Re: Welcome Liz

[Guest guest]

Hi Liz-

Welcome to the caregivers group. My dad also had to have

a PEG tube put in for feeding. It was in for a little over 3 months

then came out and my dad persevered. He lived another 2 1/2

years longer.

Much of what you mentioned with your mom my dad had went

through as well. The only difference is my dad was unable to

talk the last 2 1/2 - 3 years of his life. I didn't know what the

hallucinations were, just that he was very fearful and extremely

agitated.

You will make it through this. Only thing I can attribute my

strength to is my inner faith. I vowed to my dad I would stay

by his side 'til the end, and that we did...we made it through

together.

Do take care of yourself through caregiving. You will need

your strength both physically and mentally. Just know that

people all over the world are thinking of you and keeping

you in our prayers.

Hugs-

Sandie and

Des Moines, IA

-- new to group--mom with LBD

Hello Everyone,

I'm brand new to this group, having just learned about it from another

website. Five years ago my mom had an emergency appendectomy after which the

slow decline into alzheimer's began. My dad has been caring for her 24/7

ever since. Last August I visited and found that Mom had progressed beyond

asking for help and Dad still was sure he had everything under control.

However, after consultin with my brothers, I had already begun plans to

return home to California by fall to live with the folks (Dad is 89 and Mom

will be 88 in Oct) in order to help care for both of them and keep them home

as long as possible. One year ago this month I was still living in Kansas

and packing when my mother got severely dehydrated and malnourished and was

hospitalized. While Dad tries and does the best he can, he couldn't make Mom

eat or drink. While in the hospital and rehab, Mom was diagnosed with LBD;

however, we believe it has been coming on for some time now. We had seen

dramatic changes presumed to be Alzheimer's over the last 5 years, but with

the rapid deterioration, new symptoms croped up over night. The PTs and

doctor basically wished us luck when we took her home, giving her 4-6 weeks

in her then-current state. She had a feeding tube inserted in her belly

while in the hospital, but Dad insisted it be removed before taking her home

per their agreement to not allow each other to be sustained artifically.

When we brought her home, she was 100% invalid, unable to help with

anything, unable to walk, to even keep her eyes open and engage. We (Dad and

I) took total care of her, spoon feeding her Ensure Plus three times a day,

plus some morning oatmeal and thickened juice. Over the next couple of

months she regained enough strength to sit up on the edge of the bed and in

chairs, to walk with assistance, and eventually regained the ability to feed

herself. She gained back about 8 pounds (to a high of 105) and maintained

for about 9 months. Recently she dropped to 100, but seems to be holding

steady again.

Today she pops up out of her chair to wander off on her own; however, we

try not to ever let her go far as she falls easily. So one of us is with her

24/7. I'm working about 20 hours a week outside the home while Dad sits

with Mom. At night I sleep with a baby monitor on in my room so Dad can get

some sleep when he takes his hearing aids out. Occasionally Mom sleeps

straight through from 9pm to 9 or 10am. Most nights she's awake every 1-2

hours all night, often with potty-calls every couple hours, and to get up to

cook, take the kids to the library, get on the train or ship, or whatever

the current scenario in her brain is. I sit with her and tuck her back in

until she falls asleep again. Typically she stays down after about

2:30-3:00am, so most nights are pretty short for me.

The doctor and PT Mom was treated by in the hosptial and rehab were not

her primary care physician. Since she came home and for the last year we've

been working with Mom's family doctor who still doesn't think she has

Parkinsons/LBD. Why he doesn't think so I don't know. Reading everything I

have so far over the last year, it's so obvious to our whole family that

we're getting somewhat frustrated. Unfortunatley Mom and Dad have been with

the same doctor for so long they don't want to change and we fear someone

new would confuse Mom more. Plus, it's hard to find someone who makes

housecalls!

Just this week the doctor visited (he actually makes housecalls for

elderly patients!) and is having us try yet another drug--Risperdal. I pick

it up at the pharmacy tomorrow. I downloaded the clinicals today and have

been reading up and it looks pretty ugly. However, Dad says we'll do what

the doctor says and see what happens. We had previously tried Aricept

(twice) and Zyprexa, both of which made her an absolute witch from hell and

agitated ALL of the time, whereas without anything she's sundowning and

frustrated, hallucinating, and just crazy, but a pretty easy going crazy

much of the time, with only occasional fits of agitation, which we can deal

with. It will be interesting to see how this new trial works for us. Her

daily meds of the last 5 years are for thyroid, heart and blood pressure.

I have yet to actually talk to anyone (or email/chat) who has hands-on

experience with another LBD patient. I look forward to reading the archives

and exchanging messages with the group. Thanks for listening.

Liz in SF Bay Area, California

Granberg

eag7799@...

@>-------/-----------

I can do all things through Him who strengthens me.

Phil. 4:13

[Guest guest]

Hi Sandie,

Thanks for the welcome. I'm finding I'm checking this site more often

than my email right now! It's such a God-send!

Mom only had her feeding tube for about 3 weeks before we took her

home. She's been on her own ever since. For months she would drink 2-3

bottles of Ensure Plus (loves strawberry & butterpecan), one with each

meal, plus some food. Now we're lucky to get one and sometimes part of

a second. She's still maintaining and most days eats some, but it's

hard to imagine how she stays alive on what little she takes in! The

human body never ceases to amaze.

Mom has some scary hallucinations, but more often she's become a

teacher and is surrounded by sometimes up to 15 kids (she'll count

them for me) or be wanting to know when " they will ring for dinner " as

she's on one of her cruise vacations again. Sometimes they make us

laugh, others it's real sad. She has been crushed several times that

her mother died and we didn't tell her. Obviously she was part of the

whole scene as it was 25 years ago, but she has forgotten completely.

Same with her dad, she'll be looking for him or will have seen him and

then gets angry when we tell her he's in Heaven. Sometimes she just

won't listen to us, so we call up her sister (the healthy one) and let

them talk about their parents. Aunt has been real good about goin

through this with her over and over.

Mom, also, is starting to have more random problems with language. She

either can't find the right word and gets frustrated or often just

strings words together that don't make sense and then expects us to

understand. Her baby sis who has AD is now unable to verbalize at all.

I'm continuing to work 20 hours a week with a marvelous group of

people. We spend our lunch hours trading stories about our folks as

they also have parent-related issues. It's a great release. I'm also

very involved in my church and in my Eastern Star chapter which gives

me a room full of " mom's " who have their act together and who I can go

to when I get frustrated at the loss of my mom's ability to be there.

Weekly bowling gives me a place to go throw things. ;-) While at home

I'm able to do some website management and an online class from my

laptop which is across the room from Mom's recliner. It sounds like a

lot, but actually balances out nicely, giving me good outlets along

with the ability to be here with the folks.

Once Dad is down after his surgery things will shift some, but my

bro's and I are looking for some outside help to come in so I can

continue with my activities and work.

We all deal with this the best we can. I told the folks for years that

I'd move home and help when they needed it. As it turns out Mom was

too far gone to know she needed help and Dad too stubborn to ask for

it when it was time. That's when my bro's and I stepped up and decided

it was time and I just moved home. The plan is to stay right here in

the house I grew up in until both folks have make their life

transitions. What happens after that is still in God's hands. I live

by faith every day and know from the peace in my heart that I'm in the

right place at the right time right now.

Blessings,

Liz