Re: Re: 24/7 cg

[Guest guest]

june,

very well written, and very true as well, i personally was the 24/7 caregiver

for my dad, my husband worked fulltime and came home and helped as well,

although the first year and half we were here daddy wouldnt let donnie work as

his job was to care for daddy and me. and then we had donnies sister move in

with us wehn dad got too much for me by myslef while donnie was at work,even tho

we had hospice bathe him and meals on wheels come for lunch it was just never

enough, with my own health issues, kidney disease, i overrode my own health

issues to care for dad, which made me wind up spending over 5 weeks in the hosp

and then daddy falling while i was gone within an hour of me ocming home he was

in hosp with broken hip and then not 3 months later daddy was gone. yes i still

have guilt had i taken better care of myself, i would have had better qualtiy

time with dad before he died, the last few months he was alive i wasnt able to

spend as much time with him as i wore out easily after being in hosp for 5

weeks. but.....

every caregiver whether 24/7 whether son/ daughter, niece/nephew, spouse, all

of us have our own individual hardships that we each endure, none of us wants to

be in our shoes or each others for that matter. some lo's need to be in a

facility or somewhere where they get the quality care they need that cannot be

achieved at home for whatever reason, maybe there are kids involved, maybe

there are other family issues, maybe there are health issues, maybe there are

money issues, whatever the case is, each of us have a very hard life cg for our

lo's i dont believe that any one is worse than the other as i havent walked a

mile in your shoes to say whether it is worse than what i have been thru. i

wish all of us would be able to find some place of peace, within ourselves to be

able to handle what we have been dealt. my dad would be very ugly to me

whenever i came back from going somewhere, and i had to deicde whether i gave in

adn didnt go anywhere and virutally become a prisoner in the house with his

disase or if i would tolerate his frustrations whenver i escaped, i chose that i

needed my escapes, and yes there were many times i cried from his hateful

atitude when i came back but the break i had away from lbd was worth the

'punishment' just my thoughts, hugs,sharon m

Date: 2006/04/05 Wed PM 10:33:28 EDT

To: LBDcaregivers

Subject: Re: Re: Now it's my Dad!

I'm going to answer both your posts with the

perspective from the 24/7 caregiver, not intending

that what you are saying doesn't have merit, but that

someone who has the full care of a person with

dementia has an extremely demanding position. My

kids, too, thought I wasn't patient enough, didn't do

this, didn't do that, should've done this, should've

done that, etc. However, they were only here

occasionally, and the person with dementia acts much

differently than he or she does when alone with the

caregiver. They tend to let the barriers down and do

and say things that they don't in front of others.

Also, from the spouse's perspective, when I first

learned that his diagnosis was that of Alzheimer's, I

tried to rationalize that it was something else; he

couldn't hear; maybe he had something else wrong that

was causing it; it was old age - anything but

Alzheimer's. Then, when it becomes evident that it is

AD (or LBD), the spouse, I think, goes into the same

denial that those who have terminal illnesses,

especially cancer, do. They think if they get them to

eat better, keep them busy, try to stimulate the mind,

and anything else they can think of, then the patient

will get better. Sometimes this happens for awhile,

and then the hopes are up, only to be dashed again

when there is a backslide. Also, most of us have

either just reached the so-called golden years of

retirement or are looking forward to it, and then you

see all your plans are gone. In my case, I had begged

my husband to sell our house, give our kids what they

wanted, put what we wanted to keep in storage and then

buy either an RV or a good vehicle and travel for

awhile - not for the rest of our lives. He did not

want to do this until it was too late, and then he

admitted that we should have done that. By then, it

was at the point he could not travel any distance, and

even a short trip to nearby Kansas City could turn out

to be a nightmare, particularly the next day which

made him more confused after a big day previously.

So, you have seen your plans vanish by the wayside;

and in my case, given up my job, and have become a

full-time, no-respite caregiver. In the

year-and-a-half that I stayed home with him, I can

count the number of times I left him on one hand. If

I went out for lunch, a two-hour maximum was it, and

then when I came back, he was like a child that had

been left with a babysitter, and would act up, so it

wasn't worth it most of the time. I could not go to

the basement, garage, or outdoors and leave him for

more than 5 minutes. If I did, when I came back, the

upstairs could have all the cupboard doors open,

lights on everywhere, sometimes the front door open,

although he didn't leave, and all kinds of things he

was " looking for. " Even tho I had said where I was

going, he couldn't remember, and then he would say I

didn't tell him. I had to take my shower before he

got up; your own personal appearance suffers in

addition to your health. Just doing errands was a

nightmare; getting them into the car, buckled in the

seatbelt; out of the car and into the store as they

were extremely slow; getting groceries, etc. If I

only had to run in someplace where I could leave him

in the car and still see him, I could maybe get by

with 5-10 minutes, but if I was much longer, he was

angry and said I had been gone a long time. Finally,

when my kids did keep him for a little while, they

soon found out that I wasn't just talking and that his

care was very draining, and one of them even told me

she didn't know how I had stood it for as long as I

did. About a half-hour was all she could handle. So,

in defense of the MIL/FIL, etc., they have my deepest

sympathy and respect, as they are doing the best they

can under the circumstances of probably lost sleep and

loss of their own selves. And, also, remember they are

much older and probably have some health issues as

well, and the full-time care, ability to lift, etc.,

is not easy. My husband weighed 183# and was over 6

foot. I am 5'3 " at my tallest and weigh much less.

