Dear CARE friends-- or should I say, "family" ?
Having vented last night on PIEN, where I was almost ready to throw in the towel, I have been thinking today about expectations.
In part this is about expectations of something like an internet list, and in the case of PIEN our ideas, hopes, and fears for it differ widely. When, as in recent weeks, our expectations--whatever they may be---aren't met, we become hurt, angry, frustrated---and the tendency is to lash out at those who act in ways that provoke those responses from us. (It is a tenet of counseling that others don't "make" you feel something--the feeling is your choice of a response to them).
For the most part, however, my thoughts were about the expectations we have as CGs in our relationships with those we care for--in both senses of the word. I cried last night, because I had to face the reality that Christmas for Peter and me would never again be the same. I expect a few such tears were shed by others of you as well.
Letting go of the past, and learning to accept the present realities of our relationships is so hard---but also so necessary, if we are not to be constantly hurt, angry, and frustrated.......emotions which do no good for us or for the ones we love. The days are filled with tiny and not-so-tiny irritations, disappointments, and challenges, piling on each other in a great big "stress-layer-cake", but when we realize that the "good old days" just may really be in the past, it brings us up short. Giving up the big things is less hard than losing all the small daily connections that have been the glue holding the relationship together. We have to learn to look for the places where we can see that the person we love is still there, still needing and reaching out to us, in spite of angry words at times, or of behavior that makes what we must do as CGs even harder.
It is up to us, in the end, to adjust our expectations to the reality of the day, and keep adjusting as the days go on and the realities change. Knowing we must do this is perhaps the first step to accepting the way things are---and will help us empathize with our PWPs who are having to make these same adjustments on their side , and to cope with limits we can only imagine.
**********
Though we are not at your stage in the progression I have most all of
the feelings that you mentioned. But I go even further
with the depth of my feelings., or at least those that you shared with
us. I occasionally get really sorry for myself
and say what else is there in this life for ME? This last 2+ months has
been awful for both of us. There was the staph and celulitus, then the
TIA and carotid surgery.
Now we are fighting ever on going infection in my husband's toe. There has
been discussion as to his loosing the toe
Finally it is now looking like it may be on the road to recovery. He has
remained
fairly calm through all this. He did admit
to having fears about amputation of that toe.
Now it is Christmas. Oh boy. About 6 wks ago the kids informed us that
they and of course the latest grandchild(8mo) were going to California for Christmas. That
bothered me cause it is his first Christmas. However I told myself
this was okay. My 4 kids, mates and all the grands would be together for
Christmas
for the first time since 91. Then as it got closer for their departure I
began to allow
tears to flow. I have shed more tears this last week than I've done for
a very long time.
Today started out to be a long miserable day. Then I
read your post.
I decided I'd best make the most of
the fact that mentally my husband is in pretty good shape. Who am I to feel
so sorry for myself. My husband's favorite line came to mind. "It could be
worse." This is usually his response when anyone asks him how he's doing..
My prayers, my tears and my caring are with you and your husband. I too
have been real disheartened by a lot of
the recent posts on PIEN.
It breaks my heart, to know the wheelchair will be my husband's life (until worse),
but he is so patient. Your posts remind me that it could indeed be worse
Underneath are the Everlasting Arms.
My husband and I spent Christmas Day in hospital. The 'progress' of his PD has been
very surprising. Perhaps that's the wrong word, dramatic and sad might be
better. In the summer, as I said in a previous post, he had a real PD break
and was doing all the things he previously loved to do, gardening, masses of
heavy wood-working, and lots of short walks. He re-vamped his work shop with
loads of new tools and we booked a Christmas cruise. That was last May. In
October he started to go downhill, spent a few days in hospital, came out
walking, and we hoped for more improvements, but since then the downward
spiral has been frightful.
Our doctor says he is now in 'last stage PD' which is a sentence so doom-
ridden that I hardly know how to cope. He was taken into hospital by
ambulance as he couldn't move at all and is now kept reasonably tranquil with
drugs in addition to the PD ones. He says he has made his peace with God and
wants to go. The care he's receiving is wonderful, but the very cruel cruel
thing about the British National Health Service is that at our hour of
greatest need we are thrown out !! Old people with long term nursing needs
can be kept in hospitals for about three or four weeks under the NHS but then
are told that a nursing home must be found. This necessitates long
complicated financial forms to be filled in and if you have a reasonable
amount of savings, nothing is forthcoming. Nursing home fees are about £400
per week.
My husband needs round-the-clock care and two strong nurses to lift him. He has to
be fed and all other needs cared for.
Has anyone else experienced this very up-and-down course of the disease.? He
was out in the garden digging out a bank with a heavy pick-axe and remaking a
flight of concrete and stone steps in September, and totally immobile and
helpless by early December?
The speed of his descent is shocking and frightful to come to terms with.
So sorry to send a dismal letter at Christmas time. Perhaps I should delete
it? But this group is for this very sort of thing isn't it?
If caregivers feel like doing a bit of wallowing in self pity, what better
time than the holidays. It does help to remember the good old days of the
past and to try to take pleasure in smaller things. Our true friends have
been great to try to cheer us in any way they can and for that I'm very
grateful.
My husband spent a total of 4 weeks in a psychiatric hospital. He was angry and
violent and finally went down into a fetal position, not eating nor taking
meds. I was told he had 6 months to live. Finally he went under the care of
a marvelous psychiatrist whose specialty is elderly dementia.
He is now living in a wonderful assisted living facility, in the alz wing but
seems happy and though confused, his funny warm self in many ways.
I guess my advice to you is to try to find a doctor, either psychiatrist or
neurologist whose specialty is such that he know the psychotropic (sp.?)
drugs and how they react with the pd meds. Just sounds as though your husband has gone
down so fast that something else may be at work here. Possibly another
illness, possibly a bad reaction to the current meds.
Having just gone through much the same thing and as many other care friends
have, my heart aches for you. Take care of yourself.
SNIPPED
> I occasionally get really sorry for myself
SNIPPED
> Then as it got closer for their departure I began to allow
SNIPPED
Gosh, what a perfect example of the PD roller coaster we all live
on. Is there one of us CGs who hasn't for just a moment, felt self pity?
felt abandoned? felt scared and discouraged? You
"decided to make the best "of the good you could find in your situation,
and that's hard but important to do. Adjusting expectations to fit
reality---is there a better way, after all, if the reality won't change?
I'll put you on the list to get the first "Handy-Dandy Expectation
Adjuster" my factory produces---but don't hold your breath!
P.S.
(Perhaps in addition to my "invention" of the "Patience Pill", I'll also
try to concoct an "Expectation Adjuster"---bet there'd be quite a market
for them !
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Boy you hit a nerve with your post.
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You said it for me also.
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Wonderful words! Thank you everyone for this group.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
You're so right about how our expectations, particularly about
holidays have changed so much. I've found cutting my card list to really be
helpful. The people whose cards are full of family triumphs and trips are no
longer answered, in fact usually left unopened. Most of these people have
barely or never acknowledged what has been going on in our lives and how
selfish can that be.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
When your first note came, we were in the midst of our own crisis
but it has been on my mind to answer you.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Taken in part from a prior message:
>and say what else is there in this life for ME.? This last 2+ months has
>been awful for both of us.
>tears to flow. I have shed more tears this last week than I've done for
>a very long time. Today started out to be a long miserable day. Then I
>read your post.
>I decided I'd best make the most of
>the fact that mentally my husband is in pretty good shape. Who am I to feel
>so sorry for myself. My husdband's favorite line came to mind. "It could be
>worse"
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