by Lisa Kaufman
I received a call this morning. A man who has never spoken with me before wanted my opinion about the care needs of his 80-year-old mother. He explained that she has moderate to severe (read severe) dementia, visual impairment, is hard of hearing and is in renal failure requiring dialysis.
He went on to tell me she lives in a little Assisted Living and he doesn’t really think they provide the best care. Because of the Corona Virus (COVID-19), she is quarantined in her studio room. They bring her meals on a covered Styrofoam tray, which she doesn’t eat because she doesn’t know what to do with that. He tells me she has been “belligerent” recently and refusing her meds.
His question to me was: what am I to do for her when I cannot even get into the building? Followed closely with: How can I be there for her? Should I move her? Should I consider Hospice?
Well, dear colleagues, this is the tip on the iceberg… We see the most impaired, frail or dysfunctional of people, and their situations are going to be unique, and heartbreaking.
He and I talked through some options and some realties of the options presented to him. If he chooses Hospice, his mother will no longer get dialysis, and she will die. If he moves her, the caregiver shortage and a new team will compound her current isolation.
First things first, get her checked out for a UTI, I say. Secondly, she could be so under-stimulated by both her cognitive impairment and her lack of sensory input that she could be hallucinating or acting out.
But can she thrive in this kind of environment? he asked. “No,” I told him, “she will not thrive. People with severe cognitive impairment make profound non-verbal decisions at end of life. The choice not to eat may be one of the last decisions she can make. Listen to her, be observant, and she will find a way to tell you what she wants to do.”
This is incredibly hard and the current crisis is making families make the most difficult decisions they may ever have to make. “Know that you are doing the best you can with the information you have, and you are doing it out of love and compassion for your mother. No matter what you choose, it will be the right decision,” I said.
The man thanked me for listening so openly and offering him solace.
Here is my take-away. We, as Aging Life Care Managers, will have even more challenging ethical dilemmas, and we will brave them as we do best. And our hearts will break and we will cry and we will survive. We must be even more compassionate and strong than ever before. We are needed. We make a difference. We are here, now.
Love and blessings,
Lisa Kaufman, MS, CMC, CTRS, C-EOLD is a certified Aging Life Care Manager™, and most recently, a certified End of Life Doula. She has owned and operated SeniorCare Options since 2001, and she is an active member of the Aging Life Care Association™, and is one of only a handful of certified care managers in Georgia. She is a Past-President of the ALCA™ South Eastern Chapter and is the only Fellow / Certified member of ALCA™ in Georgia.