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 Clingy husband 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Sandilee, the 'malfunctioning' items are a familiar theme here, too. None of his electric shavers [three] are 'working properly', the bed, chairs, plumbing, you name it, are all on the blink. His toilet is 'a stupid design'. I guess he can't face the fact that the problems lie with HIM, not the object at hand.

I haven't left my husband alone for two years now. Yes, sometimes his memory is amazingly acute but, then, incredibly poor. He thinks I'm someone else most of the time, too [Capgras delusion] and gets lost in our small house. :(

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Jun 11, 2010 9:32 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
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The dementia symptoms do become more debilitating. Be glad for the things he can do now - it can change literally overnight, for the worse, like it did with my dad. Overnight he:
could no longer walk
sit up in bed
shift himself, roll over in bed
stand by himself
feed himself
started hallucinating
became totally incontinent
had confused, delusional thinking
could barely talk
speech became very garbled
lost his short term memory
etc., etc., etc.
I don't mean to scare you but the reality is things will probably get worse, and there seem to be precipitous declines. :( I just tell my dad that I am working with his doctors to see if there is something that can be done to help his symptoms, and that makes him feel a little more hopeful when he asks me what has happened to him and why he can't do anything for himself.


Fri Jun 11, 2010 10:11 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Frank doesn't need to be next to me but does like me in the house. I occcassionally work 1/2 a day, it's a family business and is just 2 driveways over so he can get me or call me. I have the house, wall phone set so all he has to do is lift the receiver and push the white button. Sometimes that's to involved to complete. With him nothing works properly but he thinks he can fix it so I'll have my brother come and check the plumbing or heat and reasure him that it fine, that lasts for a few weeks. He use to be such a prankster that I could have hung him out to dry, what I'd give to have just one little prank today.
Pat, there are 3 of me, he is always amazed at how hard the "others" work and has asked to buy them a gift to say thank you. Life is a challenge but is never boring.


Fri Jun 11, 2010 10:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
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Gerry - sounds like a great time to buy yourself those thank you gifts!


Sat Jun 12, 2010 9:53 am
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
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Sometimes I think it would be nice if there really were three of me!! :) Fotunately we have not experienced capgras...yet :(


Sat Jun 12, 2010 12:46 pm
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Joined: Tue Dec 01, 2009 5:04 am
Posts: 14
Location: New Zealand
Post Clingy Husband
Sandilee..........
Your posts are just a carbon copy of my situation miles away in NZ!
I cannot be out in the garden for more than 10 minutes or downstairs in the kitchen and when I try and do some work on the computer he is sitting beside me. I think it is the little things that become most irritating - not having enough "space" to be able to read a book without interuption or play the piano alone. We also are past masters at covering up and you feel slightly stupid when friends or relations tell you how GOOD he is - they haven't seen him an hour earlier or been woken at 2a.m. night after night because we have "visitors" in the bedroom, even though he insists on locking the door! They certainly behave like 3 yr olds and can turn on the sulks or a paddy if things don't go the right way. I solely care for my hubby who is 74 and used to being in total control - he was diagnosed about 5 years ago and while he is still reasonably mobile, cannot cope with phones, teles, computers, hearing aids, electric shavers - they are all malfunctioning pieces of equipment!!! I am looking to get some day care but we are SO choosey and will not even drive with some totally responsible friends..........
It is so helpful to read posts from Mockturtle and Gerry and others and realise we are not alone. I too rely on the Bible for inspiration and to keep up my faith, but it is a long and lonely journey.
Keep smiling Sandilee...
Barb


Mon Jun 14, 2010 5:33 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Togetherness
My children [?] [sixty yrs. old] would come to give me a hand with their dad and when they came, I would sit in kitchen with a cup of coffee or go out to the swing, anywhere to do nothing. Mr Bobby would always ask them, "Where's Mommie?". They would go along with it, even though they were amused inside, answering, "Oh, Mommie's busy doing so and so". Yes, it seemed the closeness was so important to his well being.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Mon Jun 14, 2010 3:08 pm
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Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
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SandiLee,
Earlier today I posted this information under --- Treatment --(I think)

It may be very helpful to you. It is an audio service. And if you read this book I recommend you may want to get a wonderful lap dog to lay down with your husband. (I know in some cases this is not practical)

-------------

I applied for and got a service for my dad with Wolfner Library for the Disabled. They now have book players that will play the entire book
on one "cassette". It is so much better than the prior audio books that
took 10 tape changes and flipping switches which my dad could not do.

Now you put in one "cassette" and it plays he entire book. When I visit him I can now start a book and leave it play. He will be able to just hit start again to stop the book and hit start to start it again.

