as Care-Partner

Tru here.  This is part of Bits-n-Pieces; my memoirs.
i have needed a care-Partner … but i have also been a care-Partner; … two sides of the same coin.


My Experiences of Care-Partnering:

Care-Partnering was modeled early for me;
my earliest memories were at about three years of age, in the bedroom of an elderly lady that we had living with us, Rowena Berry.
i remember her velvet pillows, and the smell of her perfume, along with her beautifully carved baroque-type wood table (that now sits in privileged placement in my home).
She was not a member of my “blood” family, but neither was she a “boarder” … in that she did not contribute funds to the household.
In spite of those factors she was definitely an important member of the family.
Rowena died when i was about 5 years old, and that is a grief remembered.

Then my great grandmother started living with us during the summers, beginning when i was about eight years old (1965?).
In those years we did not have a name for why she was the way she was, but her dementia symptoms created large challenges for all involved.
if i knew THEN what i know now, it could have been much better,
simply by having realistic expectations , so there would be less accusations, and more understanding of symptoms.
i think Leota quit spending summers with us the year Dad began needing care, and eventually family was no longer able to meet her needs best, so she was moved to a care-facility for her end-stages.


Care-partnering was again modeled when i was 12 years old and we discovered Dad had cancer 1969.
He was about 35 years old, and doctors estimated 2% chance of survival, so they tried to prepare us for that eventuality.  He lost one lung and the lining of the other to surgery, and us kids were somewhat involved in his care team.
That is when our conversations began about the meaning of life … and much re-establishment of priorities.
This photo was during his “recovery time” after surgery (and i was about 13).


i married, and in 1982 we moved to Italy.
Dad’s cancer returned in 1984, when he was about 50 years old,
so the children and i moved back to USA, so that at 26 years old i could again be part of the care-team for Dad, allowing Mom to continue working for the health insurance.  Dad died 1985.

in 1997, a dear friend was dying.
i discovered that if i stayed in her hospital room with her, then she could stay without belt restraints, because i could wake and reassure her.  If i was not there, then hospital personnel needed to put belt restraints on her.
So i spent those last two weeks with her, working during the day … and spending the nights in a chair beside her bed in the hospital room. .

in 1998-1999, my father-in-law was dying of cancer.  He lived with us, and we cared for him.

in about 2002, my mother-in-law moved in while she was dealing with her cancer.  We cared for her until she died 2003. .

Mom was caring for my maternal grandmother (and her dementia) when she called requesting my help.  My guess is that this was about 2001.  i was dis-Abled and no longer able to hold down a job, but Mom didn’t request much.

She said it was very discouraging to only have contact with someone who could not retain elements of conversation.
Mom needed to have an “adult” conversation daily, so she requested i call on the telephone every day at 9am.  i talked to Grammy then i talked to Mom. Sometimes only about 20 minutes, and sometimes 90 minutes or more.
It was a reason Grammy needed to get up, and a wonderful way to stay in contact.
i was a tiny piece of Grammy’s care-team, because i was “caring” for the care-Partner.  I was able to get in several long visits of almost a month, but living two states away made those visits more complicated.
With Hospice help, Grammy was able to stay at home remainder of her time, and 5 years later she died 2006.  (But i kept calling Mom at 9am for 7 more years, LOL).


Putting this in “current” perspective:

With dementia, it seems many folks spend a good part of the time with an “us” and “them” framework;
Care-Partners as compared to the Person Living with Dementia.  In my experience and observation, these are two sides of the same coin.

Care-Team: Let me be a part of the team as long as possible, having some input on decisions and actions until those abilities are lost.

Example: Now that i am no longer able to use knives or stove, “cooking” is a problem for me.  Asking me to make out a menu makes me very uncomfortable, deciding how much time and effort YOU must put into food preparation, but i appreciate being asked if there are any special foods i would like this week.
It is good to help out on some of the kitchen things, but i need constant reminders about washing my hands, and some of the other safety concerns.
Please remind me of some other activity i would like to do BEFORE you get angry at my dys-Abilities.
“I can take it now, if you would like to finish brushing the dog”.


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