Re: Need Suggestions

February 15, 2011

Hi dear ,

It isn't awful that you need a break. I, too, have been in your shoes. It

seemed to nearly drive me crazy to try to think up ways to keep my Don in a

nursing home.

He would even grab my purse and wouldn't let me leave without it. He

managed to get out the door and sat on the hood of the car. My heart nearly

broke. I have never hurt so bad in all my life. I was told he would get over

it, but he didn't, and he got creative in finding a way to get out. He knew

he was sick, but I was his life line, and he wanted me.

In order to get out, He went on a terrible rampage, the next time he hit a

man with a wheelchair foot rest, he swung a walking cane over a woman's

head in her room with her screaming bloody murder, he walked outside in short

sleeve summer lightweight clothes, when it was 30 degrees and windy, he

was found in a construction site next door where he had fallen. My heart

screamed for him. I felt terrible, but I needed relief very badly. I always

brought him home after every episode. The 5th and last nursing home I place him

in he told me if I sent him there he would die, and he did ten days later.

Even telling it is killing me, because it hurts so badly.

We had a oneness and love that many envied. We were blessed in finding

each other that mirrored our every need, and desire of the heart. I feel like

part of me has been literally torn away during the whole long illness, and

death.

I feel for all of you going through this terrible journey with LBD. There

was no way I could get it out of Don's mind that he needed to stay in a NH.

I could tell him I wasn't able, and he would say he would help me. Oh

brother!

Gotta close here,

Love a lot,

Imogene

In a message dated 2/15/2011 9:31:10 A.M. Central Standard Time,

hibbittsjenn@... writes:

I guess I'm just tired and my nerves are on edge, but I need suggestions.

Now when I visit my sister, which is almost every day during lunch and

after work, she is constantly telling/demanding that we leave and go to her

house. I try to take her to her room and she refuses to go in. I know that

she is wanting to go home, but that's not possible now. The nurses at the

assisted living facility says she does fine, then when her son or I come in

she starts getting agitated about wanting to leave. I guess she thinks

we are her way home. She gets very verbally abusive. I've tried

everything, but last night I was in tears, and my chest was beginning to

tighten,

which could not be a good thing. I explained to her, in a calm manner, that

I was trying to do my best at helping her in any way that I could, but I

was going to have to go home if she continued to talk to me that way. She

seemed is calm down a little, but I could tell she was upset with me when the

sitter came and

I went home. Is it awful that I think I need a break?

February 15, 2011

Hi dear Sherry,

I am glad that week off helped. It never helped Don. I took as much as two

weeks off and he was worse than ever.

All any of us can do is throw our experiences out there, and hope some of

it helps

someone else. I am sure this experience you had with your Mom has helped

somewhere.

Nothing helped my Don. He was a case all unto himself. I felt as if I was

nearly a basket case at times, and even had his Doctor test me. The doctor

said I was near perfect. Well, that reinforced Don's will to be with me. He

just couldn't get it through his head that my body hurt so bad from caring

for him, that I was on the verge of being hospitalized.

I hope everyone can use what help is given. Some things work and other

things don't. But, we all learn that sooner or later.

Love a lot,

Imogene

In a message dated 2/15/2011 11:14:17 A.M. Central Standard Time,

upnorth@... writes:

We went through this with my mom when she was first in the nursing home,

nearly 2 years ago. The best advice I got was from their social worker,

who told me that it is ok to take time off. I was in tears after every

visit, and was just enabling her to treat me badly, putting myself in

the line of fire so to speak, and I didn't HAVE to do that. She was

definitely capable of learning that wasn't OK. And sure enough, I took a

week off and when I went back in her attitude was completely different.

And perhaps more importantly, by allowing her to continue to fight being

there, I wasn't allowing her to adjust - which is essential for her

future well-being of course. During that week she came to terms with it

as she wasn't continually fighting it (by fighting me). It was a huge

turning point and she was so much more content afterward.

By working with the social worker, they used that week to really work

with her on forming relationships and getting involved, and it really

made all the difference for her, and ended her constant frustration and

rage (although it occasionally pops up even now, always after some sort

of event she didn't like, such as a new roommate, or something similar).

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

February 15, 2011