Every couple of months in this space, I am chronicling the journey with my mom (and a similar journey with my husband’s mom) through the ravages of dementia. I have learned that I do not take this journey alone, that many of you walk this road, too. And somehow, writing it down, saying it ‘out loud,’ helps us all to manage the pain and the fatigue of this particular path.
You can read earlier posts here, here and here.
Enormous chunks of time are gone now.
How can I watch this? How can I help? How can I say the right thing, do the right thing, be the right daughter?
I am beyond knowing most days. Beyond knowing.
We made plans last weekend for my youngest brother’s two sons and one daughter-in-law to make the long drive from their home to ours. My youngest brother, the one who died in his sleep just over three years ago. This would be the first time these nice kids would see Mom in her new living environment, the one we moved her to in February. The one designed for memory and cognitive loss residents.
The one that reminds me every single time I am there that my mother is fading into the woodwork, that the woman I knew is vacating the premises.
I have learned not to tell Mom about visitors or traveling plans too far in advance. When I do, she frets over it multiple times per day, convinced that NOW is when it all happens. Several weeks ago, she asked me to contact Ken’s boys; she wanted to see them. I was happy to do that.
Thank God for Facebook — connections were made, plans set. One day before our time together, I told mom that we would all go out to lunch together. She was excited and grateful and seemed to understand — seemed being the operative word.
Alarming situation number one: when we arrived, parking in the subterranean lot beneath the wing in which she lives, riding the elevator and turning the circuitous route to her unit, we found her standing outside the building, as cars drove nearby. Maybe that bracelet will be necessary after all, the one that sets off the alarm if she leaves with no one noticing.
I dread it. Dread it.
Alarming situation number two: after greeting everyone gladly and expertly, she climbed into our car, while the younger generation climbed into their own, to follow us to the restaurant. “Who are those people?” she said.
Who are those people?
These, dearest mother-of-mine, these are the very ones you so wanted to see. The very ones. How do I answer you without letting the deep panic I feel creep into my voice? How do I DO that?
Alarming situation number three: my darling mother had no memory that her son, her baby, is dead. Then it all came flooding back, right there, in the backseat of our Honda Pilot, as we drove to lunch on a Sunday afternoon. Tears, sobs, deep sorrow, and multiple explanations about who each young person was, how they were related to one another, to Ken and to her.
More and more, it feels as if this dreadful process is a strange and twisted version of Groundhog Day — the horror movie version. Old memories disappear, submerged beneath the sea of a shrinking hippocampus. Then they jump to the surface, fresh and sharp, like icebergs that head straight for the ship of her heart.
She was overwhelmed and embarrassed that she could not find the pieces, that she could not tell the story. “What must they think of me?” she asked in the car, “Have I abandoned them?”
“No, Mom. You have done nothing wrong — they are so glad to see you. Oh, Mommy! You are so good socially, they don’t even know you’re struggling!”
I think she believed me. I hope she believed me.
And she was able to cover her confusion, at least a little. But that is getting harder and harder to do. All during lunch that day, she would whisper to me, “Now, who is this sitting next to me?” Later that night, and the next night as well — “Tell me again who they were and how I know them.” Finally, today at lunch, she seemed to have most of the pieces in place. Until she realized that meant that my brother must have been married at some point in his life — and another round of panic set in. “Why can’t I remember?” she asks me, tears rimming those blue eyes.
Every dementia journey is unique, I’m told, each story a little bit different. I have to say that I do not like this one, not at all. The only ‘happy ending’ I can see is a pretty grim one. It looks like this: my mother is no longer aware that she is losing it, no longer able to worry about what others think about her, no longer concerned about what she remembers and what she doesn’t, no longer frightened when she realizes entire chunks of her life have fallen into a sinkhole, never to be seen again.
The problem with this scenario is that once she gets to that place — that hard but strangely easier place — the only thing left is death itself.
And right now, death is looking like the best option available.
Do you have any idea how hard it is to write those words? How hard it is to think them? To pray them?
Oh, dear Lord, give me eyes to see your goodness in the midst of all this pain, to find grace in the grim realities, to remember that you are Sovereign over aging brains, that you love my good, beautiful, funny, outrageously intelligent and faithful, Jesus-following mama even more than I do.
Because right now, Lord, right now? Trust is harder and harder to find. And I find myself crying with the psalmist, “How long, O Lord, how long?”