A More Difficult Chapter with Dementia
I spent three weeks in Virginia, looking after my sister’s home and her golden retriever, and visiting Mom each day I was there. The last several visits to see Mom have not been easy, but this was the hardest for me, because I struggled (and am still struggling) with the cruelty of letting Mom live in her current state.
A year ago
Twelve months is both an instant and an eternity when it comes to dementia. Who knows how Mom perceives the change in her environment and in time? I know how I perceive it: A year ago, Mom could respond to things that you said, and if you read her a story, she could show comprehension, and answer questions about things in the past, though they might be confused. Mom could hold her attention on you during dinner.
Now, Mom struggles to remain awake for more than three or four minutes at a time somedays, and sometimes does not wake up unless she is vigorously awoken. She recognised me about three of the twenty days I was there. She is immobile and in a Jenny Chair (like a sunchair) so she is lying down 24 hours a day and largely immobile. Her hands no longer work to grasp utensils. She cannot chew effectively and so is on a liquid diet. She cannot communicate much at all, though she will almost always say she’s okay if you ask her. And somehow she’s still so sweet and kind to everyone around her.
It’s hard to make any case for her quality of life at this point.
A Different Kind of Facility
A year ago Mom had shifted from independent living (with help from a great group called the Comfort Keepers who visited Mom 4–5x a day). She had her own apartment, slept in a bed, and used her walker to go down to dinner each day, though she often needed a lot of help.
She began to fall quite a bit and need more medical attention, and we made the decision to move her into Assisted Living. Economically, it made sense, and the description of Assisted Living matched the exact services we needed.
The move to Assited Living accelerated Mom’s decline more than anything else.
It was the same building, and the same type of apartment, and the same food service. But the Assited Living Team of Harmony at Falls Run simply couldn’t deliver the quality of care that Mom needed. In the first month, Mom fell around eight times, mostly because the staff would leave Mom’s walker away from her. One staff member told me that Mom “needed to learn to brush her teeth” when I’d asked if they were brushing her teeth. My sister (with minor help from me) worked vigilantly to get Harmony to make a number of changes, but in the end the overall impact was that Mom became immobile, more disoriented, and declined faster in their care than I could imagine.
Quickly we reached a point where Mom needed nursing home care, and we needed to work with a team we could trust. Just down the street was Falls Run Nursing and Rehabilitation, and they were a high quality care organisation. The staff were professional and could always tell us what mom’s day entailed. The clinical care was top notch.
they increased their rates by $24,000 a year. I completely understand given inflation, how nursing staff are already undervalued, and the desired to not lose money. We no longer felt like Mom would have approved of the cost. It’s moments like this that can drive you insane: Are you making the right decision? How much is too much. We could afford it, but we also knew mom’s wishes. When do you override what your parents wanted and do what you think is right? This turns out to be the question that comes up again and again.
The staff at Falls Run, once notified of our departure, recommended a dementia care facility nearby. Once again, I can’t say enough good things about Falls Run Nursing and Rehabilitation.
My sister did all the work and checked it out. Marion Manor had a beautiful outdoor presence, but indoors it wasn’t the polished, updated facility that says, “quality.” But as my sister learned, and as I witnessed, the quality of care was excellent and their focus matched our needs. As the director told my sister, “We spend on salaries and raises.” Several other factors that contribute to the top notch care:
- Private and independent. Not owned by a corporation. No need to find more margin or help a national corporate exec get a promotion.
- They own the property. There is no mortgage. There’s no pressure of rising interest rates.
- As mentioned, their approach to people is evident in the quality and the character of the staff.
I am reasonably confident at this point, that public companies which operate nursing homes are not the right solution.
Hospice
A week before I was to arrive in Virginia, my US mobile number rang and it was Hospice from Mary Washington Hospital in Fredericksburg calling about enrolling Mom in hospice. This was a shock – my last intercom with hospice were the final days of my father’s life. After discount that the call was meant for my sister, and this was not end stage pallitive care, but manging a number of factors including Mom’s wounds not healing and Mom’s declining weight.
Hospice is an amazing service, and if you have a loved one who is declining, talk to you local hospice providers. Shop around – not for price, but for quality of service.
Assisted Suicide Is Illegal - but absolutely Ethical
After just a week in Virginia, I had no question that Mom no longer had a quality of life that met her or my standard for continuing to live.
Mom really doesn’t understand her state, so she cannot participate in the decision, so assisted suicide is really the wrong moniker in this instance. It’s more like mercy killing. During my trip I learned that my sister never heard about how her dog died while she was in college. Her dog had a stroke and was dragging herself around the yard, and my dad immediately reacted, took her away, and made sure she didn’t suffer anymore. He cared enough to act. Today I am sure we’d spend time and money extending the misery in that dog’s life because we don’t have the courage and care of my father – to do what’s right when it’s required.
How our society treats people like my mother is shameful. I’d like to make sure that every Catholic priest who has fought against Euthanasia legislation endures a painful and miserable old age to compensate for the pain and suffering they have caused so many people and their families.
Now, I’ve heard that convictions for merciful patricide are rare – but the gamble with the US legal system is not worth it. And my mother would not approve of her children being the agent of her Denise, though she expects us to prevent her from being resuscitated or treated for a terminal illness.
Everyone needs to tell their kids and friends what they expect to happen and how to accomplish it.
Goodbye
Each time I leave, I wonder if it’s the last time I’ll see Mom. Now, I certainly hope it is.
My last visit with Mom, she had energy and smiled a lot. She seemed semi-coherent and was giving her default responses to everything I said, which usually suggests that she isn’t understanding who I am or what I’m talking about. I told her how much I loved her, and she said, “I’m looking forward to getting to know you.”
I hope I never see my Mom again, but I probably will.
