Day Care substitute

During the CB, or circuitbreaker which is what our lockdown was called, there were strict restrictions on contact with the elderly, particularly in care institutions. To protect the elderly, no visitors were allowed at nursing homes and elderly day care was suspended. These restrictions extended into Phase 1 after the CB.

Mom’s dementia is so advanced that she doesn’t miss dementia daycare. But perhaps daycare misses her. In any case, with the centre closed and the staff still on payroll someone probably thought something still had to be done for the patients by the staff. After all, the whole idea of dementia daycare was to stimulate the mind and slow dementia progress. And that should go on, CB or not.

I think that’s the idea behind the one-hour WhatsApp meeting. Every now and then the centre would call and make an appointment with Mom. During the call, Mom would sit facing the handphone, looking at three animated faces of the daycare staff and one vaguely familiar one (her own).

They would cajole her to speak and to sing. Sometimes they would speak the wrong language to her, which is not her preferred language, and Mom would struggle to respond in that language. Maybe they think that struggle is due to dementia, not realising their error.

Sometimes they would call her the wrong name and she would stare back at them. Maybe they think that’s due to dementia too. In actual fact she didn’t know they were talking to her, and if she did, she didn’t know how to correct them. Maybe she was offended. I would be offended too.

But it’s good that they tried some form of contact during CB and in Phase 1. Now that Phase 2 is here, elderly daycare is allowed to operate again, so things will be back to “normal” except plus face masks and social distancing. I wonder how the new changes will be accepted amongst the persons with dementia. I hope there are no covid breakouts amongst the elderly care centres.

Note: CB started on Apr 7, Phase 1 on Jun 2, Phase 2 on Jun 19.

Conversation in advanced dementia

As Mom’s dementia progresses it gets harder to figure out what she still understands. Her responses are slower. Swallowing takes an effort, as does spitting out after teeth brushing. But speech can be wonderfully clear. We had interesting conversation this morning as I was leaving for work.

“Goodbye,” I say, “Goodbye.”

“Goodbye,” she finally repeats after me.

I wasn’t sure she understood. So I prompted, “I’m going to….?”

She looks at me, puzzled, “Where are you going to?”

“I’m going to work!”

“You’re going to work!” she laughs.

At the door I turn back and ask, “Do you want to go to work?”

“No,” she answered. Unequivocal.

“So you only want to enjoy life?”

“Yes.”

Disorientation

As the years pass and the dementia gets worse, Mom gets increasingly disorientated. It happens episodically, so we often forget that it is there.

Every now and then, she would not know who I am. Once it happened when I called home and she could not tell it was me on the phone. Another time when I walked in the door, she seemed to think I was someone else. And once, when I was visiting her in the hospital, she did not recognise me at first.

She could not connect Me (the person she knew well) with the person she was seeing in front of her or hearing on the phone. I have never felt that she had forgotten me, only that she could not recognise me at the time. I have read of this happening in persons with dementia, and what happens is that minutes (or hours) later, something suddenly clicks and the loved one is recognised and known.

Other than disorientation with faces (it happens quite often with my face for some reason), Mom is also disorientated to Time…. sometimes. Particularly after an afternoon nap, she mistakenly believes that it is morning again, and so brushes her teeth and expects breakfast. It helps a lot that she just goes along with us and doesn’t argue when we tell her the actual time. She just smiles and accepts it.

Recently I had a pretty bad scare when Mom was both disoriented and fearful. I had gone to pick her up from the daycare centre, and she had been on an excursion. Somehow, she did not know where she was, and that I was there to take her home. “Where are we going?” she asked, “You tell me first, where are we going?” She went on to say, “What going home? Where?”

At that moment, I had a pang of deja vu, and wondered if this was going to be yet another occasion when she did not know my face. If that happened and she put up a protest, we could be in a deep stew. I put on my most welcome and reassuring smile, and confidently said, “Come with me, you will see.” And with that she followed me to the car, got in, and sat quietly somewhat dazed until we got home. I guess she felt better with me than with the crowd of people she did not know. Maybe the car was slightly familiar, and as is her nature, she just went along with it.

It made me think that familiar surroundings and people are so important to persons with dementia. When they cannot trust themselves to remember and think clearly, they have to rely on cues, what seems familiar and feels safe in their gut.

ADA
One of Singapore’s dementia daycare centres