, Your Mom without your Dad

[Guest guest]

:

This was the hardest part for me. I kept thinking about whether there

was anything else I could have done. Even now, I still think about it. BUT, I

was fortunate that Hospice came for so long, and they could help me get

ready. And staying on this list keeps reminding me that this is a progressive

terminal illness and that we can sometimes keep them breathing a few more

weeks just for us, but that they do go eventually, and that we do not improve

their quality of life by making them stay just for us. I knew ken was ready

to go, he told me so, and I gave him the gift of letting that happen on his

schedule. Your mother will come to see it the same way.

Love, Barbara

[Guest guest]

,

I read your question and it reminded me of my mom when my dad died. He had

lung cancer for about 2 years before he died. She was his caregiver,

patient advocate, nutrition expert and soul mate. I don't mean to make her

sound like a saint she did have some other interesting qualities. But when

it came to my dad she gave it everything she had.

When he died she had a terrible time with the second guessing which I

believe to be a natural but painful process. I think the best you can do is

listen and reassure her that she did everything she could. The loss of a

spouse seems to be significantly harder to deal with than the loss of a

parent. My parents were married 45 years. They obviously like all couple

had good years and bad years. But they hung in there together. My dad had

been retired 10 years so they spent everyday the last 10 years together.

This is my long winded way of saying they were really one entity.

It will be hard for a while because your mom does have to find herself again

plus develop some routine that fills the days. I know the time after the

funeral was the hardest. All the friends and relatives go home and back to

their lives and suddenly you are there alone with this deafening silence. I

talked to my mom allot in those days. Actually I didn't say too much, I was

just there to help her through. I always worried that she would slip into a

clinical depression. This was a problem because this was one area she

didn't want help with. She didn't want anybody messing with her mind. I

guess that is ironic for me given that my mind (or at least the brain that

supports it) is being messed with internally by my own body.

Bottom line is I would expect it to take a while for your mom to adjust. At

times my mom would say things that just weren't logical to me. But there is

a lot of things to process and get through. It gradually gets better to the

point where they can function better. Of course I know I still miss my dad

every day and it has been 10 years. I just know in my heart that that

missing a partner is harder to deal with when it is your spouse.

It looks like I am the one rambling. I would first of all say hang in there

as you adjust to the new situation. And also to be as supportive and

accessible to your mom as you can. I suspect that is already the case. Do

take care.

Mike

Re: Financial Support/Bill

Thanks, Bill. I always appreciate your input.

On the subject of MSA Research, do you have any feel

for which organizations/hospitals, etc., are doing the

most research right now? I assume Vanderbilt has a

large research program. Is that right? What about

Mayo? Where are we in terms of research? Is the main

focus on finding a cause for MSA? I need to talk

further with Dr. Parisi at Mayo and find out what

types of research they do with brain tissue donations.

On a different subject, how long did it take you to

get used to " not " caring for Charlotte? My mother is

really struggling with that right now. Of course, it's

only been a week and a couple of days since my father

passed away. For the past year, she spent her entire

day caring for him. (They never hired outside help).

She doesn't know what to do with herself now.

She is also really struggling with the question, " Is

there anything I could have done to save him? " She

wonders if he would still be here if she had taken him

to the Dr. when he first started feeling bad. Maybe he

had an infection we didn't know about. Also, she

doesn't know CPR and wonders if she had if he would

still be alive. It's a moot point, but I think that

even if she did know CPR he wouldn't have made it. If

he had, I don't think he would have been the same.

This is such a difficult time and we have so many more

questions than we have answers. In the end, it doesn't

really matter much because what happened happened and

we can't change it now. Still, I wish we all had just

one more day with him.

I'm rambling...

Thanks!

--- Werre b.werre@...> wrote:

> ,

>

> You didn't start anything, you just asked a good

> question. I know this is a

> tough time for you and your family, don't let this

> misunderstanding get you

> down. I don't think anyone is really upset.

> Remember we are still family

> here on the list.

>

> I just think some of the newer people don't realize

> the ties between this

> list, Vanderbilt University and the SDS/MSA Support

> Group. That coupled with

> the outbreak of SPAM on the list recently has many a

> little perturbed (the

> SPAM has Pam and me uptight also). I just wanted to

> let newer members know

> that Don is a member of the list and was before I

> came on the list.

> Vanderbilt University started this list (with the

> SDS/MSA Support Group) in

> 1995 and provided the server (actually it still

> works) until July 2000, when

> they moved us here to get more services. Pam and I

> are generally the only

> ones on the old list and refer people here when they

> find that one.

>

> Hugs to you, Bill Werre

>

>

--------------------------------------------------------

>

> M Bruner wrote:

>

> > I think Don was just responding to my email asking

> > about possible organizations to whom my family and

> I

> > could donate the money that was contributed in my

> > father's memory. Sorry if I started something.

> >

> >

>

>

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