The Alzheimer’s Plateau

Tonight I watched Jon lead Bo from the kitchen to the family room,  Jon walking backward with Bo’s  hands in his. Bo moved with mincing steps, unsure of where to put his feet, pulling back, as Jon  pulled him along.  “Stand up, look at me,” Jon said.  Bo’s shoulders were bent, his head down;  he looked so old and weak.

In my heart I see a tall, healthy man — a tennis player, a golfer,  a skier, an enthusiastic guy headed out for his next activity.

But this is what we see  now.  We  lead him from one place to the other, making sure he doesn’t fall and that he understands where to go.  Often our instructions,  like “Turn around”  or “Sit down here,” make no sense to him. We tell him to lift his arms but he tries to take off his socks. We repeat then repeat again.  Sometimes he needs physical pressure to get him to step or sit. Sometimes he thinks the floor has depth and tries to step over a flower in the carpet or over the edge between the carpet and the hardwood floor.  Stairs seem to scare him.

People have always told me that the way of Alzheimer’s is decline from plateau to plateau, always downward, and it’s what we’ve experienced over these nine years.  For several months he has been on one of these plateaus.  There has been little change.  At night he sleeps without turning — anywhere from 12, even 14,  to 16 hours.  We keep the baby monitor on so we can check on him,  go to him when he’s restless.

In the morning each day,  I  awaken him to make sure he’s clean and dry, and then he goes back to sleep until Jon (or Cynthia) gets him up about one o’clock, gives him orange juice, then showers, shaves  and dresses him. Occasionally he’s so weak that we let him rest a while before going downstairs, but most days he is able to walk the steps with help and have his first meal of the day at the kitchen table. Then he sleeps on the sofa until dinner.

His eating is unpredictable.  Sometimes, like last night,  he picks up the fork and eats his food, slowly and messily, but he is in charge.  Others,  we feed him, reminding him to raise his head or even wake up for the next mouthful.  His old passion for ice cream has waned. Some times we offer it and he asks, “What’s that?” even with the dish in front of him.

Although I say he’s been on a plateau,  I try to gauge the changes  over this past year.  Jon has seen a big drop. Cynthia, who has been helping us since June, says she also has seen a decline.  This rotten, cruel disease just moves at a snail’s pace,  taking Bo away from me,  from one plateau down to the next.

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11 Responses to The Alzheimer’s Plateau

  1. Can’t exactly “like” this post, but I do thank you for putting it out there,

  2. dianne says:

    Such a cruel disease for everyone who loves and cares for YOU and BO……My mind never ceases to wonder, “Where does Nancy get the strength?” With love and hugs all around, dianne

  3. Pauline Koch says:

    You describe so well living with the decline of this insidious disease. Thank you for sharing and take care.

  4. Mary Smith says:

    It’s odd that thing about thinking the floor has depth but it seems to be quite common. We had plain carpet down and it ususally happened when dad stepped through a doorway.
    I hope he regains his enjoyment of ice cream. Does he want it when he sees it? Maybe the word doesn’t mean anything now but the sight of it might prompt his memory.
    I think this disease is probably harder for the spouse or son or daughter than it is for the person who has it. Thinking of you and I know you’ll keep your chin up and your courage.

  5. Paula says:

    This is one of the saddest diseases I have ever had to deal with. Luckily, (if you can say that) it isn’t has hard on the patients themselves. I am sending you a huge hug, Nancy!! And prayers for your continued strength.

  6. tracyleea says:

    Unfortunately, I can understand your experiences as I am a daughter dealing with mom’s Alzheimer’s. Hang in there, there will be some good days amidst the sad.

  7. MCI Alice says:

    His waning interest in ice cream is such a touching detail. I remember how well you used to describe his joy in eating ice-cream–the sensual delight. I know that whether he eats ice cream is a minor thing among the larger issues you face, but those small details are what mark the changes in a life. The slide may be at a snail’s pace it seems more like the slow drip of water torture….I think of you daily….

  8. You always make me smile

  9. My partner (aged 60 with Young Onset Alzheimer’s) always loved salad. As a family we were sick of eating salad but he always loved it. A little over two months ago he refused to eat a salad he was served and said he didn’t like salad. This has persisted. It is strange but amongst all the things he can no longer do, this small thing feels huge, like a very personal bit of Trevor that has gone.

    • Oh, I”m so sorry you are dealing with this — and so young. I understand the size of this “small” loss (salad.) Just like the ice cream, these changes are so big because they’re alerts to the progress of this horrible disease. My heart goes out to you. And thank you for sharing with me.

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