From The Inside Out

As some of my readers know, my 91-year-old father has dementia, “probably Alzheimer’s” as his medical chart says.  In the last few months his health has declined considerably.

It’s not that this has been unexpected, of course.  But I more or less made the decision a few years back that I wasn’t going to “study” Alzheimer’s.  You might think that is counter-intuitive;  why not understand the disease as much as you can so you know what to expect?  A friend even loaned me a book, a fictional account of someone dying of the disease, but I chose not to read it.  It’s not that I am in denial, although in the very beginning when he was first diagnosed I had trouble accepting it.  I can see very well what the disease has done to him over these past ten years.

No, it’s more because I don’t want to be sitting here anticipating every symptom of decline in him.  I won’t drive myself crazy watching for signs that the disease is progressing because I worry enough as it is.  I just want to make the most of the moments when he seems his old self…those moments still do happen, but with less and less frequency.

I’ve been travelling to the mainland every three weeks or so lately, spending time with him when he is awake or just sitting with him while he sleeps.  He sleeps a lot.

About a week ago when I was there, I arrived around 9:30am to find him in bed, which wasn’t a surprise.  The nurses let him sleep in because he’s “less grumpy” if he does.  He has become more easily agitated in the last few months, some of which has been calmed by low doses of a new medication, but he will still have outbursts every now and then when he’s confused or embarrassed or simply tired.  He is also physically very weak, his old legs barely holding him up whenever he moves around.  He has lost considerable weight because his appetite has declined.  It’s not that he isn’t hungry, but often he just gets confused when there is more than one thing on his plate.  He doesn’t know what to eat, as if there is some mysterious order to eating that he can’t figure out.  So he gets up and walks away.

He heard me when I entered his room, so I sat down on the edge of his bed.  I found him curiously engaged that morning and we held hands and ended up talking on a variety of topics for a good forty minutes.  It was uplifting for me, because he hadn’t been as talkative or interactive for a number of visits before.  His nurse came in to help him get up and dressed, so I left his room and waited for him down the hall.  He finally came out, fresh and dressed with his walker and the nurse beside him.  I walked with him to his seat in the dining area and watched him eat breakfast.  A few tables away, a resident was calling out, over and over, as many of them often do caught up in the fog of their dementia, not realizing where they are or what’s going on.  Most of the time the other residents pay little attention because it happens so frequently, I suppose, that they stop hearing it.  Not all of the residents have dementia, but many do.

When my Dad had enough breakfast, we spent a little more time together in his room, and then I had to leave.

The following morning I went back, not expecting to have the same interaction with him, and at first it looked like I was going to be right.  It was a little later in the morning when I arrived, so I assumed he would already be up.  As I came off the elevator I heard someone calling out again and at first paid no attention, until I realized that it was my father’s voice.  I followed the sound, and found him sitting on a piano bench in the common area, his hands cupped around his mouth, yelling “Could someone please tell me where the hell I am?”  I hadn’t seen this behaviour in him before, so for a moment I was taken aback.

I walked up to him and gently took his hands in mine, bending down to be at eye level with him.  “Hi Dad.  It’s okay.  You’re at home.”  “Where’s home?” he asked, a little surprised at my sudden appearance.  “Home is Rosewood.” I said, naming the care facility he’s been living in for the last several years.

“Rosewood?”  “Yes, this is your home.  Would you like to go back to your room?”  “Okay.”

I helped him up and held his arm as we walked gingerly back down the hall.  On the way, he suddenly said “Sometimes I feel so useless and stupid.”

I was surprised to hear such a revealing comment and tried to reassure him that he was not useless or stupid.  When we got to the door of his room, he expressed relief at recognizing it.  Once we were inside and sitting down, the conversation continued.  I said it must be scary to not know where you are sometimes.  He said it wasn’t scary, just frustrating.  I told him that he had dementia and that’s why he was having trouble remembering.  I’ve told him on other occasions that he has dementia, but of course, he doesn’t remember.  “Dementia?” he said and I nodded my head.  “It sounds too close to the word ‘demented’,” he smiled.  I laughed at that little hint of my old man who had always had a cheesy sense of humour.  He repeated the joke a number of times to his own delight.

“Sometimes I’m in a movie and I can’t tell what is real.” he said, revealing something again about the life he has been living.  And the conversation continued on in fits and starts over the next hour or so.  I didn’t want to leave or let go of this experience of finally hearing my father’s description what dementia is like from the inside out.  Finally, the topic changed to other things, family, the weather and more mundane subjects.  He was tiring, his eyes sometimes closing when we weren’t speaking, and I knew that the window of opportunity was closing too.

When I had to leave to catch the ferry home, we hugged and kissed and I told him how much I loved him and what a good father he is.  “And you’re a good daughter,” he said, “say hello to Michael and the girls.”  I know he doesn’t remember names very often, he often calls me by his sister’s name, but it was nice to hear that he still knows who we all are.

The next time I visit him, I don’t know what I will be able to expect, and I don’t particularly want to know.  But I will be happy with even just a moment or so, just a hint, of my “old” Dad.


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