Caregivers

[Guest guest]

Hi, Laurel:

I am primary caregiver for my spouse, Bettie Jo, who was finally

diagnosed with PLS after about eight years of moving from doctor to

doctor and test to test. Because Bettie Jo's symptoms were very

slight at first, and as they increased she was VERY successful in

hiding them from friends, family, co-workers, and even her

neurologist. On the other hand, she could not hide them from me.

She is 54, I turned 55 today. We celebrated our 31st anniversary over

the weekend, the 29th to be exact. While our life together has been

long, our interests were quite different, and each of us had our own

areas of involvement both at home and in the community, and still do

for that matter. The arrangement worked well, for us.

As the PLS progressed, I began to notice more difficulties in

everyday activities and hobbies. I did not pay a great deal of attention,

more or less just let things ride. About four years ago, I realized that

what ever the problem was, it was progressive, and it did not seem to

be getting any better. During a personal appointment with the

neurologist, I alerted him to the fact that while he had not noticed a

decline, I had. I urged him to be more observant at the next

appointment. I asked Bettie Jo for permission to attend that next

appointment. She allowed me to then become involved directly with

her problem which was later identified as PLS.

That was a bunch of words, but the point is that the revelation did not

happen overnight. I had seen things going on for years and years, but

chose to ignore them. I seldom helped with household duties, and

generally let things ride on their own, denial in my own way. You

were just recently provided with a diagnosis of PLS, in early

September if my records are complete. Your husband will need time

to adjust to the reality of the situation and find his own way of dealing

with it. I can easily say that anger is an emotion that is hard to

control. That anger, while sometimes directed at Bettie Jo, is a

product of the frustration of not being able to make this stuff go

away. When I catch myself, I mentally give myself a slap in the face,

not as punishment, but rather to regain my attention to the present

situation, and to direct my efforts in a more productive manner.

As to our everyday duties, I will stand back and let Bettie Jo do as

much as she is able to do. I will do some tasks that I see need to be

done, or that she is not able to accomplish (I do the laundry because

the washer and dryer are in the basement and she is not able to

negotiate the steps). We have made accommodations that help

accomplish many tasks. We found a light-weight battery powered

vacuum and that new envro-steamer. Bettie Jo can sit in her walker

and take care of those tasks. She loads the dishwasher, and

occasionally I will unload it. We have also decided that some things

get to slide a little, but unlike , we have no pet peeves about

making beds, and sometimes things do get a little dirty before we get

to them. All in all, we get done what needs to get done, sometimes

with help of others.

does have the right track, however, on helping your husband

better understand PLS, your needs AND his needs. Recently Dr.

Prahl asked me why I had become so involved in PLS. That was, and

is, a hard question. Mainly, I have become involved because; 1) that is

the way that I am -- I tend to participate in just a few interests, but

those I give my whole hearted attention; 2) I have always had a deep

interest in science and medicine, including a BS degree in Biology; 3)

I love and cherish Bettie Jo and entered into a bond to care for her in

sickness and health - which I am sure she would do the same if our

situations were reversed; and 4) if there is anything, anywhere that

will help her or anyone else who presently has PLS or will have the

disease in the future, I want to find it. Try to help your husband learn,

through which he may be better able to understand and accept, and

then to assist.

When the PLS diagnosis came, we, too, received little information

from our doctors. I can't leave something like than alone, so I began

to search the web, and found Dr Levy. Through him I located

Dr. Prahl. I visited the NORD website and tried to find anything I

could on PLS. There was not much, except for Dr. Levy and his PLS

Newsletter. This was before the PLS website and PLSPals. I called

Dr. Prahl, spent hours in conversation, and then reported my findings

to Bettie Jo. However, she was not yet ready to take that step. I knew

that I could do little good pushing the question, so I made sure that

the information as ready when she was ready for it. In that manner,

we have decided to tackle this problem together, with each having

specific assignments -- I encourage, she perseveres.

We have also be in a twelve week group therapy program, which has

helped a little. Bettie Jo had been a member of the group before, but

I decided to attend for this session. Just doing this together has been

a help, because we spend time with each other away from home --

good for both of us.

There are special organizations which may be of assistance. I have

never seen them mentioned in PLSPals or PLSFRIENDS, and I have

not personally established contact, but have copies of their brochures,

and am prepared to use them if I feel the need. They are: The

National Family Caregivers Association, 9621 East Bexhill Drive,

Kinsington, land 20895-3104. Telephone: 1.800.365-3650,

(www.nfcacares.org) and Well Spouse Foundation, 610 Lexington

Avenue, Suite 814, New York, NY 10022-6005. Telephone:

1.. Both provide support to caregivers.

This became much longer than I would have liked, but I hope that it is

of some assistance. In any event, know well that a primary reason for

our community is mutual support. Call on us.

Don