Re: HELP/JoAnn

[Guest guest]

Hi JoAnn,

You get my applaud, I've got to hand it to you for sticking in there. I could

not handle the lack of sleep, it was making me cranky and snappy at my poor LBD

husband. As you know, the more you snap, the worse they get and it is a never

ending battle. My only solution while my husband was living at home for my

sanity and for his well-being was to take respite once a year and leave my

husband in a facility for a week and take a much needed vacation. I also checked

into a local hotel every 6 months with my husband, we were very close to home if

we needed to get home, but once I checked in, I could have been anywhere in the

world. It gave me a weekend of sleep. My husband was content, because I was

never out of his sight. I was relaxed, because I didn't need to make a bed or

clean or cook. On occasion, I ordered room service and we would eat in the room.

 I even used the pool and got exercise swimming while my husband sat in a

wheelchair (*transport chair)

 under an umbrella at the umbrella table and I could see him. I could even

read a book at night while he watched TV. It was rare to have time to read a

book.  We were both content and we both slept well at the hotel, he never

attempted to leave the bed and he didn't know how to unlock the hotel room door

to escape. I would get a handicap room and the bathroom was equipped for my

husband. I know with LBD some will not stay in unfamiliar places. I was lucky

that my husband would stay in a hotel without a problem. He loved having me in

sight at all times. At home as soon as I left his side to cook or clean or do

other house chores, he was yellling for me, I couldn't go two feet away from him

without him yelling for me. I couldn't get anything done around the house. My

husband is a resident in a nursing home now and has been there for 4 years.

Mostly, I moved him to a nursing home, because he got very combative with me and

attempted to knock me out with a

vase over my head. That was " The Straw That Broke The Camel's Back. " I was not

going to deal with it anymore. I could have been laying out cold, while he was

free. Fortunately, I saw him coming down on my head with the vase and ducked and

rolled out of the way before he actually did hit me with the vase.

As it is said, " It takes a village to raise a child. " I think it takes " A

village " to care for a LO with LBD. That is how I see the nursing home, as " My

Village " When I am there, I am Jim's caregiver and they help me to watch over

his well-being and when I am not there, they are his caregivers and I get rest.

I am there everyday for at least 8 hours to care for my husband except for major

holidays and family events. There were days at  home, I could not keep my eyes

open to keep a watchful eye on Jim and he could have gotten hurt badly.

Thankfully, he didn't. There were days I just didn't care, I was so tired. Some

days, I couldn't even make a meal, I was so tired.  Jim was basically on his

own then. He did get up one evening when I begged him to please stay in bed,

because I was exhausted, but of course, he got up and I heard a (((THUD))) in

the kitchen. He had fallen and I didn't have the strength to lift him off the

floor. I had to call my daughter

at 1AM to come over and help me get him off the floor. Thankfully, he was ok,

but I can hear you, and know exactly what you are saying. The nursing home has

worked out for us and we enjoy each other's company and I get sleep. I know for

some the nursing home has been a nightmare. Jim is combative with the staff at

the nursing home, but not with me anymore.  If Jim should try to hurt me, I

know I can call for help and people are there to help.  At home, I had no help

in the evenings.  I give the staff a break when I am there and they appreciate

that I am there to take over and give them a break. The one thing is that Jim

can not cause too much damage, because he can not get around anymore, he has the

Parkinsonism and is in a wheelchair full time now, so he can't cause too much

damage. He can not reason how to get around in the chair either. Someone has to

push the chair to get him around, he just sits wherever he is left.

Keep the strength, you know now that you are not alone in caring for

this dreaded disease. My thoughts are with you.

Jan Colello

Husband, Jim, dx w/LBD 2003

P.S. I mentioned a " Transport Chair " used at the hotel. I learned about the

" Transport Chair " in this group. It is a light weight wheelchair, if you have

not heard of the " Transport Chair " It has 4 small wheels, so the person can not

get around and has to depend on someone to push it unless they use the " Cog

Wheel Feet " to move around in it. It is only about $100.00 for a " Transport

Chair " Medicare may pay for it. I could take it in the car, it is so light I

could fold it up and put it in the back seat of the car. My trunk is very small,

so I put the " Transport Chair " in the back seat area of the car. It has a safety

belt and I would belt Jim in and it has wheel locks. Jim could not reason how

to get the safety belt undone. I felt safe with him in the  " Transport Chair "

while I swam at the hotel pool for exercise.

Transport Chair

http://www.walgreens.com/search/results.jsp?Ntt=transport+chair & x=0 & y=0 & ext=gooH\

ome_Medical_Brand_walgreens_transport_chair

________________________________

To: LBDcare <LBDcaregivers >

Sent: Mon, May 17, 2010 10:09:21 AM

Subject: HELPAs

 

We have been dealing with the behaviors of lewy since 97, but doctors kept

finding all kinds of reasons [low oxygen, Alzheimer's, too much medication,

etc.] that would eventually be fixed. I kept waiting for my Fred to be OK.

Finally he was diagnosed with lewy bodies about a year ago. Since then he

has had 3 major strokes, has a dead spot in his brain, and has seizures. He

does not have Parkinson's, though has the behaviors sometimes. The docs here

in our small town tell me to go on the computer for info. So I have learned

to do facebook and email, kind of. We finally saw a neurologist 2 weeks ago.

We go again Thurs. I asked for a sleeping pill because right now we are

sleeping 15 min. and then up hallucinating for an hour or two. We are doing

really well if we get 3 hours a night. He prescribed Zyprexa which does

nothing. So many pills make him worse. At least this one did nothing. We are

so much better since the diagnoses and the computer because I quit fighting

with him all the time. I thought he was making stuff up just to annoy me or

get attention. We were hating each other and the doctors were blaming us.

After almost 30 years the lewy bodies had almost done us in. Now I have him

back. I just had to get that he really was no longer the man who could fix

everything, but he's still my Fred. On his good times we still laugh

together. I desperately need advice on behaviors though. Anyone who is

willing to help, please contact me. If anyone just needs an extra place to

vent, I'm thrilled with that, too. I was alone with this horrible thing for

years. We have had every symptom and behavior I have ever heard of with lbd

and no clue anybody else was having them too. Just to know others are there

helps my sanity. Thank you everyone for caring enough to share.