Kudos

[Guest guest]

Dorothy,

Don't be discouraged.  Wow!!!  You're an inspiration to us. You are to be

commended for caring for your mil and being so creative in

your problem-solving. Foam pipe insulation to cushion the bedrails!! 

Brilliant!! 

I agree with you about the small doses of meds, especially the antipsychotics. 

When the neuro started Mom on 25 mg. of Seroquel, I cut that in half and we saw

results as we increased the dosages in those tiny, 12.5 mg. amounts.  The

elderly just don't handle meds the way a young adult can, so smaller doses are

appropriate. 

For your mil's constipation issue, have you tried Miralax?  It's a powder that

is stirred into liquid.  Can't even taste it.  Easy to adjust the dose.  My

mom has been using it regularly for years now.  No, we don't even worry that

she is " addicted " to laxatives.  Our goal is comfort.  With that goal in mind

we even discontinued the PT she was having b/c she complained every time we

tried to exercise her legs.  It was a hard decision to make, but with comfort

as the goal, we admitted it was best for her. 

Caregivers:  that's a hard problem to solve.  Keep networking; ask for

recommendations at the doctor's office, at a senior center, and at church.  The

caregivers we have hired (to cover approx. 16 hours/week) have all been found by

word of mouth.  Only one didn't work out, but the rest have been amazing and

have become friends. 

I hope you're able to have your getaway trip with your parents.  The festival

sounds awesome (I grew up in Concord and will always miss Cali.), so go and

enjoy it for all of us.

Sheila in IN

daughter of Louise, age 88, dx LBD 7/2007

Seroquel

9AM - 37.5 mg.

3PM - 62.5 mg.

9PM - 100 mg.

Posted by: " dsinouye "

fullcircle@...

 

dsinouye

Sun Nov 14, 2010 8:38 pm (PST)

I and husband are caring for my 93 old mother in law. She was

diagnosed 3

years ago and before that we were told she had dementia. The LBD and

Parkinson’s was the new information that fit the picture to a “T†of

what

we have been struggling with the last 7 years. My mil had trouble

several

years before and I really wonder what was going on then – she was

anorexic

for the last 20+ years, and she fell a lot as she had very little

balance.

I don’t know where we are now in stages except a lot of things are late

stage, more and more it seems.

This week has been very difficult to say the least. She is still

ambulatory

but perhaps barely as it is a struggle to coach her to lift her feet,

take

big steps, don’t reach for the wall (that’s more than 3 feet away) don’t

sit

down etc. She doesn’t know when she’s about to have a bm or finished

with

one. The constipation is constant – the bowel is just not moving it

through. Have tried the ducolax sup several times as directed by her

docs

and nothing. She’s very confused, out of it and very very crabby. She

is

biting all our heads off regularly. Several times this weekend her

breathing is rough – it’s like she’s forgetting how to breath. The

nebulizer no matter what we have tried as far as passiveness she hears

that

droning motor and starts huffing and puffing. I thought I was imagining

things until I tried many times just switching it on and seeing and

yes,

the sound makes her start panting hard like she does when the mask is on

her. We are now just doing the neb with mask while she is lying down

comfortable and hope she’ll go to sleep and sometimes she does but then

starts the hard panting again to the point of hyperventilating and

making

herself sick. Most of the time when I take the mask off she doesn’t

even

realize it’s off and still breaths like a runaway train. The giant

hiatal

hernia is causing the same problems with nausea and pain from excess gas

and

we keep trying to get her to sit or stand up straight so she’ll belch

and

relieve the pressure – this on top of the very small meals, etc. She

doesn’t remember why or understand why her stomach hurts. And as far as

trying to explain why she feels bad and how that relates to what she’s

doing

it’s not getting through the fog though she nods and acts like she

understands. She is groaning almost constantly now – and we are

constantly trying to figure out what the groaning is for. Pain? Nausea?

Hungry? Need to go to bathroom? None of the above? I’ve asked her

why

she is groaning so much – she says it’s a habit. Or she says I didn’t

groan

I said (something). I give her feedback – you just started groaning,

are

you trying to say something? Yes, she was saying she wants some Jello.

I

tell her it didn’t sound like that but I’m very glad you can tell me you

would like jello. So this is the speech thing I read about I guess.

We have been working hard to keep her body strong and preserve her

ability

to move as much as possible but now we’re watching it take her mind away

a

lot more and her ability to control her body. This afternoon as I was

trying to get her to do her leg lifts she said she was done she didn’t

want

anymore. I asked her what she was talking about - done with these

exercises

or done for the day… she said “everything!â€. She meant everything too.

She said she doesn’t want to be alive anymore, it’s too hard, she’s

done.

At the same time we are strapped for finding good competent affordable

caregivers. We had one but after 5 months she messed up really bad and

didn’t think it was a problem and I had to tell her not to come back. I

had the feeling she was not going to be around long when my mil started

having more and more trouble. Maybe she couldn’t handle it. We have

another caregiver now for the last 2 weeks and so far ok but not as good

as

I’d like. We really need an angel at this point. I have a friend also

who

is helping a little. We are still going to try to go see my folks for

the

weekend and have a grant from an local non profit to go towards respite

care. My folks are just a couple hours drive away but it may as well be

20

hours it’s so hard to get away anywhere. I hope to go with my mother

to

the Mandarin festival in Auburn – which we’ve done every year. Usually

she’s the one needing a sanity break (my father’s knee replacement was

an

ordeal!) but now I’m really looking forward to it also… afraid to look

forward to it too much because it might jinx it.

My mil’s doctor says she is not ready yet for hospice, they will expect

she

is in a lot worse condition. I’m wondering maybe try seraquel again

and

start out really low. She didn’t do well with the lowest dose pill but

maybe if I cut it in quarters she could do better with a quarter of it?

She’s taking Remeron now at night and after several attempts I had to

start

her on a quarter pill for two weeks before I could go to half a pill and

it’s helping her at night as far as I can tell she relaxes a little and

then

sleeps some. Otherwise she is up all night tossing/turning/ agitated.

Her

doc said ¼ pill wouldn’t do anything but it really did a lot and she was

pretty knocked out for the first 4 days before it started to improve to

where she could sleep some at night and function in the day. That was

about

two months ago and now she is still sleeping some of the night but

thrashing

more too and some days barely coherent. I got pipe insulation foam

and

padded her bed with it and used vet wrap tape to hold it on. That way

the

bed rail functions but it doesn’t bruise her when she hits it all the

time.

She grips it at night like she’s on some kind of amusement park ride

(mystery to us why) her arm was just black and blue all over because of

it.

That was a good idea that worked at least.

I think we are close to being able to get another hospital bed through

medicare and wondering if there are really any choices from the rack

they

sent before that was bent and rusted and I fight everyday. And if I

should

try to spring for an automatic version because I know I will not be able

to

crank it manually. And then wondering about practical things to come…

and hoping we really do get a break this weekend, we could really use

it.

If this reads like a “report from the front line†it is – we are really

feeling it now.

Dorothy and Art