Re: Confrontation

[Guest guest]

I am sorry to hear about Wil. It is a hard situation for you both, but one

thing comes to mind. Something we all know, but often never think about.

It was mentioned in this very group. You must take care of yourself in

order to care for others. As I said, a practice we all know about, but as

caregivers, we often never do. So I am happy you will be painting. I do

hope you don't give that up. We all need " outlets " . I like your idea of

brining in some outside resources for assistance too (the housekeeping) as

well as your idea about him talking with his sister and two daughters.

Keep up the good work and good luck with things.

> Confrontation

>

> I told some friends of mine that this email group did a " confrontaton "

> with

> me. You know, when friends and family of a drug addict surrond him and

> tell

> him about what he is doing. That's sort of what the response to my " bad

> weekend's " messages was. And I did feel that it was done with a lot of

> love

> and caring, not just for Wil, but for me too. So thanks to you all for

> your

> comments.

> So...I've had to face some realities. One is the very simple fact that I

> will have to do more for him than before....Go with him to Physical

> therapy, which he is starting next week, clean up after him more, get him

> to stop working, empty his wallet which he did find eventually.

> All of this is more of him, and.....less of me....I guess I'm selfish.

> Some

> of you know, I work part-time and also paint. The painting part is out the

> window right now. But luckily, I had signed up for an all day painting

> class that starts next week. That's one day a week, for a month, of not

> being at home and able to just work on my stuff. Just as I told Wil I was

> going to be his " adjunctive brain " , art is for me, my adjunctive soul.

> It's

> not an option and that has also been part of the grieving process for me.

> We went to see the physical therapy place which, luckily, we can walk to.

> Wil didn't want me to go with him. I could see he would need a lot of help

> there, starting with even just the lockers where you put your cloths...it

> was complicated with a token and a key and returning the token. So I told

> him I'd give him a canvans bag to keep his stuff in.

> After almost two weeks of problems and Wil being very angry and resistant

> to me, he suddenly, sadly, came around to the fact that he needs to stop

> working. I helped him work out a date for this. He fears what he will do

> with himself when he stops working (it was only 3 hours a week) Last night

> I thought of an idea I'm going to suggest to him: That he devote more time

> to talking to his sister, who has Vascular Dementia and his two daughters

> who both have emotional problems.

> The next things I want to put in place is getting a housekeeper for a few

> hours a week to stem the tide of chaos that Wil creates, cleaning out his

> wallet (I called it " steamlining " to him) and really trying to organize

> some kind of outing or event each week to keep him interested: going to a

> lecture he won't understand or a concert or dinner.

> Wil really isn't ready for me taking over all his everyday money but I

> think I'll try to get him to put his savings in my name. He signed a power

> of attorney to me years ago but I don't feel we are ready to use it.

> Last night he started to yell in his sleep and I asked him what was the

> matter. He said ( he talks perfectly cleary in his sleep), " You know

> damned

> well what's the matter...There's fire and floods and earthquakes and

> nobody's telling me anything " I guess its a dream about his growing

> acknowledgement of what is happening to him. Imelda

>

> To learn more about Lewy Body Disase, please visit the Lewy Body Disease

> Association site at: <http://www.lewybodydisease.org>

>

>

>

>

[Guest guest]

Imelda, you are a quick learner! Just a couple of things, I think it is

" adjunct brain " . :-)

You might try a cleaning person who also keeps track of Wil. I've even had

painters and

other workmen clued in, and prepared to call me on my cell. I don't know that

it would

take care of a big emergency, but it is better than nothing. I, like you, need

a certain

amount of freedom to do what I need to not lose myself.

This week Jack is away at the VA for respite. Perhaps he does not belong

there....He

is much younger and physically in much better shape than anyone else there. I

have

to wrestle with guilt when I leave him there, but it's affordable and I know I

can't keep

going without a break. We get one week every two months, and by the time it

nears,

I can hardly wait...even with the guilt! Mai-Liis

[Guest guest]

Imelda, this is all so sad. Yes, I think his dream had to do with the

conflagration that is overtaking him - and YOU. You mentioned so many things

that need to be done. Don't try to rush them - they'll be done in their own

time as needed. I hurt for you as you come to this, and so glad you will

make time for your painting. I'd think it a must. Cheryl

[Guest guest]

Imelda

Sending hugs to you and Wil. This must be very difficult for you, and

for Wil...I can't even imagine. Many times I tell the staff at my dads

nh that I realize how hectic and chaotic it is to do caregiving for my

dad...just imagine how he feels on the inside. It must be an awful

place that your husband has found himself in, knowing he truly will

never be able to fight his way out...keep us posted!! Hugs to ya!!

