Careers and more

[Guest guest]

, Mik and Cheryl,

, your letter could have been written by me. I have been working at home

as an Accountant for 10 years....by choice the first four, and then since 1996

because Joe had his problems. His condition has become more and more demanding.

I have not been emailing because I have been so swamped with trying to find a

new lady [my other one left] and finally, at the urging of my daughter getting

someone for four days a week instead of two. I lucked out and was able to hire

a real professional...who cleans everything and helps with Joe too. However,

since I consider myself his caregiver, and he gets anxious if I am not there

most of the time, and he has had such problems the last two months with just

moving, walking and being alert at all, it has been a very heavy challenge. I

am still trying to close out the books for 2001. Did get the business tax

returns finished for employment and state by the end of January, but have really

muddled through February. I have been depressed and upset almost constantly

with the way Joe is going and instead of enjoying my work as I always have, it

has become yet another pressure to get it done and I know I am not doing the

efficient job I have always been known for. I have talked to his doctor in

Portland almost every week and he has upped his Sinemet,and spread it out during

the day which has helped, but he really wants to see him. We are supposed to

go there next Monday, but my daughter is a little afraid of me taking him alone

in his condition. We got a new light weight wheel chair a week ago [the old one

we have been using is big and heavy and about 15 plus years old], and it works

better for me in the house. It is still 26 pounds for me to put in the car. We

will not be staying with Joe's brother as their house will not work, so have

rented a handicap room at an motel close to their home. His brother helps me

take him to the doctor.

Actually, Joe walked on his own in the house today for only the third time since

the Thanksgiving fall down the stairs at our son's home. However, I just tried

to take him to the bathroom and he could not move into the wheel chair. It

seems to go up and down like that every day and my joints, back, neck, shoulders

and hands are all sore, beat and weary from lifting him. We have resorted to a

men's urinal during the bad times during the day, and an external catheter at

night [this works just great - much better than Depends if he does not pull it

off in his sleep which is then twice the mess and work]. I am trying to work

these things out to my satisfaction. If he is not better by Monday morning, I

will call and put the appointment over for a couple of weeks or so [if I can get

an appointment that soon with the doctor], but I would rather we go and let the

doctor see him.

The doctor now feels Joe has what the researchers are calling Parkinsons Plus

Lewy Bodies. Since he only seems to hallucinate small things [the Lilliputian

effect from the eyes?], and the Parkinsons is giving him the worse time at the

present, he is not following the pure form of Lewy Body Disease. The research

now claims that the pure form of Lewy Body Disease does not usually have the

Parkinsons problems and if they do they do not respond to Sinemet.

Joe's mental condition is the same...he can hold a conversation with me but

still has dementia problems in being really aware of everything around him or

being able to follow through. If I ask him if he remembers the day

we......[whatever], he can usually give me the exact date and year and tell me

all about it - lot of which I have forgotten. I can always reground him that

way if he is unsure about where he is at the moment. He cannot be left alone at

all because I would be afraid he would fall if he did get up.

Well, that is my sad tale of woe with this horrible disease. My daughter calls

me long distance twice a day, and my son emails me all the time and calls me

about once or twice a week. I do unload to them and it sure helps. However,

when my friends call, I tell them a little lightly....but not the real things

because they just do not understand!!!!!!! I am a very up person all the time,

but it sure has gotten to me the last three months! I read all the postings,

but sometimes just feel too depressed to put my two cents in. It seems to me

that my eyes are constantly filled with tears these days over everything!

Thanks for listening!!

Eve Fleming