At the crossroads with Don

[Guest guest]

Hello all,

I am at the crossroads with Don. He is becoming too much for me to handle.

He is very unstable and is falling more now.

My doctor told me under no uncertain terms to get some help. Well not

quite that firm, but this is the second time she told me. She said my health is

failing, and to do something fast.

I told my daughter and she came over Friday night. She dragged out a

mattress and slept on the living room floor. She didn't want to haul the heavy

bed again.

She is 57 years old. She was up at seven when she heard Don. She took care

of him with very little trouble. All went so smoothly I wanted to scream!

Why the showtime now? I want the kids to see for themselves how rough it is.

She said she would come by 7 AM Sunday but had to leave by 9:30 for her

Bible meeting. You are right. Don and I both slept until after ten.

I put his shoes on him to go to the bathroom, but couldn't get him up. He

was leaning to the left very pronounced, and fell back on the bed three

times, with me trying to keep him from falling on the floor. I put the potty

chair right by his bed, but from experience I knew to put the back against

the wall, as he has nearly turned the wheelchair over two times from landing

hard. I finally got him almost situated, and he fell on the chair hitting

the wall. He wouldn't release his bladder. UGH!

I took his shoes off to get the soaked diaper off, and put his pants on.

Well I forgot to replace the diaper, with all that was happening with us,

and I put his pants on as well as his shoes. I started to get him up again

and half way up I realized he had no underwear on. Back off with the shoes,

and pants, then on with a diaper, then back on with the pants and shoes.

Why not regular diapers rather than pull ups? They have caused more leaks

than the pull ups, and he has been able to get the panty type down by

himself when he really needs to go when I am busy.

So, we are at the crossroads. Where to go from here? Not well enough to

cope and

he is not sick enough to keep down. He got up behind my back after lunch,

and fell back into his chair, dragging the table back with him. Later he

got up and walked around and nearly fell, while still holding a very

pronounced Lewylean. I told him he was going to break a hip and would be in the

hospital a long time.

I talked to my daughter and she was very sorry she wasn't here to help us.

Well, it went so well when she was here why stay? She left a note and

hoped we got plenty of rest. Good old showtime! Grrrrrr

Now remember that I have an exceptionally bad back. Trying to do the shoes

and pants are the hardest part, other than lifting. So I told Don, we have

to do something. I suggested a nursing home for both of us, and yet told

him that they may not take both of us, but he would have to go. He knows.

After all the falling this morning he agreed with me, but not happily.

I talked to my son on the phone but he is out of town, and won't be back

until around six.

The most I believe I can do is talk to the Hospice nurse and tell her the

situation and see if she can help. I don't know if another NH will take

him. I can't afford around the clock care. My kids are not available to do it.

What to do?

I've unloaded, because I am at the crossroads with nowhere to turn.

Love you all,

Imogene

Love with a smile,

Imogene

Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

in '05, but correctly diagnosed with LBD in March '06.

A happy personality is contagious. Infect someone today

Yours Truly

[Guest guest]

Imogene,

I'm so sorry for what you and Don are going through now. If only I lived close

to you I could come over and help.

It seems like the hardest part of LBD (IMHO) is the phase Don is in now, still

being (mostly) ambulatory, but hallucinating and weak and falling. My mom slid

quickly through that phase of LBD in only two years, but with her hallucinations

and Lewy Lean and falling and incontinence and nighttime wandering, I was

exhausted. She's been bedbound and only moving her arms, now for 26 months and,

her care, in many ways, is not easy, but physically, it is far easier to care

for her in this condition than it was when she was walking and falling.

Gosh, I'm just so desperate to try to find shortcuts to make your life easier.

Any chance he'd just sit on the side of the bed and use a urinal so you wouldn't

have to transfer him to the commode?

I understand about the pull-ups causing less leakage than the regular diapers.

To speed up removal of pull-ups have you just tried tearing them down the side

seams to get them off? Yes, I know you still have to take off pants & shoes to

get the new/clean one on, but at least it speeds the process and (maybe) keeps

any moisture from getting on clean pants or socks.

How about a powerlift chair so you won't have to work so hard to get him out of

the chair? (We found one for Mom at a garage sale for $50.)

Maybe your kids could arrange set times or hours each week when they could

guarantee they'd be there to help?

