Re: Re: 08-08-08

[Guest guest]

Dear Jannis,

 

My heart goes out to you, and as a daughter who's been in much the place it

sounds you're describing, I wanted to add my two cents. My dad, whose stroke

left him incapacitated on one side of his body, spent three years refusing to

let anyone else take care of my mom, who had developed severe PD with dementia.

She kept falling, he would try to pick her up. She couldn't move on her own at

all, dress, bathe, etc. He could barely do any of those things for himself, but

insisted they were just fine. He would get bored or distracted of course, and go

off and leave mom. This was in their own " adapted " home. Then he decided he

wanted to move to a senior apartment building in a nearby town, and their new

doctor wrote his approvalthat they could live without assistance!  Dad

maintained all legal rights, so I thought I could do nothing. My only sib, a

brother, refused to get involved. Another six months of this and mom fell out of

bed. Dad picked her up and

pulled her shoulder out of alignment. Neither could help themselves,

housekeeping didn't exist, they had poor hygiene, couldn't manage meds, etc. A

caregiver went 6 hours a week, but mostly dad refused to let her do anything. I

called agencies and finally learned I could rely on the " danger to self and

others " law. The local police chief told me that if he knew dad was left alone

most of the time responsible for mom, he would have to step in for the public

good. And a court could decide to move them to a care center.

 

S before dad caused or the parents encountered further harm, I met with the MD. 

His excuse for " allowing " them into an ILF? - he thought dad would find out they

couldn't handle it!  Truly an idiotic medical decision. I told him quite the

contrary, and that he'd just encouraged my dad's poor decision-making. I didn't

want him as their doc.

 

I found another local (they were in a small town) doctor and told him the story.

He explained what he would tell my parents. I told my dad the next doctor visit

was for mom, and told her (not that she actually understood) it was for

dad. Iwas already usingsuch " loving lies "  to get a few needed things done in

their apartment and with their paperwork. Once the doctor saw just their

physical incapacity, he wrote orders they could not live alone. My dad was

enraged but I/we had to proceed, as he could easily hurt himself or anyone else.

He could let the washing machine overflow, leave a stove burner on, forget my

mom needed lunch, etc. Taking this step and every one since  was quite selfish:

I knew if anything happened, I'd feel guilty forever and couldn't handle it. 

 

The doc was respectful but firm: explained he had a legal and ethical

responsibility to protect everyone. He said that if dad wanted to stay at home,

he'd need to accept full-time helpers. Healso discussed alternatives. My dad

threatened to kick out the helpers (combination of me, another family member,

home care and hospice (my mom qualified due to PD/LBD) and  tried

frequently. But he was glad to be able to be at home and " responsible for " my

mom. Over time, he lost interest in trying to do for her. Several years

later, when he, too, needed 24 hour care, I moved them to a center. The docs

think he'd had early stage dementia, too, but showtime was strong the first

couple of years.

 

Dad was always angry that I ruined his life, was spending his money, was sorry

I'd been born, etc. - and refused to speak to me for a year after they went home

with help. I could be in the same room and he'd turn away.

 

I would hate it if someone interrupted my life in this way, I know. But my folks

were suffering in multiple ways. Dad was at a loss, but too proud to admit need

or unable to be rational about getting it. As the MD said, his refusal to make

obviously-needed changes was a reflection of his own poor mental health.

Whatever, they were on track for a major disaster, and I couldn't be part of

that.  Better to come from the doc or another authority figure, of course - no

threats, just the facts. This did help dad maintain his self-respect and feel

like he was still in charge. Mom did better and was out of physical danger. I

think her actingout duringthat time ws in part because she was scared but

couldn't verbalize it. It took a lot to sort through the paperwork, interview

agencies, figure out available benefits, visit care sites, line up friendly

visitors for the folks, etc.

 

Adult kids of failing parents often tell this kind of story.  Sometimes it's not

clear who and what resources are available, and seeking them out can be a

struggle. And yes, many nursing centers are pits, although good ones do

exist. Is there a decent day program available your dad might be

interested in? What do your parents' MD and hospice say is possible in terms of

additional or full-time care for your folks at home? Can the hospice doc and

staff be the route to getting needed help at home? Depending on insurance,

income, vet's benefits, etc. a combination of assistance can often be cobbled

together.