Sandie

Des Moines, IA

[Guest guest]

Imelda,

You really are doing what you need to do for both of you. You do need

to keep painting for you.

When I got to the point you are I just started doing what I thought was

best. I took Mom along and she went with it. I was particularly

thinking of the savings account. I didn't try and get her to " agree " to

anything. I just told her we were going to get some bank work done and

took her and was just lucky enough she sat and let me talk to the lady

and it was done. Otherwise if I wanted her to agree I think I would

have argued for a while as she was getting paranoid. And it was what

she had discussed that she wanted to do. {I already had DPoA long

before.} Once I found I could do that, it was much easier to make

decisions I knew I was going to have to make. It was really less

stressful for her in a long run. The stress of the argument with her

was greater for her.

And it is the fine balancing act I found myself in with her. I was

trying to maintain her independence and take care of her too. And there

are those things that have a time restraint that I just started to do.

Hope this helps give you some ideas.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Mai-Liis: Every cloud must have at least a silver dot. Are you suggesting

that all this might be my excuse to have a cell phone? I am trembling with

excitement since, like all New Yorkers without, I sneer at those

with....but secretly those tiny little metal things are so cute. I could

make my daily call t my mother in the street, unlike everyone else who is

either loudly talking about business or sex. Can you think of any reason

I absolutely MUST have a Palm Pilot too?

Who pays for the cleaning person etc.? This is a sticking point for Wil

since he is always trying to find a way to save money so it will be there

for (mostly) his daughters when he dies. I like the idea of someone who

would do double duty. Maybe even if just for a couple of hours a week.

What I will need to someone to escort him to physical therapy, which is

certainly going to be at least twice a week. I can do one but how to

advertise, find someone for this, again about two hours a week.

As for Jack going to the hospital so you can rest. It's funny, when Wil and

I worked at a big, city hospital, he always brought in the family of the

psych patients first thing. He identified the mother's needing a rest as a

major reason for hospitalization. Of course he couldn't put it as a

diagnosis but it was there and he was very sympathetic to it. Imelda

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

[Guest guest]

Mai-Liis: Every cloud must have at least a silver dot. Are you suggesting

that all this might be my excuse to have a cell phone? I am trembling with

excitement since, like all New Yorkers without, I sneer at those

with....but secretly those tiny little metal things are so cute. I could

make my daily call t my mother in the street, unlike everyone else who is

either loudly talking about business or sex. Can you think of any reason

I absolutely MUST have a Palm Pilot too?

Who pays for the cleaning person etc.? This is a sticking point for Wil

since he is always trying to find a way to save money so it will be there

for (mostly) his daughters when he dies. I like the idea of someone who

would do double duty. Maybe even if just for a couple of hours a week.

What I will need to someone to escort him to physical therapy, which is

certainly going to be at least twice a week. I can do one but how to

advertise, find someone for this, again about two hours a week.

As for Jack going to the hospital so you can rest. It's funny, when Wil and

I worked at a big, city hospital, he always brought in the family of the

psych patients first thing. He identified the mother's needing a rest as a

major reason for hospitalization. Of course he couldn't put it as a

diagnosis but it was there and he was very sympathetic to it. Imelda

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

[Guest guest]

Mai-Liis: Every cloud must have at least a silver dot. Are you suggesting

that all this might be my excuse to have a cell phone? I am trembling with

excitement since, like all New Yorkers without, I sneer at those

with....but secretly those tiny little metal things are so cute. I could

make my daily call t my mother in the street, unlike everyone else who is

either loudly talking about business or sex. Can you think of any reason

I absolutely MUST have a Palm Pilot too?

Who pays for the cleaning person etc.? This is a sticking point for Wil

since he is always trying to find a way to save money so it will be there

for (mostly) his daughters when he dies. I like the idea of someone who

would do double duty. Maybe even if just for a couple of hours a week.

What I will need to someone to escort him to physical therapy, which is

certainly going to be at least twice a week. I can do one but how to

advertise, find someone for this, again about two hours a week.

