> I am writing to see if people with TM have advice
> for family members on the kinds of support that they most appreciate and
> need.
Hello, Gary, and welcome,
We're glad you and Bonnie have found us, though sorry you both have to deal
with TM! As you have discovered, it does affect the whole family. I don't know
of a support group for supporters, but there are several care-givers and
family members on the list here. Someone also mentioned the possibility of a
local support group for MS -- MS is the closest thing to TM, so that might be
helpful.
I'm trying to ponder your question above about what kind of support I like
from my family members. My own husband has been great; in the beginning, he
did most of the around the house stuff as well as grocery shopping etc., that
I couldn't do. But keeping up with all of that plus his job and the kids did
stress him out in smaller ways. We did have general offers of help from others
("If there is anything I can do, let me know..."), and I think we probably
should've taken people up on that. People from church did bring in meals for a
couple of weeks, many people baby-sat our kids, one dear lady came in and
cleaned our bathrooms and did some other housework. One lady even came in and
just spent time with our kids -- brought a puzzle and sat at the table with
them. I thought that was so thoughtful -- they needed that time of quiet and
peacefulness. Over time as my strength and balance and ability to walk
improved, I was ablt to take back on my "regular" tasks.
It may be, and hopefully will be, that Bonnie's fatigue will improve. For me,
3 years now since TM onset, some days I have a lot of stamina and can get lots
done: others days I'm a marshmallow. I don't work outside the home, so I can
"go" when I can and "recuperate" when I need to. That, I guess, is the main
difficulty when someone holds a regular job and HAS to be there. On my
husband's part, he is very understanding if I don't feel up to something or if
the house isn't quite up to par. Really, that bothers me more than it does him
(I'm the only female in the house -- I have three boys -- and sometimes wonder
if I'm the only one who cares how things look! :-)) He also "runs
interference" for me in dealing with others or the "outside world". As you and
Bonnie mentioned, when it is no longer obvious to others that you have
something wrong, it is a blessing in a way, but others can forget that there
are still problems. That's fine; either they just didn't know, or, if they
forgot, well, they are only human. Either way, we just matter-of-factly,
without a chip on the shoulder or getting depressed about it, let people know.
For instance, at a family reunion at a cabin near a lake, some of the family
was going to walk down to the lake from behind the cabin. I still don't handle
uneven ground well, so we just told them that and Jim drove me around on the
paved road. I do fear sometimes that since I appear to walk okay and the
symptoms I most have trouble with are not obvious that some will think I'm
being a hypochondriac or just using my illness as an excuse for not wanting to
do something. But I can't help that, so I try not to dwell on it. I've never
had anyone say or indicate anything like that to me.
Well, I've taken to rambling again, but let me try to summarize what a TMer
might need in the way of support from family members.
1) Understanding and time to listen to how she feels as well as the fears and
trials she wrestles with. Sometimes she may need reassurance (i.e., that the
likelihood of NOT having a recurrence is greater than the likelihood of a
recurrence), sometimes she may just need a listening ear.
2) Understanding that she may not always feel up to outings or activities or
sex. :(
3) Actual physical help. In some cases the rest of the family can pitch in
(our boys were old enough to take on some responsibilities). We did not live
near either of our families, but church folks did help some. Many offered to
help even more, and we should have taken them up on it -- I don't know why the
very things you need help with are the hardest to ask for help with. We paid a
teen-age girl to help with the kids the first few weeks when my husband needed
to get back to work but I was not up to being home alone with them all day. We
talked of hiring a teen-ager to come in and do some things around the house
from time to time, but never did. If you can afford it, maybe a cleaning
service once a week or something might be an option. But don't get frustrated
if everything can't get done. Decide what's priority (usually meals and
laundry -- have to eat and dress!:-)) and get to the rest whenever possible.
4) Handle each other with gentleness and understanding as much as possible,
but be understanding if one or the other of you is a little snappish
occasionally.
5) Encourage her along. There was a time when I probably would've kept myself
pretty isolated. Either just didn't feel like going out, or was just afraid.
You get to know your own home pretty well and can manuever, but going out can
be scary at first. That has gotten better as my condition has improved, but my
husband didn't let me sit home and vegetate when that would have been my
inclination. He didn't scold or push; just encouraged.
6) TAKE CARE OF YOURSELF, TOO. You can't do it all either. You need your rest
and you need time to yourself, too.
I'd like to encourage Bonnie in a couple of things,too. She mentioned in a
post being afraid to do fun things or even a load of laundry in the evening so
she would be able to do her job the next day. Hopefully that will improve, but
she might try just small things along those lines at first, i.e., on the night
you go out for dinner or something, come back home to have time to rest
afterward; on the night she has laundry or a school project to do, just serve
chicken nuggets that can be popped in the oven for 10 minutes for dinner. Some
basic home management books have a lot of good tips. One booked called
something like "Diiner's in the Freezer" talks about how to take one cooking
session and make several meals to freeze. Also....sometimes the things you
think are going to be a problem aren't. I was really dreading a trip to Idaho
thuis last sumer from SC that was going to involve driving for 3 hrs., flying
for several hrs., then driving 4 more hours. Travel is NOT my best thing, and
I just can't tell you how much I was dreading it. But everything went really
well and didn't do me in much at all. You just never know, sometimes, how your
system will react.
Don't worry about guilt feelings. Just do what you can when you can.
And although it is true in a sense that in some ways only other TMers can
understand EXACTLY what you are going through, give others a chance and don't
shut them out and don't just share things only with other TMers.
Enough for now -- hope these ramblings have been of some help. :-)
Barbara H.