Re: Noreen. Best wishes to you!

March 23, 2002

Noreen,

This message is too long. I apologize before you begin.

I like the others are very sorry that you must be with us on this list,

but I can tell you that I have learned much from this group. There are many

people here with different experiences and different opinions. I am a night

person, so I have spent many a night reading these messages. In many cases,

I have been able to see that something going on in our life was similar to

events in the lives of others on this list and be relieved to just know that

others are having similar experiences. My husband's symptoms have advanced

fairly rapidly following his diagnosis, in 1998. Infact, the only way we

can move him now is with a lift attached to the rafters of our home and a

power wheel chair. We know that he had many of the symptoms for years prior

to that diagnosis, though.

We certainly are seeing that no two people are the same. I am sending

you info about our family, but do not take us as the gospel. Who knows

whether we are average or not.

My husband is the MSA patient and I am the caregiver (Well, sometimes I

wonder, if that is really true.). I am responding, because I see your need

and that of your folks from a different perspective than you might. I hope

my thoughts will be of help to you. I am 63 and my husband is to be 70 in

April. Our sons are between 36-41 who are very caring, but also have very

demanding jobs, plus wonderful families. In addition (but thank goodness)

they want to spend lots of time with their own children/wives. We want them

to do so.

So we can see the strong " PULL " of emotions, physical needs, guidance

and so on that comes from the parents who were 'smacked in the face with

this illness' and all of the circumstances that go with it, plus the needs

of our sons with growing, but young families. Our sons will do anything for

us, but we do hate to ask them. I will say that in past few months, I am

less hesitant to ask.

I will include some ideas that I have written previously for others. I

hope they will help you. My husband and I may be a little more/less needy

that other families, because I had major coronary problems within the year

following my husband's diagnosis (two heart attacks, angioplasty and finally

four bypasses.Now congestive heart failure) I do not think that my health

problems had anything to do with my husband's diagnosis. My problems are

genetically oriented, but my weakened health has probably made me some more

dependent upon my children than others may be.

I would suggest to you. Don't leave it to your parent to tell you

anything. He/she may want to but be unable emotionally/intellectually to

tell/ask.

1. This is the most important gift that you can ever give your parents, but

it takes time and commitment. Don't just say, " I love you " . Show them your

love. You may have to make major changes is your lives today, but remember

they made major changes in their lives when you needed them as an infant.

That may be exactly what your ill parent has become, an infant.

2. No matter where you live or where they live, go to your mom and dad.

Stay for a period of time. This trip leave your children at home. Neither

you nor your parents need the distraction of children. Don't just drop in

for an hour. Stay long enough to see what really is going on. Take things

in your own hands, but remember they have a routine going. It will take

time to change old habits. Some of those very things that you disliked the

most in your home when you were a child may be the very things that they

want to hold on to now. Remember it is their home, it is their life.

3. Make it a point to go with your parents to the doctor. It always helps

to have more than one set of ears. Doctor's offices can be very stressful.

Even though my husband and I are both of sound mind (we think), we sometimes

hear two different things when we are at the doctor's. This happens for

either one or both of us. If it is not possible for you to actually go with

them, get written permission from your parents for the doctor to meet with

you to discuss your parent's condition.

4. Make arrangements for you or your spouse to help your healthy parent

care for your ill parent on a regular basis. If that is impossible find

someone to help on a regular basis, whether they think they want the help or

not. Find someone to clean house, cook a few meals, sit while your well

parent runs errands, etc. Be sure it is going to happen week end and week

out.

5. The most important thing your healthy parent needs is your support and

love. He is already grieving for the loss of his/her ill spouse (as she has

known him), the loss of his own life (as he knew it), and many other aspects

of their life together. Your healthy parent may well be in a psychological

shock without being able to recognize it. She may need some medical care

herself.

6. Put all of your energies to loving your parents and showing that love to

them in actions and not just words. Do all you can to make their life

comfortable.

7. A young friend who was my employee prior to my retirement is dealing

with her own parents. The mother has Parkinsons. The doctor has said to the

dad that he must get away. His prescription for the spouse is to have

outside help at least 8 hours a day, one weekend a month, and one week every

two months. I¹m not sure that either my husband or I would ever be willing

to this much time away from each other, but I am seeing the need for help.

My thoughts come from the fact that the members of this list are mostly

caretakers and patients. In most cases, we are not medical professionals.

We all care for each other, but we also see that the illness is different in

each case.

I will be happy to discuss other issues if you like. Please know that I

care for you and your parents. My thoughts and prayers are with all of our

families each day. If you live anywhere close, I would be happy to meet

with you or your parents.

Best wishes to you on your journey.

Marilyn in TN

March 24, 2002

Noreen:

I believe I missed your message that stimulated this wonderful reply by

Marilyn in TN. I can vouch for everything she said based on my own

experience which is quite similar to Marilyn's. The only difference is

that I could not have expressed as well as she did.

God speed in your journey.

Message: 17

Date: Sat, 23 Mar 2002 18:12:04 -0600

Subject: Re: Noreen. Best wishes to you!