The player is
more compact and much easier to use. It also plays for 30 hours after one charge! It is wonderful. I can even download books that my dad will like - westerns - onto special cassettes they are going to provide to me.

Dad is a veteran and blind so he qualitifed easily but anyone in Mo with a disability that will not allow them to read can apply and the service is free. You do not have to have a computer or anything.

ANYWAY - this book called Izzy & Lenore: Two Dogs, and Unexpected Journery, and Me by Jon Katz 2008 . Is a great book for caregivers and for their LO.

It does have talk about the this AMAZING dog visiting his hospice patients and talks about alzheimers, dying, etc... Even if you think your LO would not like to listen to the book - I still think it is excellent for caregivers.
The man in the book (the author, true story) also suffers from depression and he talks about that along with many stories of the caregivers he visits.

Even if you cannot get it in audio form if you like to read, it is a great book especially if you love dogs or if your LO loves dogs.

Does anyone have any other recommendations on books that would help caregivers. Or that they think are great listens for LOs that cannot read?

Sometimes my dad cannot stand to listen and doesn't want a TV or anything playing but often he does like to listen to the older western books. They are usually pretty short and do not have a lot of sex, cursing, etc...

Thank you


Mon Jun 14, 2010 3:36 pm
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
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Barb...Wow.... our stories really are similar! I hate that I find comfort in knowing others are suffering along with me, but I think it's more the knowing that it is somewhat "normal" in the Lewy world. There are just so few people that have even heard of this , and I am a medical professional.
The surgeon that I assist did give me a new perspective that I found helpful. It's so simple I'm embarrased to say I had not seen it this way. He said..."We as human beings only have our senses to depend on and guide us. A Lewy Body patient is fighting against senses that are deceiving them and they can't trust their own senses. So in their own way they reach to those they feel most comfortable with to be their constant and compass in life." Very very simple but helped me to be a little more empathetic and a little less annoyed.
GraceGirl- Great suggestion!! Our daughter has been reading to him lately and that has been wonderful for both of them! However, I will definitely look into the Wolfner Library...new info for me...Thank you :)
And again thanks to everyone for your stories and advice...It truly has been a comfort...


Mon Jun 14, 2010 10:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
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I wish that all my dad's CGs could understand this. The ones who do, he gets along with very well. The ones who don't, he gets very frustrated and angry with, and then they get angry with him.
What's hard for me is when he is thinking and speaking clearly and rationally, and then goes into a temper tantrum over some miniscule thing. I have to try to adjust too quickly from him acting like an adult to him acting like a spoiled, cranky 4 year old throwing a temper tantrum, sometimes within seconds. I have to stop myself from thinking "I've already raised little kids throwing temper tantrums. It's not fair, why do I have to go through this with my father?" When it gets too hard I walk out of his room for a few minutes. When I go back he usually has no idea what just happened, so we go on as "normal", whatever form that takes these days. :? Lynn


Tue Jun 15, 2010 10:18 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Lynn, that's what usually works best with my husband, too, when he's having a tantrum. I just avoid him for a while and he cools off eventually. Yesterday, he even apologized for his behavior :D

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Jun 15, 2010 10:44 am
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
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yes I agree that is one of the most challenging aspects... the sudden change in mental status. The other day we went from kidding around and joking as a family to within minutes him not understanding the concept of me washing the dishes in the dishwasher... When he asked what I was doing as I loaded the dishes my answer was "washing the dishes" He was convinced that I was overworking because why would I wash the dishes (by hand I believe he thought) In a dishwasher... Wow that took a lot of patience to explain and dance around.
My husband doesn't have temper tantrums (and I always say YET), I am just constantly explaining the simplest of concepts...


Tue Jun 15, 2010 1:09 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
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Sandilee
I like the words you used of constant compass. That is exactly how it feels with my husband. He has always been afraid of doing things wrong. If I take my glasses off, he takes his off. When I put mine on, he puts his on. The same goes for shoes, jewerly etc. I try to spend a good part of the day reassuring him that he is doing things exactly right. I don't want to do anything to undermine his self confidence.
Mary


Wed Jun 16, 2010 8:19 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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I agree with what all of you have said...boy what a trying disease! Irene really hit it on the head. All of the things you thought were important...really aren't as important as we think they are. I too hired someone to clean once a week. Anything else just had to wait as caregiving became 24/7. I'm doing some of those chores I put on the side now: clean closets, drawers, etc. Now taking time to exercise and do all of those things that waited.
Its wonderful that many of you have worked time into your schedules for yourself. Wish I had done more of that...but now..I have all the time in the world. Keep up the good job!

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Dianne C.


Wed Jun 16, 2010 12:39 pm
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