about to quit working and nervous about it

[Guest guest]

Last summer the wonderful company I work for created a half-time

professional post for me, and promoted a woman I've mentored to

replace me as Customer Services Manager. They have allowed me to work

from home, with a promise that I will attend meetings in person a

reasonable amount of time. They provided me with a laptop and access

to the corporate intranet and web applications. I manage the

development of the order management system of our enterprise business

system we have been developing the last 3 years. It's a huge

responsibility, and really requires more than half time effort.

However, I just cannot do it anymore. I can tell my husband I need

time on the computer to prepare for a meeting, or that I need to be on

the phone for an hour (despite the requirement to provide attendance

I've been calling in to meetings the last 3 weeks, since doctors have

indicated R cannot be home alone) -- but that doesn't mean he won't

need me during the critical time. I just cannot continue to be pulled

between work and caregiving. Also, I don't think they will tolerate my

continued failure to participate in person much longer.

I've been telling R that I either have to quit, or we will need to

hire HHAs to provide care for the 5 hours I need to be available at

work 4 hours 5 days a week. Naturally, he agrees to neither option --

and why SHOULD I expect agreement from a state of dementia?? Yesterday

I realized I just don't want to go back to work. I know EXACTLY what I

would like to happen. I'd like to remain home and have an HHA attend 1

afternoon/week to provide me some respite.

Here's my dilemma, I will have no income if I quit my job, and no

control over my husband's finances. (1) I have never not had some

income since the age of 11, when I started baby sitting. I was

breadwinner married to my first husband (23 years) as he took one of

the longest travels through graduate school, and finally leaving me 3

years after finally obtaining his first job. When I married R, I

really didn't understand his illness, and agreed to a preniptual

agreement saying we would both remain responsible for our own

expenses. I'm 23 years younger than R, loved my career, have no

children and expected to work for a long time to come.

Shortly after we married in 2000, began to show signs of

dementia. I began grieving for the man I married almost before the

bridal bloom wore off. Don't get me wrong. I love him dearly and want

to care for him.

(2) I think that reluctance to pay bills is part of the way his

illness manifests. Increasingly he will not pay for his own expenses,

eyeglasses, dental services, magazine subscriptions.

Last year, I was hospitalized for 6 days after an auto accident. While

I was in hospital R didn't take his meds, and eventually I had to ask

for a welfare check and he was hospitalized in the pyschiatric ward.

At first, he was in an almost catatonic state, very unresponsive. But

by the time I was sent home for 6 weeks bed rest, he was violent. He

believed he was in a concentration camp and the medical staff were

Nazis. They had sent back the spreadsheet I had an aide take to them

with the timetable for his meds, and instead dispensed them strictly

according to the bottle instructions for hours between dose, and

without regard to which medicines needed to be given together or

separated. Which meant they gave him Comtan separately from the

Carbidopa-Levodopa which I was told never to do.

R is a holocaust survivor; he escaped from the Warsaw ghetto as a

teenager, and found some good people who helped him get false papers.

I felt that I had to get him home ASAP once he began having the Nazi

hallucinations. The psych doctor (she diagnosed LBD, but doesn't seem

to have treated it properly) said I'd have to have 24 X 7 HHA care

before she'd release him. My brothers helped me for 2 weeks

until I could arrange RTC care.

The long and short of it is, that when we both were recovered enough

to end the care, R refused to pay the care agencies. I used the last

of my savings to pay them. Since then, I have been living month to

month on my reduced salary, and paying for groceries and sundries that

R does not pay.

This needs to change of course, and I don't know how to manage this

change in the face of his LBD. I can just quit preemptively and let

things take their course. I just don't know how to find the help to

manage it.

I have made contact with Geri Hall, who has just moved away from here.

She says I may consult her by telephone, or work with one of 2 local

nurses she recommends. I am about to send her a copy of this information.

Does anyone else have experience with a LO who doesn't want to pay

bills? any ideas?

Kathy

60 year old wife of 83 Year old with Parkinsonism with LBD