>A friend of mine is concerned about how his wife, who has PD, will manage if
>something happens to him.
>
>If you have any thoughts or experiences that might help I will be happy to
>forward them to him.
I think this is a very common concern for every caregiver.
With my Mother, we:
- documented her routine. A single A4 sheet of paper with drug times,
simple "if this, then do this", don't do this, etc. Generally used
for respite care nurses but useful "in case of the worst"
- the primary caregiver *must* take breaks
- because otherwise you will make yourself ill!
- it gives other people experience of caring for the person
- (this is going to sound a bit over the top, but when you have
someone who is serverly disabled and can't communicate, you have to
think about it) - if you are travelling, try not to have *all* the
people who could care for the person in the same car. Also, try and
have little boxes of drugs which you can grab in an emergency - I
always had a day's supply in my car, for example.
Special circumstances for my Mum:
- her speech was very bad
- treated in the right way, she got the best of her situation. Treated
in the wrong (but well meaning) way, life wasn't fun at all.
Do not underestimate the amount of learning that goes on with Parkinson's.
We are all "experts" in our/our PWP's condition, and that learning is and
essential
part of quality of life. How to pick someone up, what to eat, what to watch
on TV, what various signals mean, etc.
There are really two problems here:
- what happens in the short term if the caregiver is incapacitated. The
PWP is going to be deeply stressed (because their loved one is
incapacitated) and also cared by people who don't know what to do.
Steps detailed above can help here.
- what happens long term. Here you are into Social Services, family,
etc. Not much you can do here except vote well, pay your insurance,
and have a loving, supportive family (if you are lucky enough to
have one - we were)
Hope that helps,
Simon
--------- My opinions are my own, NIP's opinions are theirs ----------
Simon J. Coles Email: [log in to unmask]
New Information Paradigms Work Phone: +44 1344 778783
http://www.nipltd.com/ http://james.parkinsons.org.uk/
=============== Life is too precious to take seriously ===============
