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 first time posting [- husband wityh LBD 
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Joined: Wed Jan 13, 2010 12:25 am
Posts: 7
Post first time posting [- husband wityh LBD
My husband is a 62 year old man who was diagnosed in 2006 with Lewy Body Dimentia. His progression has been extremely rapid. At this time, I have someone living with me to help take care of him, but he really only wants me. I work full time and was paying 3 different people to come to my home during the day. Three days a week I leave my home at 7 AM and return at 9 PM. I was always worried that one of the people would not show up or someone would be sick. He can not be left alone. At first, he was too frightened to be alone and now he really cannot be left alone. He attends day care 4 days a week from 8 until 3. When he is home, expecially in the evening, he is constantly pacing, re-arranging furniture, taking things out of the drawers. He seems to be so restless all of the time. I am dealing with many different forms of behavior - agitation, restlessness, frustration, jealousy.
I try very hard to keep my patience but sometimes it is really difficult. He does not sleep through the night so I cannot remember the last time I slept through the night. Some nights, he may not wake up but I do. I feel like I sleep with 1 eye open most of the time.
I read the comments on the forum sometimes and I often want to post a question or provide some help to another caregiver if I can and that is my reason for joining.


Sun Jan 24, 2010 7:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
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Hi - I'm so sorry about your husband, and all the burdens you have as a spouse and care giver. I joined this last week and have met some wonderful people, gotten some great information. I hope you continue to stay in contact with people here and find it as helpful as I have.
If you haven't been on the Chat Room you might want to try that too. I usually leave it on all day in case someone gets on and wants to talk.
All the best to you.
Lynn, daughter of 88 yr. old dad with LBD


Sun Jan 24, 2010 7:51 pm
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Joined: Wed Jan 13, 2010 12:25 am
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Thank you for your response. I am sorry about your Dadl. I will stay with the forum and I will try the Forum. We are having a quiet kind of day today, after a restless night last night. He woke me up last night to tell me there were 2 fires burning. I thought he was dreaming. Luckily I went with him to the kitchen and found he had turned the burners on. He has been quiet for the rest of the day. Every day there is something new.


Sun Jan 24, 2010 8:07 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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pbronish,
Sorry you've had to join us here but welcome.
Robin


Sun Jan 24, 2010 8:46 pm
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Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post reply to pbronish?
My husband is 59 - diagnosed 6 yrs ago with PD 2 yrs ago with LBD...isn't as bad as your husband and I am already at my wits end more than I should be! I know he can't help doing what he does but sometimes the sounds of tiny, shuffling steps or scraping chairs while trying to sit down or the flapping of a newspaper up and down - over and over and over to try to fold a page (I don"t think he understands it anyway)... and calling my name and not being able to complete words or thoughts, and his inability to dress most days and the ability to dress when the caregiver is here.... it all feels like I am breaking into pieces inside my own head.... it assaults all my senses and seems to call up some primal "fight or flight" instinct. But I don't know who to fight and I am not going anywhere... so, instead, I try not to speak too loudly and try to be patient because I know full well it simply isn't fixable and he certainly doesn't want to be this way. But sometimes, just sometimes, rational knowledge and the power of prayer isn't enough.... and I humbly admire the seemingly perfectly wonderful people in this world that are unflappable in the face of any adversity. Cheryl


Wed Jan 27, 2010 12:13 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Cheryl, You said it so well. Frank does all that, and also has a belt with metal on the tip and metal loops, he unbuckles it and all you here is cling, cling, at times I'd like to throw it in the trash. But like all the caregivers, we know this is not where they want to be. Frank was going to a Senior program twice a week, he went 6 times and what a relief I felt each time I got back in the car alone. I took him there yesterday and refused to get out of the car, after 10 mins. of trying to convience him, I gave up. I'll try again Thursday but I don't think he'll go.

I am faced with resistance all day long so by the end of the day, it's hard to be nice and I the only relief is when we go to bed and if he decides to STAY in bed.

Take Care


Wed Jan 27, 2010 8:27 am
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Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post Gerry
That metal belt thing drives me nuts, too!!!! He comes in the room saying the belt won't work and he follows me around wanting me to "fix it"...... about your husband and going to the senior center.... when you arrive... just slow down... open the door and shove at just the right moment :twisted:
I HOPE EVERYONE READING THIS REALIZES I AM NOT SERIOUS.... WELL, NOT TOOOOOOOOO SERIOUS.... HAVE A HUMOROUS DAY GIRLS!!!!!! Cheryl


