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 New person writing on this site Good evening everyone 
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post New person writing on this site Good evening everyone
Hello,

I'm very new to forums and hope I can learn how to communicate with the care persons for LBD. My husband was diagnosed 6 years ago (we live in France) with LBD and after 3 "honeymoon years" began bad attacks. He was hospitalized and spent 2 years in a medical home, primarily so I could sleep at night. He is now at home, having been stabilized and the neurologist is happy because the disease progresses only slowly. But it is so hard for me because it is turning out that I am constantly on call, and it really burns me up to think that anytime I want to do something by myself, I have to pay someone to look after him. It is impossible to find someone to replace me for more than a few hours. Of course that means that I have to give up most of my former activities outside--sport, cultural events, etc. He now understands that he must not disturb me at night, and that works out pretty well for now because he is sleeping at the other end of the house.

Medication is Modopar through the day and evening, Exelon, and Equanil at night, plus something to increase blood pressure.

I had always wanted to spend our retirement discovering this beautiful country, as his career didn't give us much time off-I am 70 now, and the anger from realizing that I will probably never be able to, seeing that change sets LBDers off on another attack, is always in the background.

I'm glad to read about all the troubles other care persons have and to know that there are others out there with the same problems. It seems to me that the medical profession doesn't know much about this disease or won't tell me. The GP just says, "I can't tell you." The neurologist is kind and efficient for his case, but I think they all forget that it's a "disease for 2," and I nor the family are not included in any kind of advice or help for daily life. They all just give you the prescription and make an appointment for 6 months hence.

I would be glad to hear from anyone with this type of problem. Dinny Wolff


Thu Aug 24, 2006 12:38 pm
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Dear Dinny,

Welcome to the forums, LBD is a very sad and a very much misunderstood disease and you are very correct in saying it is for 2 and in some case entire families, My Husband passed last Oct after yrs of this disease and we still have a teenage son at home who endured this disease as much as I did.
If you could say what you would like to know about LBD perhaps I can put you in the right direction.
Good caregivers are very hard to find and the costly too, so LBD not only robs you of the person but also your funds.
Do you have any family around to help out with the caregiving?
:)


Thu Aug 24, 2006 4:59 pm

Joined: Tue Jun 27, 2006 12:43 am
Posts: 47
Location: Boulder, CO
Post 
Dinny, I know what you are going through. As soon as my husband and I retired he developed symptoms of LBD and Parkinson. Our entire retirement years were destroyed. I am your age as well, and I always
ask what is there in the future now for me. I have 2 grandchildren who
live nearby and 2 more in another state. So I concentrate on them.

The worse part is that there is no future in our situation. It is all downhill.
That's what we look to each day. Here in the US we have many senior
centers and caretaker centers for people in our situation. Do you have anything like that in France??? If you do, they are a wonderful source of help. You must keep yourself busy. I belong to a book club and another organization for seniors. I cherish the time if I go to the store or just window shop. I do go out to lunch occasionally with friends.

Another thing my husband enjoys, is books on tapes or CDS.

It is true the doctors do not know much about this disease and all medication is very experimental. What works for your husband may not
necessarily work for my husband.

Keep writing to this forum which questions and what you are going through. We will all try to give your support and suggestions.

By the way, I have visited your country and espeically enjoyed the
many places we stayed in the country.

Fran Schneider


Fri Aug 25, 2006 12:31 am
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
Thank you, Fran and Irene, for your comforting thoughts. Here in France, there is not much communal help for dementia patients. Little by little, cities do establish day care centers, but they are for persons who are really "bad." My husband doesn't qualify for anything like that because for the moment, he is quite lucid during the day when the Exelon takes effect, can follow conversations and enjoys visits from his colleagues and friends. But in the morning, he is completely out of it. He needs help in dressing,etc. and needs repeated commands like, "Could you open the shutters?" He used to do this just fine and now, maybe one shutter gets opened or else he tells me he can't figure out how to do it. In the afternoon, anxiety takes over and if there is the slightest thing that goes wrong, he gets upset to the max, like stepping on his glasses, and "how are we going to fix that?" If I listened to him all the time, I would be worn out with all his anxiety problems. And I am worn out anyway! I have given up tennis, trips, even going to town for an afternoon by myself. I even have to entertain him, as he has given up reading for lack of concentration.

