Hello, everyone!

I've been enjoying the info, solace, laughs etc on this list for a couple of weeks now but have neglected to introduce myself - partly because it will be a longish one -- but here goes!

I am one of 4 adult sibs; I live in Kansas, Marge is in Massachusetts, Steve in New Hampshire, John in North Carolina.  "Home" was New Jersey.

Our mom, Louise (75/5?) had relatively little trouble with her PD until two years ago, when a series of unmitigated disasters started a sudden and rapid decline for her.  Dad had hip replacement surgery.  It was botched.  The fix-up was botched.  The third time was a charm, but by then he was in pretty bad shape.  He was in various hospitals and one (YUCK) rehab place from November 94 thru May 95, when he spent a couple of weeks at home, another couple in yet another hospital, and died.  This all would have been a nightmare for Mom under any circumstances, but all the stress worsened her PD and made her pretty depressed and anxious.  We four "kids" and my wonderful husband took turns flying in to help her/them out.  During that period, Mom went from complete independence to needing a twice weekly homemaker to needing round-the-clock companionship to needing more than that.  The options seemed to be moving into a nursing home in NJ, near her extensive group of very close but !
mostly elderly friends, or moving
into a nursing home near one of us.  Since my mother-in-law was already in a nursing home out here that we were reasonably satisfied with, and since my local extended family has the numbers and the schedule flexibility to give her lots of TLC, Mom decided to move out here.

So, really, the nursing home staff would constitute Mom's primary caregiver and my husband Dave and I are pretty much the co-secondaries.  We run interference with the N.H. staff and the various doctors:  an internist for primary care because we don't care for the in-house guy, a neurologist - Dr Raj Pahwa, PD specialist at the University of Kansas & his terrific nurses, and a psychiatrist.  There had been a surgeon and an oncologist and a radiation oncologist as well, because about a year ago there was this malignant lump which was removed and followed by a tamoxifen regimen which we hope is slowing the growth of whatever is still in there sufficiently that Mom outlives any further occurrence.  I have power of attorney (and durable power of attorney for health care decisions) and handle bills etc which was quite a job while Dad's were still coming in but not too burdensome now.  And we do things like keeping her little fridge stocked with snacks,  running errands, etc.  My !
sibs fly in periodically, a treat
for Mom and for us -- no offense, but Dave and I generally leave town for a few days when that happens!  (Did I mention our six children, 2 + 2 on -the-way grandchildren, and a changing parade of one daughter's foster children, never fewer than 4 in number?  Or my busy life as a community college math instructor?)

The most important facet of our caregiving is, I think, emotional, and it's by far the hardest.  A friend recently told me she thought that old age brings out the worst in one's personality, and I'd have to agree.  Mom has become very negative, depressed and demanding/manipulative.  Yes, she has suffered a host of losses in a short time.  Yes, she has a progressive condition.   Yes, depression is a matter of brain chemicals.  Intellectually, I know all of that!  But it's so discouraging to say "My, your voice is strong today!" and get a response like "Well, maybe, but it won't last."   Or to suggest watching TV to help get over a panic attack and be told that it won't help, nothing is enjoyable any more.  Or to be repeatedly criticized for my weight (chunky; middle-age spread).  Oh, and the paranoia (sp?) got to be bad.  Well, enough belly-aching.  Here's where we stand:

Mom just spent a month in the hospital, undergoing ElectroConvulsiveTherapy.  This is a mild version of the old shock treatments.  They were given MWF for 4 weeks.  Mom was in the Mental Health Unit of the hospital, where she was under the care of the same psychiatrist she had been seeing at the nursing home and where she was expected to participate in group therapy etc.  It appears at this point that the ECT has been a big help "physically", since Mom has got her appetite back and gained about 5 pounds (all the way up to 93!), is much stronger and able to use her walker or even get around independently sometimes, as has full use of her voice much of the time.  The staff at the hospital thought her depression etc had improved as well.  It's hard for me to tell, because she kind of feels free to dump on me and I rarely see her at her best.  The transition, just yesterday, from hospital back to nursing home was kinda tough . . . we'll see.

About the ECT:  it was suggested by Dr Pahwa for the PD, but had to be ordered by the psychiatrist for the major depression, I think something to do with Medicare not paying if it's done for PD.  It's apparently becoming the treatment of choice for elderly patients, esp since there are no drug interactions etc to worry about.  We anticipate Mom's having to go back for a "tune-up" of a couple of days duration every 6 months or so.  I've been searching for info on this whole issue and have only found one reference to treating elderly depressed folks with ECT, and it suggested the need for Clozaril, I think it was, to be continued even after a series of treatments.

It's not as if I didn't warn y'all that this would be long!  Thanks for "listening", and thanks for all the companionship.

Mary
cg, sort of, for Louise (75/5?)