As for Jack going to the hospital so you can rest. It's funny, when Wil and

I worked at a big, city hospital, he always brought in the family of the

psych patients first thing. He identified the mother's needing a rest as a

major reason for hospitalization. Of course he couldn't put it as a

diagnosis but it was there and he was very sympathetic to it. Imelda

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

[Guest guest]

In a message dated 7/13/02 5:55:55 AM Central Daylight Time,

imelda4@... writes:

> I like the idea of someone who would do double duty. Maybe even if just for

> a couple of hours a week.

I'm almost " home " on this one. About a year ago I recalled the cleaning lady

that used to come while I was working. She cleaned again, but my real need

was to have someone here with Bob while I went out for awhile. My only

respite. I increased her time to 5 hrs biweekly, allowing time for her to

prepare him some lunch or whatever. Not enough for me, but better than

nothing. At that time he refused to consider having a " companion " and made

my life miserable whenever I mentioned it.

When things deteriorated last winter I finally called a sitter who did just

that. She sat and watched TV and couldn't remember to press the Start button

on the microwave when Bob finished his lunch so he could have his hot coffee.

Sitters here come in 4 hr blocks minimum (can make it 5-6-+). Granted, she

is CNA, but. . . For an extra $20 I can have my whole house cleaned!

I have approached Gwen about attending training so she would know how to help

Bob if he fell, walk safely with him when he's wobbly, etc. I think that

once her girls are back in school in August we can find her an opportunity to

learn the things I would want her to know so that I wouldn't have to wonder

prior to each visit whether or not he would be in good enough shape for me to

leave him alone with her. Then I would have household help from someone that

he likes, we know and trust, is reliable, etc, etc.

In a large metropolitan area like New York, Imelda, it seems that there must

be some agencies that can provide the dual service that you want. We had one

here, and they paid their personnel on a scale depending on whether they

performed some household tasks in addition to strictly caring for the

patient. There may be that minimum number of hours. Who will pay? You are

taking the reins, are you not? Wil won't like it, but maybe in some of his

more lucid moments you can get across to him the importance of you getting

out without worrying about him. Maybe play on his professional history. I

know for me that whenever I'd leave Bob for more than the hour I dared, the

stress was horrid. (OK, Mai-Liis, I hear you snickering. You've won! :-) )

Anyway, just some thoughts on what is working here.

Cheryl

[Guest guest]

In a message dated 7/13/02 5:55:55 AM Central Daylight Time,

imelda4@... writes:

> I like the idea of someone who would do double duty. Maybe even if just for

> a couple of hours a week.

I'm almost " home " on this one. About a year ago I recalled the cleaning lady

that used to come while I was working. She cleaned again, but my real need

was to have someone here with Bob while I went out for awhile. My only

respite. I increased her time to 5 hrs biweekly, allowing time for her to

prepare him some lunch or whatever. Not enough for me, but better than

nothing. At that time he refused to consider having a " companion " and made

my life miserable whenever I mentioned it.

When things deteriorated last winter I finally called a sitter who did just

that. She sat and watched TV and couldn't remember to press the Start button

on the microwave when Bob finished his lunch so he could have his hot coffee.

Sitters here come in 4 hr blocks minimum (can make it 5-6-+). Granted, she

is CNA, but. . . For an extra $20 I can have my whole house cleaned!

I have approached Gwen about attending training so she would know how to help

Bob if he fell, walk safely with him when he's wobbly, etc. I think that

once her girls are back in school in August we can find her an opportunity to

learn the things I would want her to know so that I wouldn't have to wonder

prior to each visit whether or not he would be in good enough shape for me to

leave him alone with her. Then I would have household help from someone that

he likes, we know and trust, is reliable, etc, etc.

In a large metropolitan area like New York, Imelda, it seems that there must

be some agencies that can provide the dual service that you want. We had one

here, and they paid their personnel on a scale depending on whether they

performed some household tasks in addition to strictly caring for the

patient. There may be that minimum number of hours. Who will pay? You are

taking the reins, are you not? Wil won't like it, but maybe in some of his

more lucid moments you can get across to him the importance of you getting

out without worrying about him. Maybe play on his professional history. I

know for me that whenever I'd leave Bob for more than the hour I dared, the

stress was horrid. (OK, Mai-Liis, I hear you snickering. You've won! :-) )

Anyway, just some thoughts on what is working here.

Cheryl