Well, just to say that there isn't anything in our small town that would help us out and as I said before, getting someone to look after him if I could do something else, is very heavy on out finances. The 2 bad years in the medical home was devastating for that, but necessary. I do have our cleaner come for a few more hours on Thursdays so I can continue my quilting guild. But that's all. "Adultsitters" are few and far between, because people want a regular paying job, and I need someone just once in awhile.

Tomorrow I am going to try a weekend at our little studio apt. in the Alps to see if he can manage it without too much "ado." If the nights are OK, I can think more positively about any future that's left.

As for my family, they are so busy with their very young children and jobs, that we don't see them very much. One daughter lives 10 minutes away in a small village, but she works full time with 2 young children. My other 2 are in Paris and Annecy, with twins or babies! And even when they do come for a weekend, they are so busy parenting, that there is no time for any substituting. They do call once a week, though and of course are very concerned.

This is longer than I had planned, but now my situation is right on the screen. Thank you again for your help, and I hope we can can continue to communicate through this forum. Dinny Wolff


Fri Aug 25, 2006 12:41 pm
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
Thank you, Fran and Irene, for your comforting thoughts. Here in France, there is not much communal help for dementia patients. Little by little, cities do establish day care centers, but they are for persons who are really "bad." My husband doesn't qualify for anything like that because for the moment, he is quite lucid during the day when the Exelon takes effect, can follow conversations and enjoys visits from his colleagues and friends. But in the morning, he is completely out of it. He needs help in dressing,etc. and needs repeated commands like, "Could you open the shutters?" He used to do this just fine and now, maybe one shutter gets opened or else he tells me he can't figure out how to do it. In the afternoon, anxiety takes over and if there is the slightest thing that goes wrong, he gets upset to the max, like stepping on his glasses, and "how are we going to fix that?" If I listened to him all the time, I would be worn out with all his anxiety problems. And I am worn out anyway! I have given up tennis, trips, even going to town for an afternoon by myself. I even have to entertain him, as he has given up reading for lack of concentration.

Well, just to say that there isn't anything in our small town that would help us out and as I said before, getting someone to look after him if I could do something else, is very heavy on out finances. The 2 bad years in the medical home was devastating for that, but necessary. I do have our cleaner come for a few more hours on Thursdays so I can continue my quilting guild. But that's all. "Adultsitters" are few and far between, because people want a regular paying job, and I need someone just once in awhile.

Tomorrow I am going to try a weekend at our little studio apt. in the Alps to see if he can manage it without too much "ado." If the nights are OK, I can think more positively about any future that's left.

As for my family, they are so busy with their very young children and jobs, that we don't see them very much. One daughter lives 10 minutes away in a small village, but she works full time with 2 young children. My other 2 are in Paris and Annecy, with twins or babies! And even when they do come for a weekend, they are so busy parenting, that there is no time for any substituting. They do call once a week, though and of course are very concerned.

This is longer than I had planned, but now my situation is right on the screen. Thank you again for your help, and I hope we can can continue to communicate through this forum. Dinny Wolff


Fri Aug 25, 2006 12:49 pm
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Joined: Tue Sep 26, 2006 3:24 pm
Posts: 14
Location: Florida
Post 
Not sure how this will work out but my plan to cut some expenses on help is to get a list of capable teenagers together, just like I did while my children were little. I plan to have those teens in my home with me beforehand to show them what I expect of them and how to deal with LBD behavior, also I am giving them material to study about the disease. Then when I need to get out for awhile I can call on one of them to come and be with Joe. If they have a problem, I always have a cell phone with me.

haven't needed it yet, but already have 1 girl for sure and a possible 2 to 4 more. Will let you know how it works for me.

_________________
Anita. Caregiver to husband Joe. Diagnosed with Dementia in Feb. 2006 and LBD in November 2006.


Sat Nov 11, 2006 9:58 am
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Hi Anita,
I think this is a great idea , more so getting them involved education wise before needed and if Joe is ok with it and he gets used to it I would think that this could work.
Good luck! :D


Sat Nov 11, 2006 10:41 am
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