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 symptoms and behaviors 
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Joined: Wed Aug 01, 2007 4:29 pm
Posts: 14
Location: victoria, bc. canada
Post symptoms and behaviors
I am the bewildered wife of a lewy body patient. Bill has had these symptoms and deteriorations over the last 6yrs. we finally have the agreement of two psychiatrists who specialize in LBD, he is now on memantine to try to help with short term memory.

Over the past few years i have read randy graves posts, and he did at one point respond with a beautiful post that i have printed up and read when i am at my wits end. How does someone like randy sound so well put together for a lewy buddy; and my husband comes across like a lunatic most of the time. sorry for being so blunt; im just confused and then some.

i read here on the posts about how different each individual is with the disease. I am already thinking bill does not have this; it must be that...etc.
emotionally i cant afford anymore running around looking for answers.
we have made two geographical moves in 6yr. me wanting to help him.
im exhausted.
we have good doctors now and a health authority team. but no one for me to talk with.

some times i want to run and hide; but at age 70, where would i go...
who would look after my loved one....
i will....

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bless you,


Thu Sep 09, 2010 9:14 pm
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Joined: Fri Aug 06, 2010 10:07 pm
Posts: 19
Location: Dallas, TX
Post Re: symptoms and behaviors
Hello, dear Icare. We care, too! I am sorry you are having a struggle and I think it's great you're blunt. Coming off like a lunatic, as you say...my poor Dad just started coming off like a lunatic in the past three months. Of all the losses we witness for our loved ones, this has been especially hard. Hard to know how to respond, feel, explain to others... I am fortunate that Dad spends time with some experienced caregivers and program directors who know how to help him get the most out of his days. I don't have any answers for you, but I'm thinking of you and hoping you can wrangle a good night's sleep tonight and then the next day think of one thing one person can do to help a bit on a regular basis. Help helps.


Thu Sep 09, 2010 11:55 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: symptoms and behaviors
Dear icare,

You are so eloquent. But it is easy to see your exhaustion. How long has it been since you had some respite time?

"some times i want to run and hide; but at age 70, where would i go..."
down by the sea with a good book and a blanket for warmth.

"who would look after my loved one...."
Do you have a son or daughter who could help? A grandchild or a sibling? Or maybe there's an ALF that Bill could stay at for a week or so.

I love the way that everyone here watches out for each other and strongly encourages each other to take care of themselves. You'll be no help to Bill if you get sick from the exhaustion.

Take care of yourself.

Thinking of you...Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 09, 2010 11:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3306
Location: Vermont
Post Re: symptoms and behaviors
This forum is a lot of support, so visit here often. If you find someone on here you'd like to have a private chat with, send them a PM. Some of us have shared emails, phone nos., etc. via PM and we "get together" often to give each other support. The LBD chat can also be helpful if you are lucky enough to catch another person or two on there.
Yes, take care of yourself like others have said. Is there a local support group you can go to, and can you send your LO to adult daycare? Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Sep 10, 2010 10:07 am
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Joined: Wed Aug 01, 2007 4:29 pm
Posts: 14
Location: victoria, bc. canada
Post Re: symptoms and behaviors
thank-you for the responses to my post.

last nite i had a good cry and slept like a baby after that.

i have never had respite care for bill. but it will be starting very soon.

we have a person come in twice a week to bathe him; and i can have mondays time slot up to two hours. which is perfect for me to go accross to the mini mall and shop or eat out; whatever.

im in the process of finding a day care program for him to attend one or two day weekly as well.
if i can keep focus' its easier to handle the bumps.. sometimes i just loose it..lol..
thanks everyone for being here and making LBD forums a success.
Pat.

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bless you,


Fri Sep 10, 2010 2:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3306
Location: Vermont
Post Re: symptoms and behaviors
Pat - I'm so glad you are getting more respite care. You really need to get away mentally and physically to keep yourself healthy and of course there are always those household errands that need to be done.
Glad you got a good night's sleep - not getting enough sleep will really wear you down fast, and you don't need to be sick. Hang in there. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Sep 10, 2010 4:15 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: symptoms and behaviors
You must take care of yourself so that you can take care of your loved one. Never feel guilty for taking some time for yourself.

_________________
Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Fri Sep 10, 2010 8:17 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: symptoms and behaviors
I'm glad you're working on daycare. For Bill, as well as yourself. We can sometimes get caught up in wanting to care for our LO at all times, as one of the last ways we can express our love. The thing is that 24/7 of the same environment and the same person isn't good for anyone - not you and not Bill.

Daycare provides a lot of stimulation, but the wonderful people who work there are also sensitive to the needs of the people that come to them. My Mom enjoys the memory games (though she has a lot of trouble speaking) and the musical groups that come to entertain. They even have a couple of therapy dogs that are well loved by the entire group. Mom calls daycare "school" or "work." I felt so guilty when I started dropping her off there (every weekday so that I can work) but she really enjoys it. You might stop seeing it as an opportunity for a couple of hours of your own and see that it is something like a senior playground with structured activities. Bill might enjoy the time even more than you do.

Best wishes!

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Sat Sep 11, 2010 12:02 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post symptoms and behaviors - eating less - delusion
In the past couple of days, Dale has been eating about half what he usually eats of his meals and finally, just now, he told me the reason. He said he feels like he has a pencil and writing tablet in his stomach... or a child's toy. When he eats a little bit, he feels full.

Does that delusion sound familiar to any of you old-timers? He isn't obviously sick. He's just pushing away from the table.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Nov 03, 2010 12:13 pm
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