Please keep on taking care of yourself as best you can. If this means another

NH admission for him or for both of you, then we'll cheer your decision and

still be here on-line for you, ready to listen to your concerns.

You are doing an admirable job of caring for your husband and are to be

commended for loving him " in sickness and in health. " Thank you for your

wonderful example.

Sheila in IN

daughter of Louise, age 87, dx LBD 7/2007

Seroquel

9AM - 25 mg.

3PM - 62.5 mg.

9PM - 100 mg.

>

> Hello all,

>

> I am at the crossroads with Don. He is becoming too much for me to handle.

> He is very unstable and is falling more now.

>

> My doctor told me under no uncertain terms to get some help. Well not

> quite that firm, but this is the second time she told me. She said my health

is

> failing, and to do something fast.

>

> I told my daughter and she came over Friday night. She dragged out a

> mattress and slept on the living room floor. She didn't want to haul the

heavy

> bed again.

> She is 57 years old. She was up at seven when she heard Don. She took care

> of him with very little trouble. All went so smoothly I wanted to scream!

> Why the showtime now? I want the kids to see for themselves how rough it is.

>

> She said she would come by 7 AM Sunday but had to leave by 9:30 for her

> Bible meeting. You are right. Don and I both slept until after ten.

>

> I put his shoes on him to go to the bathroom, but couldn't get him up. He

> was leaning to the left very pronounced, and fell back on the bed three

> times, with me trying to keep him from falling on the floor. I put the potty

> chair right by his bed, but from experience I knew to put the back against

> the wall, as he has nearly turned the wheelchair over two times from landing

> hard. I finally got him almost situated, and he fell on the chair hitting

> the wall. He wouldn't release his bladder. UGH!

>

> I took his shoes off to get the soaked diaper off, and put his pants on.

> Well I forgot to replace the diaper, with all that was happening with us,

> and I put his pants on as well as his shoes. I started to get him up again

> and half way up I realized he had no underwear on. Back off with the shoes,

> and pants, then on with a diaper, then back on with the pants and shoes.

>

> Why not regular diapers rather than pull ups? They have caused more leaks

> than the pull ups, and he has been able to get the panty type down by

> himself when he really needs to go when I am busy.

>

> So, we are at the crossroads. Where to go from here? Not well enough to

> cope and

> he is not sick enough to keep down. He got up behind my back after lunch,

> and fell back into his chair, dragging the table back with him. Later he

> got up and walked around and nearly fell, while still holding a very

> pronounced Lewylean. I told him he was going to break a hip and would be in

the

> hospital a long time.

>

> I talked to my daughter and she was very sorry she wasn't here to help us.

> Well, it went so well when she was here why stay? She left a note and

> hoped we got plenty of rest. Good old showtime! Grrrrrr

>

> Now remember that I have an exceptionally bad back. Trying to do the shoes

> and pants are the hardest part, other than lifting. So I told Don, we have

> to do something. I suggested a nursing home for both of us, and yet told

> him that they may not take both of us, but he would have to go. He knows.

> After all the falling this morning he agreed with me, but not happily.

>

> I talked to my son on the phone but he is out of town, and won't be back

> until around six.

>

> The most I believe I can do is talk to the Hospice nurse and tell her the

> situation and see if she can help. I don't know if another NH will take

> him. I can't afford around the clock care. My kids are not available to do it.

> What to do?

>

> I've unloaded, because I am at the crossroads with nowhere to turn.

>

> Love you all,

> Imogene

>

>

>

> Love with a smile,

>

> Imogene

>

> Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

> in '05, but correctly diagnosed with LBD in March '06.

> A happy personality is contagious. Infect someone today

> Yours Truly

>

>

>

[Guest guest]

Hello, Imogene. This is in Kentucky.

Please let us know how it is going when you can get back to the computer.

You sound like such a sweet and caring person. I wish you the best of luck with

all the changes happening in your life right now. I hope you find a great place

where both of you can be happy.

Kentucky

>

> Hi Sheila,

>

> Thank you dear for cheering me on.

>

> Today, the Social Worker came and is going to try to get Don into a brand

> new NH

> for a five day respite. She said if not today, then tomorrow for sure.

>

> During that five days she is going to try to get both of us in together

> permanently, if I qualify.>