 

You're right, Jannis, we don't know how long the journey may take, and it is a

rough one in the best of circumstances. Please let us know if there's anything

practical we can help with. You and your folks remain in my thoughts and

prayers.

 

Lin

Subject: Re: 08-08-08

To: LBDcaregivers

Date: Saturday, August 9, 2008, 12:21 PM

Sharon ~

 

My Mom is being cared for by my Dad, in their home.  Their home is

handicap-adapted, and yes, she has a walker, and a wheelchair, but she cannot

support weight on her legs at all.  She has to be lifted from the bed, lifted

into her wheelchair, lifted onto the portable commode, etc.  She can't even

adjust herself in bed or anywhere.  She has to be pulled into position whether

in her bed or sitting in her recliner.  She cannot bathe herself, someone has

to provide every care for her.  She can't dress herself.  She can't do

anything but attempt to feed herself.  A meal can take hours to accomplish. 

She will not allow anyone to feed her.  She zones out with the food in mid-air

and will sit that way for a good half-hour. 

 

Where the problem lies is in letting her get out of the bed with rails and sit

in her recliner.  Dad, bless his heart, is 84 years old.  We haven't been

able to make him understand that he CANNOT take his eyes off her for even a

minute while she's out of the bed.  He has to sit there in the room with

her, awake and alert.  However, he gets antsy and wants to do something, so

he'll go into the kitchen and leave her alone in the recliner...or he'll

go to the utility room and work on the laundry...not thinking about the fact

that from time to time she'll get it in her head to get up and go

someplace!  The moment she tries to get up, she falls.  The last time she fell

(last week) she got a big bump on her head, and that's what the hospice

nurse was concerned about.  Hospice is concerned that Dad's not capable of

taking care of her in home.  He's left her alone on the portable commode

also, and she's fallen there, tipping the commode and its contents

onto the carpet.  He does nothing but complain about being there with her,

yet he won't hear of anyone coming in to help.  I've tried to fix it up

for my ex-wife to be there, to help out, and he said, " well, maybe about 4

hours a week " .  The point is, he doesn't want to have to pay anyone

any more than is absolutely necessary, and he feels he's doing an adequate

job.

 

So, in effect, Dad's tied my hands.  I don't have POA over Mom.  He

refused to even think of it, much less allow it, and as her husband and next of

kin he has all the power.  I'm just trying to find ways to deal with a

situation that is becoming more and more impossible.  I've had to give up

my night and Saturday school teaching because last semester nearly killed me,

teaching all day, running to their house on my lunch hour, checking on them,

going to work on Monday and Wednesday nights, and Saturday mornings, and

spending all the rest of my free time over at their house tending to Mom's

needs and listening to Dad's complaints of aches and pains and depression,

on and on and on.  When I go there, I don't have caregiving for ONE

person...it's for TWO.  

 

The hospice nurse did report it to the social worker with hospice, and he

contacted me and, of course, they're pushing for nursing home care. 

That's where the real dilemma comes in.  Dad won't allow it, and I have

no power, and I still don't feel that nursing home care is the best for her,

either.  She can't socialize, she can't do anything other than either

sit in her recliner or lie in her bed, but at least when she's home Dad will

put her on the commode and keep her clean and dry.  I've seen far too many

elderly people in nursing homes sitting or lying in their urine or feces, or

slumping in wheelchairs and drooling while being totally ignored.  If

they're like Sherry's mom, up and socializing and talking and

everything, that's one thing.  If they're like my sweet Mom,

they're ignored.  She's not lucid enough to hold a conversation, she

doesn't know what day it is, she doesn't know the date, she didn't

even know her own birthday.  She doesn't

mark the passing of the daytime hours.  She won't allow a television to

be on.  While she can't dress herself, she can remove underclothing. 

We've tried to keep panties and a pad on her, we've tried adult diapers,

etc., and she manages to get them off. 

 

Thankfully her hallucinations, while still present, don't scare her as

much.  She's never combative, she's never aggressive.  Most of the

time she's non-responsive. 

 

So, we're in a situation that can't get better, and we know that it

will become worse.  I hold no illusions about the future.  There's nothing

that can be given, nothing that can be done to make it any better.  We're

on the last leg of the journey, I'm afraid, but who knows how long the

journey will take?

Jannis

Redefining Normal Every Day