Wed Jan 27, 2010 10:49 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Chery and Gerry - I honestly don't know how you and all the others who are direct caregivers every day do this. I see my dad for about a week, once a month more or less, and within 5 min. I usually get so frustrated and upset I have to leave his room at the ALF where he lives. Patience was definitely not something I've ever had much of, unfortunately, and the same goes for my dad. I get so sad thinking about his condition, so frustrated at the insurance co. and other "paperwork" things I now have to deal with, I get myself into a very aggitated state, which has been really bad for my own health. And when I see him, about the only communications we have is him bossing me around, demanding things, and getting mad at me when he can't get the right words out and I am trying my best to guess what his non-sensical sounding utterances mean. It takes an awful lot of energy to deal with this terrible disease.
Where do you get your strength and patience? I really give all of you who deal with this on a daily basis a tremendous amount of credit. It is a really tough job. I look back at some of the times I was having a tough time raising my 2 sons, and that was NOTHING compared to dealing with this. At least with kids, you know they will eventually grow up, become more responsible, think more about others instead of themselves, and you see progress. With this, it is all downhill with no hope, and knowing that it will just get worse as time goes on. The counselor I see says that people with dementia usually get calmer and more contented, the more they lose their cognitive abilities. I sure hope that happens with my dad, but he just seems to get unhappier and more demanding every day.
Sorry to end on such a depressing note. My thoughts are with all of you caregivers out there, and I hope you have some peace today. Lynn


Wed Jan 27, 2010 11:41 am
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Joined: Wed Jan 13, 2010 12:25 am
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I knew I wasn't alone in this. It's good to have people who understand. I went through the belt thing too. I finally went out and bought him pants with an elastic waist after about 3 new belts and a pair of suspenders. I really find thay sweat pants are much better for everything (toilet and BAD belts). My husband goes to Daycare 4 days a week. He did not like it at first. At the initial visit, he said he would go in about 20 years from now. 2 months later I made the decision that he would have to go. We started with 2 days and are now up to 4. He was very reluctant at first but now he thinks he is going to work. He comes home and tells me how tired he is from all the lifting. It really is something for him to do and it fills up a good part of the day. Don't give up. Do you have a bus that will pick him up? Can anyone tell me if their LO has accused them of having an affair?


Wed Jan 27, 2010 2:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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pbronish -
Good for you for insisting your husband go to day care. Many spouse caregivers have been accused of infidelity. It's often one reason why LOs have to be placed in facilities (for the spouse's protection). You might read over some of the posts in the Symptoms or Behaviors section of the Forum.
Robin


Wed Jan 27, 2010 3:08 pm
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Joined: Wed Jan 13, 2010 12:25 am
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Thanks Robin for the reply. It drives me nuts when he does this. Who has time for another man! The sad thing is that he thinks it is one of his good friends, the man who stayed with him while I was workikng until I found someone to come and live with us. I have a nice young woman who helps ease the burden but when I am home, he only wants me. I don't know how much longer he will be able to stay at home. When do you know it is time for the nursing home?


Wed Jan 27, 2010 3:21 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Quote:
When do you know it is time for the nursing home?


When you simply can't do it anymore!


Wed Jan 27, 2010 3:57 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 769
Location: LA
Post My protector
Once again, I count my blessings [and smile] as I remember my experience with my possible infidelity. My Mr Bobby was sitting in his Lazy Boy rocker/recliner absorbing the TV sound. {completing the picture for you new comers. Mr B. was totally blind} I was sitting at my computer in the same room, half listening for him when I heard him begin making a pistol sound and clicking his "finger gun" again and again. He became very agitated and continued shooting. Then I pieced the the scenerio together by listening to his talk. It seems the strange men [eleven or twelve of them] had invaded our living room and Mr B. was shooting at them. As they all left he told them, "I saw you make a pass at my wife and if you ever try that again, you will end up at the graveyard" "Pow, Pow, pow-pow" and on and on. Chivalry is not dead!

An addend: A few minutes later while Mr B.was still sitting with his finger in shooting position, someone knocked on the back door. It was our pastor from church. I told him this was not really a very good time for his visit. He understood. I did not want him to end up in the cemetery.[smile]

BTW my PCP told me that when/if Mr B. became a threat to harm me or himself, the decision would no longer be mine. I am thinking he meant that to be physical as well as mental abuse. Do you agree?

Dorthea

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Wed Jan 27, 2010 4:00 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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I think you're getting some good guidance here from people who have been there/done that. Mental or physical abuse, and "when you just can't take it anymore". If you are getting so exhausted physically and mentally that you just feel YOU can't go on anymore, it is not doing anyone any good getting you worn out. I have heard many times about caregivers who end up getting really sick or dying before their LO, because they are all worn out. It's not fair to you to be in that position OR your LO. Who will take care of him if something happens to you? I think that is a question we need to ask ourselves.
The paranoia thing seems to be a theme throughout many of these postings, too. When I send forms to my sister that my dad has to sign, he accuses her of stealing his money. Last time he signed some insurance form (about the 100th thing we've had to get him to sign) and he told her "I hope you have enough money now to buy yourself a new car." She was really hurt. Maybe not as bad as being accused of having an affair by your husband, but still it was hurtful for her to hear. He is NEVER nice to her anymore. At least with me he isn't always on my case, just most of the time!
I hope everyone's posts give you some help you need. Take care, Lynn


Wed Jan 27, 2010 4:26 pm
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Joined: Sun Aug 26, 2007 9:44 pm
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Location: Nashville, Tn
Post infidelity
I am soooooooooo glad someone else has the same suspicions by the spouse. I have to almost laugh when my spouse gets suspicious because I think - you have to be kidding, when in the hell would I have time in the first place - and in the second place, I am not exactly a ball of laughs these days and I would probably end up cutting the guys food and wiping his chin at dinner......


Wed Jan 27, 2010 5:47 pm
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