing with "others"issue, rather than debating it, why not just go along with it make up some answers to the questions. For example, if he wants to know their hours and what they get paid, tell him they work four hour shifts and get paid $4.75 an hour. If he asks for a DNA test, tell him you went to the hospital and had it done and the results will be ready in a few days. If he keeps insisting on seeing the results, type something up and give it to him (can he still read?). Sometimes,. not trying to "push the river" is the sanest course you can follow. Go with the flow, and if possible, try to find the humor in it-- it's what saved my sanity. Good luck!

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Renata (and Jerome-in-Heaven)


Mon Dec 07, 2009 2:24 pm
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Boy, can I relate!! We always have a copper wire that needs to go all around the world and I just tell him we're going to do it tomorrow when the help comes. Tomorrow he's on to something else, (or can't talk which happens a lot.) And money? I tell him we have all we need and then I give him a few dollars to hold. Still we went to lunch the other day and he had a couple of cards in his pocket which he gave me to pay the bill!! He does worry about money a lot and I just try to go with the flow, as Renata did. It is definitely the easiest way. Good luck, Mary!
Judy


Mon Dec 07, 2009 8:07 pm
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Posts: 537
Location: MI
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My Mother also has multiples of me- worries about paying them etc.-I don't lie to her and on a good day she knows what she has and what it does. I sometimes will say those are Lewy people. The other day she was all wound up about them- then she looked at me and said- those are Lewy people aren't they? I said yes and she replied damned Lewy and what she was going to do to him when she caught him :-)
We do have a rule if they won't talk to us we are not going to feed them- that usually settles that issue (don't know what I'll do if she gets auditory hallucinations) -money is an obsession of hers too.- I give her some and she hides it- she wants to work (she was an office manager/bookkeeper) so I give her a yellow legal pad and pencil or pen. She'll work on that for a while- then decide she can't read her own writing- again threatens Lewy.
Renata is right you have to keep your sense of humor-
there are a number of discussions under the respite topic area. We've discussed, laughed, cried over many of the topics you'll relate to
We struggle together and prop each other up
Take care
Sharon

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syt


Tue Dec 08, 2009 12:05 pm
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Joined: Sun Aug 30, 2009 4:46 pm
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Location: New Iberia, Louisiana
Post Dealing with same issues
I could have written all of these posts....my husband has all of the same issues....I am his helper and his wife, same name as mine, is someone he talks about. One day, I asked what happened to his wife, Betty. He looked at me and very matter of factly told me the alligators ate her. I lost it. That was the last thing I would have expected but I guess he needed some explanation for what happened to his wife. Fortunately, he tells me nice things about his wife. It feels strange to hear about yourself. I just let him talk.

He thinks we live in "duplicate" houses and wants to know why we bought both of them. One time, when being questioned about why we bought 2 of the same houses, I told him that our son was going to come live with us some day so I bought the other house for him. Now he wants to know if he's keeping the taxes up. He doesn't bring up the houses as much any more.

He also worries about money all the time. He always made our investments and was always involved in our financial affairs. I just reassure him that we have plenty of money. I put lots of 1$ bills in his wallet....which he loses and thinks someone has come into the house and stolen. He thinks people steal a lot of our stuff...

A lot of the ridiculous conversations that we have are really funny and I find it is better to agree with him, give him some reasonable solution to the problem, and find humor in as much of it as possible.

We are going through a good phase right now with a minimum of changes. I hope it lasts for a while. Good luck to all of you who are dealing with the same problems.


Fri Dec 11, 2009 5:56 am
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Location: Acton, MA
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Reading thru the posts I know everyone says try to agree with our spouse or redirect the conversation. When possible I agree or give an answer he accepts. But most of the time that just can't be done. He sees me walking down the street with "my boyfriend", it's him I'm walking with and he is discussed with me because I've left the two kids outside like dogs. They are cold and the 10 year old is all scratched up from hinding under bushes to keep warm. If I try to change the subject he just keeps going back to it, sometimes he goes out to find them but they're so scared they run away. Our days are filled with outrageous stories and I'm usually a bad guy. There are very few smiles these days, but life goes on and so do the stories.

Take Care,
Gerry


Fri Dec 11, 2009 6:16 am
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Joined: Sat Dec 05, 2009 7:24 pm
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Location: Northern Minnesota
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I agree, while it would be great if I could redirect his thoughts, about the other wives,and people of his delusions, it is not possible, they come up so frequently, he worries about them. Trying to redirect the conversation does not always work, and he gets more and more upset. He also has people that are in our bedroom, or any room in the house, and he is sure they are there, and I have to sit in the chair, or do something to show him there is no one there. This goes on every day, there are times when I am sure he knows exactly what is happening, and then he will get the copies of our marrige license and show me that I am not his wife. His wife is gone and where is she. Life is not what it used to be, and never will be again.


Fri Dec 11, 2009 1:33 pm
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In that case, you redirect with a question like "Tell me what you most loved about your wife?" Or, "tell me about a vacation you took with your wife?" "Did you have children? Tell me about them."


Fri Dec 11, 2009 1:58 pm
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Location: Northern Minnesota
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I will try that, don't know if it will help or not, but it is worth a try. If it would keep him from being so anxious about the people of his delusions. It would be a good thing.

Thanks for the suggestion.


Fri Dec 11, 2009 2:28 pm
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