No visits, no phone calls, no letters or cards for holidays, birthdays or special occasions from certain friends and family members who have permanently fallen away from Mom's life since her diagnosis in 2011. The feeling of Mom’s ‘profound sadness’ (her words) is real and locked in.
Thankfully at this point with this disease, she doesn’t remember most of the particulars as to why these people aren’t around anymore, but there are times she can accurately remember a conversation or behavior. Go figure. What is left behind, however, is the hurt and confusion as to why these people are no longer in her life.
A few years ago, her disease, of course, wasn’t as advanced. She confronted a few of these individuals as to why they were not in her life anymore. Because they were not around her enough to know where she was “at” with this disease, their assumptions were wrong and their responses were total bullshit, “…Oh but we do visit and call,” they said, “…didn’t you receive my Christmas/Easter/Birthday card?” - implying Mom wouldn’t know the difference one way or another.
Well, she did.
Thankfully, Mom has a unique sense of humor, and even today considers their explanation(s) as “a complete blow job.” As fabulous a response as that is, and a great position for her to be able to take, I have also seen her sit quietly crying over these remarks as well.
On the flip side, a recollection that is particularly heart-felt and joy-filled, is also remembered. The cabin at the Lake for instance, is a source of great memories and good feelings for her. She also still knows and enjoys old, long-time neighbors, grammar school and college friends. She even remembers a few very special individuals who worked with her over 35 years ago when she was an orthopedic nurse, or later as a Chaplain for Hospice. She may not remember their actual visits anymore, but she still knows and remembers them as a loving, consistent part of her life.
What Is True For Me
I learned never to assume anything about this disease much less assume what Mom will remember or will not remember.
I won’t mess with conduct that will erode my integrity, much less Mom’s. She is trying like hell to hang on to some semblance of dignity every second of every day, and I’m not about to make it more indignant and offensive by bullshitting her.
I imagine the individuals who behaved the way they did, have trouble, in general, with accountability and assume too much. That’s their business and short-comings, not mine. I choose to be an authentic constant in Mom’s world. No bullshit. Ever.
What is talked about today is not the same as a term we caregivers use, i.e., “Compassionate Misinformation,” a writing for another day.
Today’s offering is about our own conduct, our own integrity and our own moral compass and how we apply it to respecting our loved one’s dignity during the care we provide them, especially on the off-chance they are aware untruth and the Truth.