Downhill . . . in Stages

Many years ago - so far in the past that digital cameras didn’t exist - I hiked in Nepal. I had to balance the worth of each potential snapshot with the weight of the film, the cost of having it processed, the weight of the prints. (When carrying everything on your back, every ounce counts.) Sometimes I think this was lucky for me -  I have so few pictures I’m free to remember the trip as I like, with little evidence to confirm or dispute my recollections. I took only a single picture of a terraced farm in the Himalaya, and I’ve probably not looked at it in 25 years, but here it is. 

(photo: 1991)

If you have met one person living with Dementia . . . you have met one person living with Dementia. Every person is unique; the disease affects every person differently but I like the simplicity of the plateau-as-metaphor for the progression of Dementia, as imperfect a metaphor as it is. This is a stage. This too shall pass. When my husband was aggressive, I told myself this was only a stage, and it would pass. We were both extremely lucky - it did pass. When he suffered from horrifying delusions and hallucinations, I told myself this was only a stage, and it would pass. Again we were lucky, with medication and the passage of time, the worst of it is over. And as the Dementia advanced I reminded myself that the resulting happy moments would pass too, so I had to put aside anything else I was doing to enjoy them. Those moments.  These moments.  Right now. Knowing that everything is fleeting helps me focus on what’s truly important.  

Of course there are stages which don’t pass.  It is a one-way, downhill path; this is not a disease from which he will recover. He lost his nouns, and they never came back. His ability to read, once gone, was gone forever. One morning he couldn’t remember how to turn on the shower.  Later, he no longer recognised the bathroom. Later still, every time we returned home from an activity, our house was new to him. My heart has broken a thousand times.  

But the plateaus are a blessing too. Room to breathe, to pause. Knowing that I have time to adapt to a new behaviour before the next phase of that new behaviour. First I cooked meals which I could cut into small pieces on his plate. Then I served everything in a bowl, with a spoon. He moved on to finger foods he could feed himself, and now he’ll open his mouth and accept a bite of food as a child might. There was a similar progression using/ forgetting how to use the toilet, so by the time he needed full on help, I was ready. (As ready as one can ever be, I suppose.)  

When I was younger it was so easy for me to think “live each day as if it’s your last” - so difficult to do.  Now I’m an expert at deciding what really matters to me, right now, and what can wait. Is my husband safe? Is he loved? Is he well fed, clean, dressed, cared for? I am so grateful that I can answer ‘yes’ to each of those questions. Everything else is an absolute bonus, and if I look, I can find many moments of joy.  He laughs along with a old TV show’s laugh track.  He eats a date square my Mum baked for him, and appears to truly enjoy it. We listen to a Pete Seeger song and he whistles along. Hold on to this moment, I remind myself.  And I do. (Sometimes my inside voice rages: this is not enough!  But it’s all we’ve got. If I choose to rant, I’ll miss what little joy there is.) 

Perhaps Covid has helped many of us sort out the more important from the less important in our lives. My wish for you is that your today is filled with moments of joy - moments you can see, and appreciate, and hang on to.