Mondays With Mother: An Alzheimer's Story

In 2002 my mother was diagnosed with Alzheimer's. It is a hard road, and we live it one day at a time. This is a chronicle of her disease and my Monday visits with her.

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Name: Anne Robertson
Location: Plymouth, Massachusetts, United States
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Wednesday, December 26, 2007

The Last Noel

I'm not sure how many more Christmases like this I can handle.

Today was actually my second December visit. The first was for the annual Christmas party that The Birches throws for residents and their friends and families. This year was scaled back from the previous two and initially I blamed that for Mother's almost complete lack of engagement. Unlike the prior two years, the Christmas carols did not evoke a single glimmer of recognition. But then this year they started playing them later, and we were headed down to have a family picture taken before she really had a chance to engage. Or so I said to myself. It was a non-event, and so I didn't write about it.

Like last year, some of our extended family was planning to visit on the 26th, and since this year I live an hour further away, I decided not to go up two days in a row. I spent Christmas with my brother and his wife and then we all went to Concord for lunch with the others today. I also brought my dog, Ruckus, for the first time.

Mother was there, but it's hard to say much more. She ate, but only when hand-fed. The presents brought no sign of even a remote interest, even with the Santa bag with the microchip that had Santa saying "Ho! Ho! Ho! Merry Christmas." Not a word, not a smile...a slight bit of interest in the tissue paper. She still lists considerably to the right...something I've noticed since that day I found her slumped over in her chair. My mother, who taught me the love of all living things, did not even seem to notice a 70 lb. dog sniffing her hand.

And so we ate, and the rest of us had conversation and got caught up on each other's lives. Then it was time to get her back to her room for a nap and hit the road. My cousin, Marek, had brought his guitar so we could sing some carols. We got Mother lying down on her bed and then we started singing. Mother's eyes were open, but other than that, there was no sign from her that anyone else was in the room or anything else was happening.

We began with The First Noel. No response. No lips moving. Mother's hand was up by her face, her head turned away from the music, her whole body still listing right. It almost looked like she was sucking her thumb, and I began to wonder if the tilting of her body was the beginning of the fetal position where so many Alzheimer's patients seem to end up.

When she didn't respond at all to the carol, her sister Judy began to tear up and left the room. Of course that began to put me over as well, but we soldiered on, not quite sure why we sang but sure that it was necessary. We did carol after carol...Joy to the World, Angels We Have Heard on High, Away in a Manger...every verse. Mother didn't move.

It came time to leave. I gave her a kiss goodbye and again, looked straight into her eyes and said, "I love you." "Thank you" she said. And she smiled.

On my drive home, I wrote some lyrics for a song. The tune and other verses have yet to be written, but here's the chorus:

Oh, I'll remember for you
When the mist begins to fall,
When my name becomes a mystery,
And my face you can't recall.

When it's Christmastime around you,
But you cannot hear the bells
I will sing the carols for you
'Til they play the last Noel.


Anonymous Pat said...

Have only just found your site. Very moving. My mother also has Alzeimers and I can relate to your experiences. Unfortunately my mother also has a severe paranoia including a persecution complex which is taking over her caring and generous personality, and she halucinates, seeing 'God knows what' fearful things. Your site helps us to know there are others out there trying also to deal with almost impossible decisions in trying to do the best they can for their loved ones. Many thanks
Pat Muller

1:44 AM  
Blogger Rebecca K said...

wow, really powerful. I too was so moved by your post and though my mom is just gone (not Alzheimers) I can imagine the loss must be the same. Thanks so much!

3:52 PM  
Blogger Gail Rae said...

Lovely song, absolutely to the point, Anne. Gives me chills. I hope you finish it, put it to music, perhaps promote it, starting with the holiday gathering of families and friends of clients at The Birches. I believe it has the capacity to become a poignant, treasured holiday carol for, and to, so many of us, especially as our ranks grow.

11:31 AM  
Blogger the reverend mommy said...

Just found your blog -- I'm happy you had a moment of grace with her. It's a hard thing to live into.

Prayers your way today.

7:26 AM  

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