Dennis,

Thanks for the thoughtful and caring post.

When I was in the hospital several weeks ago I met a woman about my age
who had had PD for 20 years.  I wanted to talk with her about how PD had
affected the relationship between my wife and myself and understand how
she and her husband had coped.  I tried to lead into the discussion with
"Y' know-  sometimes I think PD is harder on our spouses than even the
PWP" (Which I firmly believe) She replied that she had never thought
about it and then related a story about his insensitivity prior to her
developing PD. Yet with minimal communication they survived together 25
years.  I guess some people can do it without communication.  I don't
know how they manage it but I suspect that it involves substantially
lowered expectations from the relationship.

For me it is crucial to keep lines of communication open and allow
ourselves to discuss and sometimes argue about feelings we would rather
not talk about.  Most of us PWP expect our caregivers to feel sympathy
for the discomfort and difficulty we experience but it is  important for
we PWP to to put ourselves  in our caregivers shoes. How are they
responding to the constantly changing and increasing needs we have?  How
have the roles we play in the relationship evolved and how do each of us
adapt to them?  For instance since I have surrendered much of my "manly"
driving duties for the most part to my wife I have become an
insufferable back seat driver.  She had never enjoyed driving and in
fact was somewhat phobic about it. Nonetheless she had only had 1
accident in the 27 years we have been married.  When she shows the
slightest bit of hesitation I am there to "help" which is a "fine
confidence- builder" for someone not  not entirely sure of her driving.
Neither of us asked for this change but we both have to deal with it.

  In addition she is physically short and the household chores that I
used to do largely fall to her.  Also, she needs to do things for me.

It is a much bigger deal to go out somewhere together.  Because she
cares and worries about me she always feels "on call" for me and like a
tired physician who has been on call for an extended period, often
resents it and gets short when I make a simple, non-urgent request or
statement.

I hope that we PWP on the list can exchange ways that we care for our
caregiver/partners and increase our awareness of their needs as Dennis
has done.


When I was in active practice I would often advise caregivers to take
time for themselves.  Often they would respond that they felt guilty
about leaving their "patient".  I would explain to them that they would
be a better caregiver if they took time to recharge.  They would be less
irritable and then do a better job.

What about the "non-couple" part of our partners lives?  How does our PD
interfere with that?  We as PWP need to pay every bit as much attention
to the needs of our caregivers as they do to us.  Dennis addresses the
problem that I mentioned in a previous post giving a good solution.


Charlie




Dennis Greene wrote:
>
> Sadly being a sensitive, informed carer, is not of itself, proof
> against the feelings of rejection that many carers must feel.
> The knowledge that a PWP has body language difficulties
> does not make those difficulties either stop or easy to live
> with.  It must be not unlike trying to hold a conversation
> with someone with a bad stutter.  We all know that the
> correct thing to do is to let the stutterer speak for themselves
> but the temptation to 'finish' words is so strong that it
> requires an act of will not to.  This can produce feelings
> of frustration, especially if you have other things to do. The
> range of responses open to the listener are limited. They can
> remain calm and give the speaker time (a response available
> only to those of a certain disposition or those who have taken
> the trouble to learn how, also a response which uses a lot of
> energy), they can ignore the feelings of the stutterer and finish
> their words for them, or they can avoid the situation by avoiding
> the stutterer unless communication is essential.
>
> There is a direct analogy with the 'body language' stutter of PD.
> As my PD has progressed I have watched as friends choose
> between the calm and avoidance options. With friends the
> 'jumping in' option seems to be a transitional phase leading to
> one or other of the others. Not so with the carers I have observed.
> Many seem to choose the 'jumping in' option, which leads to
> a constant flow of low level bickering.  Perhaps this is because for
> carers the avoidance option is not simply a matter of lossing touch
> with someone. Sadly some do choose avoidance.
>
> Some of us are lucky enough to have carers who have opted
> to remain calm and accepting. Those of us in that situation would
> do well to remember that for many of them remaining calm is not
> easy, and is in fact an act of will .  We PWP need to acknowledge
> the frustations inherent in our loved one's situation and reciprocate
> with acts of will of our own.  If our body language no longer auto-
> maticaly transmits our feelings we need to replace the automatic
> with the deliberate. Just as many of us find it easier to walk by
> 'marching'
> ourselves with a silent left - right - left - right, we need to
> devolop
> some means of reminding ourselves to let our carers know that we
> care for them too.
>
> For myself, I intend to start by printing this out and giving it to my
> wife.
> I also resolve that if conversing during an 'off' period, I will
> conciously
> turn my body towards her and make deliberate eye contact. I will find
> ways to remind myself to initiate touching and hugging when 'off'
> and,
> most important of all,  I will put letting her know that I love her at
> the
> top
> of my List Of Things To Do When 'On'.
>
> Dennis.
>
> ++++++++++++++++++++
> Dennis Greene 47/10
> [log in to unmask]
> http://members.networx.net.au/~dennisg/
> ++++++++++++++++++++

--

CHARLES T. MEYER, M.D.
Middleton, WI
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