Joined: Fri Aug 11, 2006 1:46 pm
Location: SF Bay Area (Northern CA)
Advice for Adult Children (Parents should forward this on)
This post is for all parents with neurodegenerative disorders who have adult children (except it sounds like step-children might need to be excluded as a general rule), and to all adult children who have parents with neurodegenerative disorders.
Marilyn Morris is a member of one of the MSA*-related Yahoo!Groups. She wrote a letter in 2000 that she gave to someone who was an adult and had a parent with a neurodegenerative disorder. She added a bit of additional info tonight, and re-posted this letter for a new member of that Yahoo!Group. I think this gives good advice for how adult children should behave, and I encourage all parents to give this to their adult children to reflect on. Here's her letter:
Posted by: Marilyn Morris
To: ShyDrager Yahoo!Group
I do not know how close/far away you are from your folks, but from
the stand point of a wife of a MSA sufferer who has adult children, I
will share a few ideas.
My husband is 68, I am 61 (2000). I was diagnosed as diabetic in 1995
and had two heart attacks and heart surgery in 1999. My husband was
diagnosed with PD in 1997 and MSA in 1998, but had some of the
symptoms for 15 or more years. No one tied all of the "stuff"
together until 1997-98. I will be happy to share other details, if it
would be helpful to you.
Later, I was diagnosed with severe lung problems (Pulmonary fibrosis/
pulmonary hypertension/pulmonary occlusion disease. I am not sure that
we really have an accurate diagnosis even today. ) which we now know
caused some of my lack of energy, but we knew nothing at the
time of my husband's illness.
What can you do to help now and in the future:
1. Go visit your parents now. You make your own assessment. Stay long
enough to see your patient in action. Don't just chit chat and leave,
but spend time with both of them(patient and care giver). We find it
is hard to say to our sons, "We need...." We worry that our sons will
think that we are over reacting to my husband's symptoms. We are so
grateful when they are here to listen and help.
2. I'm not sure which one of your parents needs you worse. Your
patient will definitely need your support because of her illness, but
your patient's care giver will also need you. He is also losing a lot
3. Go with your parents to the doctor. Hear what the doctor says. We
have found that sometimes, we (my husband and I) leave the doctor and
wonder, "What did they really say?" Sometimes we would have two
different versions of the same info.
4. No matter how much you and your siblings have visited in the past,
go more often now. Take your family, especially the children.
5. My husband and I always worked outside the home and both worked
together at home. I am finding that even though both of us are
retired, but I have most all of the activities to complete. There is
not enough energy. It is not that I am unwilling, but there is not
enough stamia to keep every thing going. That's where your Dad/
caregiver will need your help.
6. Don't ask your parents what they want you to do. You think of
things that you know needs to be done and do them without your parents
having to ask. You were raised in that family. You know what they
would like. Maybe cook some food (your mom/dad's favorites), clean a
bathroom, rake the leaves, sort through a closet, or write notes/thank
you to friends.
Added in 2008
7. Give your mom, the caregiver a break. Give your dad/patient a break
from the constant interaction with his wonderful wife who may be more
afraid than he.
8. There are times when you will want to take your spouse and children
to visit. Grandchildren bring great joy to every grandparent. There
may well be other times when you need to visit alone, so that you can
work to help and truly provide needed support to either/both parent(s).
If this info helps just one person or a family, I will feel that my
time and energy has been well spent.
Marilyn Morris in TN
in memory of
Charles "Speedy" Morris, the joy of my life
*MSA has no dementia but the autonomic dysfunction is far worse than what appears in LBD. It is, like LBD, an atypical parkinsonism disorder.