Florence Munat

[Guest guest]

I read the email you sent to Trev. Boy did I need that today. You were right

on with everything. My husband has LBD and one is good, 2-4 days very bad. I

have finally gotten over the guilt, I hope, and realize that I need to start

taking care of me too. My daughter talked me into going to CA next month with

her for 5 days, I finally agreed to go and you have no idea how that light at

the end of tunnel looks to me right now. I feel like I have been given new life.

We have LTC ins. and it provides 21 days of respite care and I am going to start

taking advantage of it. It will pay for 90% of his stay and I guess that's

better than nothing. Anyway wanted to thank you so much.

Re: New to your group

Dear Trev,

Welcome to the group. I am new too, and have already

learned lots from others.

I could relate to descriptions of your nursing home

visits with your mother. Although I wasn't working

fulltime like you. My husband has been residing in a

nursing home for almost two years now. He has had a

stroke, a heart attack, has diabetes, LBD, or as he

said the other day, " You name it, I've got it. " There

are a lot of people in nursing homes and they're not

there because people don't love them. They're there

because caregivers have limits. Everyone has to

determine what their own limits are. When my husband

was living at home, I didn't think it was not a safe

environment for him due to his hallucinations,

wandering, falls, insomnia, etc. It was just me and

him and I became wiped out.

Like your experience, it was the worst day of my life

when I had him admitted to a nursing facility. I felt

so guilty, I would spend the entire day with him. I'd

go around 8:00 a.m. and stay until 8:00 p.m. Finally,

after some particularly aggressive behavior involving

his hallucinations, we had a patient care conference

at the facility. The director of nursing listened to

him and suggested ways to make his transition to

living there smoother. Then she said to him, " Your

wife's going to take a little time off now. " I

realized that what I was doing wasn't good for either

of us. We had to move off on different paths and

establish different lives. It wasn't what we wanted,

but it was what was.

Since then, he's accepted his situation. The facility

is small, everyone knows and loves him. I spend every

afternoon with him (he sleeps all morning), and often

take him out.

The point is, we need to take care of ourselves as

well as our LOs. We aren't any good to them if we are

feeling exhausted, frustrated, or even resentful.

I've heard people say that caregiving is like the

announcement you hear on every airplane before

takeoff: " Put your own oxygen mask on before helping

others. " All caregivers need respite time off. You

feel much more energized when you return.

It must be frustrating if you can't rely on staff at

your mother's facility to feed her. Can that be

changed? That sounds like a battle you might want to

pick with them.

So take care of yourself, and you'll be better able to

take care of her.

Florrie

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