When he started falling, or in some cases throwing

himself down in anger, I could not get him back up,

and he was unable to understand how to get turned to

brace himself with his legs, which were also gettting

very weak. Another thing that probably affects the

caregiver, too, is that when someone else came in, the

LO would be so nice, laughing, teasing, and acting

just fine, and then when they left, would treat the

caregiver much differently. I was also told that I

didn't do anything to help him, was mean to him, hurt

him, etc., and it was so hurtful, as I basically had

given up my life to take care of him. Your own life

is on hold - you can't move forward - and if you do

something that is pleasurable to you, there is a lot

of guilt involved that you could enjoy something when

they are not able to. Also, in addition to this

full-time care, the caregiver has all the

responsibilities he or she had when the spouse was

well in addition to all the things that the spouse

did. Sometimes it was just little things, like

putting dishes in the dishwasher, helping clear the

table, filling ice cube trays, vacuuming, etc., but

everything they did took some burden off the

caregiver. It got so that my husband tried to put

dishes in the oven, tried to get ice cubes out of the

cupboard, could not start the washer or dryer, vacuum,

mow the lawn, water the lawn, and on and on.

Sometimes, just those little tasks seemed too much for

me when I was exhausted.

Sorry to be so lengthy, but I wanted you to hear part

of the main caregiver's side as well.

--- wrote:

> Tori,

>

> Yes - I understand what you are saying. My mother

> did everything

> for my dad during their marriage - up until the last

> several years,

> and now he just thinks of all he has to do etc. And

> - when he lets

> go and just slides downhill, he totally doesn't

> think about the fact

> that she's now at the nh with no one to visit her

> except when my

> brother and I aren't working (which isn't much).

> But - at this

> point, at least I'm glad he is getting some help -

> IF they do. Big

> question.

>

> I understand about your MIL saying things like she

> thought Dizz was

> sabatoging her party - my father used to get mad at

> my mother for

> doing whatever, and it wasn't her, it was the

> disease. He still

> yells at her for speaking too low, since he's so

> deaf, but that's

> what LBD and PD symptoms do - and so she's speaks

> very softly.

> Lately, she's been with it enough to be agravated at

> him back, and

> on occasion when he says kind of meanly, Doreen, I

> can't hear you,

> she'll start yelling what she was trying to say.

> I'm like, Yay,

> MOM!!

>

> I would go over sometimes and he would go through

> this big litany of

> what my Mom did the last couple of days, like she

> did any of it on

> purpose!!

>

> I know I'm not alone and I really appreciate the

> support. It helps

> knowing others are dealing with the same issues,

> although I sure

> wouldn't wish them on anyone!!

>

>

>

>

> > Hi, everyone,

> >

> > I need to vent, I'll try to keep it short. You've

> heard a lot

> about

> > my mom and that she's doing fairly well, but my

> dad is a difficult

> > man, and he is causing a lot of the chaos right

> now. Well, over

> the

> > weekend, his ongoing chaos turned into a call to

> 911 and a visit

> to

> > the hospital, since he felt 'so awful' and was

> somewhat feeling

> > suicidal. As I've said before, he is 'all about

> himself'. Well,

> my

> > brother got the initial call so I let him deal

> with it as then I

> > went to see my mom seeing as my dad sure wouldn't

> be visiting her

> > that day.

> >

> > He ended up coming home, since no one really takes

> his talk of

> > suicide too seriously - so I have really mixed

> feelings about

> this.

> > I understand that he could be seriously depressed

> and due to his

> > personality, he has always had issues with

> anxiety, so I think

> it's

> > a combination of both. However, I also feel that

> he is just

> sitting

> > around feeling sorry for himself, because of what

> my mother's

> > illness has done to their life. But instead of

> spending time with

> > her now while she is the best she's been in two

> years, he sits

> > around and bemoans his fate, like nothing like

> this has happened

> to

> > anyone but him. Or all the stuff that goes along

> with daily

> life.

> > And of course, to heck with her, she can't

> possibly be as

> miserable

> > as he is (hah - like the nursing home is some type

> of wonderful

> spa

> > or something!)

> >

> > I really battled these contradictory feelings on

> Saturday, and was

> > so depressed on Sunday I never got out of my

> pajamas. So when I

> > finally called him later on Sunday, after talking

> to my mom on the

> > phone, I told him that I wasn't much better off

> than he was, I

> > couldn't face the day that day either. That kind

> of shocked him a

> > little bit, but heck, what kind of life am I

> living?? When I'm

> not

> > working or traveling, I'm visiting or taking care

> of one or the

> > other or both of my parents. To heck with my

> friends, any

> > relationship I might want to have, or anything

> else other than

> > household responsibilities. I raised my children,

> (including step

> > ones!) and then as soon as I'm a little bit free

> again, now I get

> to

> > spend the remainder of my prime taking care of my

> parents!!

>

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