My dad, my five siblings and I recently sat down for a conversation that was overdue. Dad began with hardly any preamble because we all knew what it was about and what was needed: my mom, diagnosed with dementia six years ago, was worsening. To care for her and to cope he would need more of our help.
He no longer dances around the term “Alzheimer’s disease.” At this point, every other likely cause has been ruled out. And matters really are too much for him to handle. We reflected with amusement on some minor blunders my mom had made in the early stages of the disease, before we considered having her evaluated: getting lost in Chicago where they used to live. Overspending at the mall. Being less diligent about gifts and holidays and gatherings.
Those incidents seem very minor compared to how she is now: anxious and upset in the evenings (i.e. sundowning). Repeating questions over and over again. Not showering or dressing properly without being forced to. When out and about, demanding to leave and go home. Once back, not realizing it and demanding to be taken home yet again. Refusing to believe she actually lives there.
These are the day-to-day hassles. Then there are the incidents that cause actual alarm, such as when she wandered off for an entire night and was only found in the morning, with the help of the police. We have no idea where she slept. It was probably on someone’s porch sofa.
Further, there are those moments that do not represent hassle or alarm, but just piercing sadness: my dad described his sorrow when he could not discuss his daughter’s wedding with my mom on the very morning after, because she did not remember. Later in the morning, with the help of pictures and reminiscences, she recalled a little.
He also broke up when he said how much he missed his conversation partner.
So the point of the meeting was to figure out a plan to meet her needs, however they may multiply in the coming years. Between six kids, she’ll be cared for. She will not be abandoned by her kids like her mind is abandoning her.
We need to care for our dad as much as for our mom. After all, he is serving her just as she would have served him if he had been the one affected.
We need to relieve Dad whenever possible by taking Mom out to the lake, to the Como Conservatory, for coffee, for open air concerts and festivals, or just for car rides. We need to keep her around the things that continue to energize her and make her smile and always have: walks, people, art, flowers, gardens, family, children.
We need to spend afternoons and evenings and weekends being present and living with her in the moment as much as possible. After all, with memory loss you have no choice but to live in the moment.
Our task is to be ready for anything during the gradual but unpredictable worsening. As a discouraging sign, she did poorly at a trial of a daytime center for people with dementia. It’s already time to try something else…
As I drove home from that family meeting, weighing the awesome burdens of the future, I wondered whether I had already said goodbye to my mom a few years ago when sustained conversation (beyond brief smalltalk) became impossible.
But I dismissed the thought. I won’t say goodbye until the very end. It’s just that it’s a long, twisting goodbye with joy and sadness interspersed.
At that wedding, which she has no memory of, she was the belle of the ball. She was thrilled to greet and say hello to people she had no recollection of later. She had joy there, but only in the moment.
pseudoisaac 