It’s funny. You can think you are doing just fine, and then you get a phone call that knocks you sideways. But I am getting ahead of my story.
My mother has been at her present nursing home for just shy of two years. Every three months, there is what is known as a care conference. This is a meeting with representatives from the different people who treat and care for my mother. There is always a nurse, a dietitian, someone from recreation and a social worker. We hear about how my mother is doing. I come in person and squeeze in an extra visit with my mother. My brother participates by telephone from out of state.
We do not tend to learn much new information at the meetings, as the facility is required to inform us whenever there is a change. I get calls if she is not feeling well, if she falls, when PT starts or ends, when it became clear that she could no longer feed herself independently most of the time.
At last month’s meeting, however, the nurse kept referring to my mother having “advanced dementia.” When they asked if we had any questions, I realized that I did. I said, “I get that she has advanced dementia. But, what comes after advanced dementia?” The social worker explained that the facility actually has a palliative care doctor on staff. She usually meets with families when their loved one is dying. But she is also available to meet with the resident and then with the family, to share her observations and thoughts on all that comes next. I asked for such a meeting, which, at the time, seemed premature but helpful for information gathering.
The doctor met with my mother and we scheduled the family meeting for last week. It was actually a fantastic appointment. The doctor’s own background made her both knowledgeable of and sensitive to all that was going on with my mother. Turns out, my mother’s illness is very advanced. We were told there is typically a 1-3 year life expectancy once the patient loses the ability to walk. My mother is already well past year 2.
We learned that the next stage is the last stage: the end.
Sometimes the end follows pneumonia. Sometimes it starts with a UTI. Often, the end happens shortly after the individual either stops eating or forgets how to swallow.
This doctor explained that the concept of hospice is different with alzheimer’s and dementia patients than it is with many other illnesses, like cancer or heart attacks. Instead, it can be a years’ long process. Sometimes the goal is not to prolong the patient’s life, but to make the person as comfortable as possible until the end.
I remember how wrong it felt, when she was first admitted to a facility and I was asked whether our family wanted her resuscitated in the event that she was failing. My brother took one look at my horrified face and reminded me that this was not about me choosing whether to save our mother, but instead, about honoring her wishes. She would never want to prolong an institutionalized life.
A few years back, I was told that there was something on her mammogram that could use a second look. My initial response was to say, sure. But when I thought about it, I could not imagine how scary it would be to my mother to go to an outside office for more invasive testing. And, to what end? If they found something, what then?
We agreed as a family to choose hospice care for my mother. It sounds like in doing so, the facility has fewer hoops to jump through. It will have immediate access to additional medication to manage discomfort, as needed. She can live out the rest of her life as pain-free as possible.
It was surprisingly a gift for me to learn all these things. We had had so many care conferences with minimal changes that my mother’s debilitating condition was almost feeling routine. But talking about the fact that the end is coming, probably sooner than later, that the focus can be her comfort and that her suffering will end, it made me realize that I should take whatever steps I can to meet this next, final stage at peace. At peace with her and with myself.
I started working towards this goal. Reading. Finding someone to talk to about these major life changes. Thinking about how to face the next parts with strength and forgiveness.
Then, this Monday, the phone rang.
Something was not right. There was seizure-like trembling. A few hours later, she was listless. It was too soon to say if this was an isolated episode or a mini-seizure, a small stroke, or something else similarly life threatening. It would be a real test to see what happened during the night.
And, even with my family all on the same page and a plan in place, I was scared.
We called in the morning and learned that after some grimacing that suggested discomfort, and a dose of morphine, she slept well. We learned in the afternoon that she was awake and, although worn out, she was eating and able to engage. Maybe it was a one-time thing and the worst has passed. For now.
But there is no question that it is coming, sooner or later, whether or not we are ready.