Googling, I stumbled upon “a collection of essays about the well
spouse experience and what I believe society should do about it” by Marion Cohen.
“Cruel and Unusual” (2005)
is an unpublished book she “decided to
make freely available”. You need only Adobe Reader, or other application
capable of reading PDF files.
Not
only does it provide insight to home caregiving but transition to the care
facility era over her 26 years as a Multiple Sclerosis caregiver.
Time
is everything for a caregiver / carer, and at 89 pages, “Cruel and Unusual”
does not take a ‘War and Peace’ commitment of time to read yet on the other
hand raises enough questions, shared experiences and food for thought about
caregiving in our society to fill volumes.
Some
chapter headings (in her own words):
WHAT
CAREGIVERS DO (a kind of Care Giving 101, especially for those who don’t
already know)
SUGAR-COATERS
AND OTHER NON-SOLUTIONS (such as referring to the patient as “the loved one”)
NOT
EVEN VOLUNTEERS (the plight and feelings of family members of nursing home
residents)
THE
SEX WORKSHOP (how some well spouses are seeking love and life elsewhere -- the
joys and limitations of that)
…
also it’s an intriguing peak inside the early years of the Well Spouse
Association.
For
veteran long term MS caregivers it may read like a visiting preacher preaching to the choir, but
for ‘others’ out there unfamiliar with the details and stresses of long term care, “Cruel and Unusual” could be the proverbial whack upside
the head - “The conspiracy of silence leads, or is tantamount to, cruel and
unusual SOMETHING”.
Caregivingly Yours, Patrick Leer
videos: www.youtube.com/daddyleer
web site: caregivinglyyours.com
Peace Be With You Judy
ReplyDeleteWhat I've read so far is very raw but I am sure also very real.
A word of warning: if you are a care recipient, you don't want to read this. Really. You don't.
ReplyDeleteI know that my existence makes my caregiver's life much harder, both physically and emotionally, than my own. I know this, and I know that the only way to resolve the problem is for me not to be here. The best thing I can do for my caregiver and my family is to get out of their lives as quickly, and with as little bother, as possible. Since I'm not quite ready to do that for them yet, I generally try not to think about it.
I feel like I've been whacked upside the head.
Judy and zoomdoggies, thanks for the observations. Both 'raw' and 'word of warning' are excellent points. Approaching the anniversary of my 22nd year of spouse caregiving the impact is certainly less - simply because 'been there, done that' and I've learned that ... each and every caregiver deals with it differently.
ReplyDeleteI marked this to read later when I have more time; I skimmed parts of it. I have to imagine it is probably therapeutic to write down thoughts someone might have in care giving situations. I think some handle care giving better than others, it is always such a hard thing to deal with. To do it honorably and compassionately like I think you have learned over the years, Patrick, is commendable. I'm not sure how many would be willing to do such a thing. Such a tough dilemma to have to be in, one no one wants to find themselves in, either side, care giving or being the one needing care.
ReplyDeletebetty