Alzheimer's disease · Caregiving · Death · Family · Grief · Memories

Dia de los Muertos / June 17, 2006

This is a story of how dementia and family dynamics can be kneaded together to create something that will rise on its own. It’s an example of how one situation and its ripple effect stoke the stress that often underlies the mindset and the judgment of the caregiver, and which then reaches the Alzheimer sufferer in amplified form. I don’t really know where or when it began–one day this week I had mentioned to my mother offhandedly that I’d like to put fresh flowers on my father’s grave on Father’s Day–but sometime during the day on Thursday she came to believe that both dogs had disappeared, which must have set the whole train in motion. My mother often doesn’t see the dogs if they are not in her direct vision–they could well be lying within her peripheral vision, but I suspect that her world has tunneled somewhat.

So when I got home from work that day, I immediately saw the dogs in their usual spots in the living room, and my mother soon appeared, looking haunted. I think for a second she didn’t know who I was. “I couldn’t find them,” she said finally. “I tried to call him–I called everyone I could think of–but I don’t know where he is.”

I know now that my first response should have been reassurance, despite not knowing what she was referring to. But her appearence rattled me and I peppered her with questions. This confused her further, and I realized at this point that I would need to back off. I was also realizing that her concern for the dogs had become a fixation on my father’s whereabouts, and I knew that by trying to calm her down I could also distract her, which might hasten her forgetting. She seemed to settle down after a few minutes, and so we sat down to eat a light dinner. But her anxiety had unsettled her digestive system, and after an upsetting bout of acid reflux, I got her to drink some Maalox and settle herself in the living room.

For a short while after this I thought we were out of the woods. She watched the Mass and I put curlers in her newly washed hair. And then I found her with the phone in hand, scanning the list of phone numbers. “This isn’t like him, he usually calls,” she said. “I haven’t seen him now in a couple of days.” My antennae went up on that statement, afraid that the hallucinations of last year might be returning. But it wasn’t worth the upset at this point, so I took the phone and told her that I would call later on. She looked at me with suspicion. “I won’t be able to sleep unless I know he’s alright.”

“Where do you think he is?” I asked. She thought a moment and then named his younger sister’s house. I dialed our own number and let her hear the busy signal. “I’ll have to try later. Why don’t you go to bed and I’ll try again in an hour.” Because she was tired, she gave in. The otherworldliness of her reality–not seeing him for days and thinking he was at his sister’s house–made it harder for me to gauge the depth of her loss.

The following morning she arose and dressed immediately (instead of drifting around in her bathrobe, moaning about her legs) and seemed as alert as I’d ever seen her. She didn’t mention my father, but I had spent the previous night in thought about her ability to be alone, when delusions like this could take shape out of nowhere and mushroom significantly before I would come home. I knew it was time to start visiting assisted living facilities; I had to stop dragging my feet on that. And I’d have to reinstate the homemaker, despite my mother’s objections.

I had taken the day off, afraid to leave her alone until I was fairly convinced that the delusion had petered out. A neighborhood friend dropped by in the morning, and later on I gritted my teeth and scheduled two appointments for next week with local assisted living homes. I had already done the research and made a list of what I thought were the best local places–a short list, due to the Alzheimer’s complication. By this time my sister was at the house, and we were about to go outside for a moment when my mother piped up: “Did you make that call last night? Did you talk to Daddy?”

“Everything was okay.” I said.

“What do you mean? Why isn’t he calling? Can you call him again right now?”

“I’m in the middle of something–why don’t we do it later?”

I hurried along, not comfortable with the deception, but not wanting to take a chance on the truth. I was remembering advice I’d gotten from both professionals and books that delusions of this kind–if comforting–can be left carefully undisturbed. But was this comforting? My sister felt not, even after I’d explained my rationale. I found her telling my mother, in very explicit terms, that her husband, our father, was dead.

At a certain point my mother absorbed it. Her eyes teared up and she asked us why we’d lied to her all this time. I only lasted about a half-hour into her rattled interrogation: How did he die? Did he have a funeral? Who was there? Was he in the hospital? Where was she when this was happening? Her shock and sorrow were as fresh as they had been on November 18, 1999. I was so angry at my sister that I got up and left her to face my mother’s grief. When my sister found me later on I practically threw my copy of The 36-Hour Day at her and said, “Educate yourself.”

My mother’s grief seemed to fast-forward. By the time she was ready for bed, she seemed calm and expressed relief that my father hadn’t suffered. Then she slept without interruption.

As I write this during the following afternoon, though, it’s taken hold of her again. “I feel awful that I wasn’t there when he died. Now I can’t settle,” she’s been saying tearfully. I’m not sure where this will end–it seems too late to double-back to the distraction and pretense phase. My sister called this morning with the realization that she should have listened to me and kept her mouth shut, but she’s not here to face my mother’s sorrow. There’s not too much in the caregiver advice literature on how to patch up situations like this.

Postscript: I took down the box of cards and spiritual bouquets that we received after my father’s death and read them over with my mother. It was the only way I could think of answering the endless questions she was asking today. At one point she remarked that she was getting the sense that it had all happened awhile ago, but I don’t think that stuck. But she remembered each person whose card we read. Then we looked at a few photos of my Dad. She still seems a little mopey.

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