The Dementia Handbook

Updated: Oct 5

If I had to create a handbook for dealing with dementia, it would be two words long:

Expect anything.

Every day is an adventure. Oh hell, every hour is an adventure. You just don’t know what you are going to get from one minute to the next, it keeps you on your toes. You have to roll with whatever is thrown at you. The important thing is to not expect the person you are dealing with to come into your reality. If you want to have ease in your interactions, you should go into theirs. Let them take you on their ride, because they are incapable of going on yours.

In theater Improvisation, there is a rule: “Say yes, and…” What this means is you go along with whatever your scene partner throws out there to you. If they say you are both on the moon planting marigolds, you say “yes”, enthusiastically, play along, and then you add something. The “and” can be whatever comes to mind, whatever will further the story, make it fun and interesting to play out. You don’t throw something out to your scene partner that is going to trip them up, you create a path to a new idea. Sometimes it flows naturally out of the suggested scene, like trying to smell the flowers through a space helmet. And sometimes it is a leap, like suddenly you are on water skis. But it should never put your partner in a place where they are going to look bad. You want to set them up for success. Their success is your success.

It’s the same when dealing with someone who has dementia. You want to set them up for success. My mother was spending a lot time watching the Animal Planet channel. Innocent enough, until she started to think that what was happening on “Pitbulls and Parolees” was her own life and she believed there were a bunch of mistreated dogs in the basement. She was obsessed with this thought for weeks and I’ve been trying to tell her there aren’t any dogs down there. The other day she said to me, her eyes welled with tears, “We have got to get those dogs out of the cellar.” I looked her in the eye and said, “The dogs are all gone. We got all of them out of there. There are no more dogs in the basement." Her eyes got wide. “Really?” she asked me. “Yes. Did you hear Brad vacuuming earlier?” “Yes, I did,” she replied. “He was cleaning up after we got all the dogs out. It was a mess, but it’s all cleaned up now. The dogs are all gone.” She raised her hands in praise, then gave me a high five. She has not mentioned the dogs again. Maybe they will return in her mind, but for now, they are gone. No more “Pitbulls and Parolees” for her.

Shower day sucks. Getting my mother to take a shower is a challenge. She dreads them because she gets very cold. THIS she remembers VERY well, like a steel trap!!! Showers = shivers, and she hates them. It’s visceral, and her hatred of it lives in her body. It doesn’t matter that her mind is fuzzy, there is nothing fuzzy regarding how she feels about this chore. I try to set her up for success by not giving her too much to do at once. She’s not capable of handling multiple directions at one time, I have to keep it simple. “Grab the handle on the wall.” She does. “Lift your left foot. No, the other one, the left one.” She does. “Now shift your weight to your left leg.” She does, and so on and so on. This takes a very long time, but eventually the shower is done and we are both exhausted, she sits there shivering with multiple layers of clean clothes on, and I am sweating.

There is something precious and mysterious about the mind that battles with dementia. One moment they can have a relatively lucid conversation, the next they can’t remember the word for elbow. And there is no tracking the path of thinking. It goes wherever it may, defying logic at every turn.

The other day, my Mother took a tin bucket filled with dead flower heads and weeds she had clipped off plants, placed the bucket gently down in the middle of the yard, as if it were something cherished, then took a lawn chair and tipped it forward and over the bucket like a tent. Then she simply walked away. There would have been no point in asking her what she was doing after she walked away, she would not have been able to tell us. She probably wouldn’t have been able to explain it as she was doing it, she just goes through motions, like it’s instinctual, definitely not logical. My brother and I just had to smile and appreciate the absurdity of it. That is what there is to do. We must find the lightness in it, the laughter, because if we don’t, we’ll cry all the time. If we don’t accept the reality of this situation, that my mother as we knew her is gone, we won’t be able to be present to the moments of joy, like when she celebrates the removal of the mythical dogs from the basement.

There is no telling how long this will last. Her decline was so rapid it was alarming. In June, she was still living independently. Three months later, she would be completely lost without our help, living alone in her apartment with piles of dirty dishes in her closet, empty yogurt containers in her underwear drawer, and six pairs of unmatched socks on each foot. Some days I think she won’t be with us for very long, months at most. Then the next day I fear she will stumble around in this demi-life for years, surviving off a mini Reeses Peanut Buttercup and half of a nutrition shake a day, staring at the wall asking me if I’ll be the one driving her to work in the morning.

And then I see her face light up when my niece’s kitten curls up on her lap, or Wilbur flashes his brown eyes up at her as she scratches his scruff. They do bring her so much joy, those little beasties. As long as she is still able to find that, I will continue to follow her path, wherever she may lead me, expected or unexpected.

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