A friend is sitting under the sword of Damocles; her husband is booked in for a dementia investigation at the local hospital.
I told her about my blog and the dementia diaries. Having done which, I thought I’d better go back and read them a bit myself to warn her about anything that might upset her. The purpose of the exercise both of writing and reading them, being to demystify a disease cloaked in mystery and fear.
I was there, reading my own words for a jolly long time. I had forgotten, well, forgotten is not the right word, erased from my accessible memory is a better encapsulation in words, especially considering the subject. What I had thrown a blanket of forgettory over was the detail. I had moved myself on mentally, sweeping the awfulness to one side of me with a strong broom of busyness. Then came the broken arm and then the cancer, so my attention was drawn to the present very strongly, and the fear of all that was the dementia, overtaken by the fear of my own death and then the fear of my cousin’s death, which I think I dealt with by denial.
At the end of the dementia diaries I wrote that if I could care for someone with dementia with no ill effects, so could you. This was because throughout the disease I had come into contact with people who, seeing the dementia diagnosis, ran towards us to help and people who, also enlightened, headed for the hills at speed. I wrote that one of the awful aspects of the disease was the isolation of sufferers, who not only realised they had an awful disease that most people were frightened of, they were also about to be deserted by some of their closest friends and family in their hour of need.
Wasn’t that wonderful of me to take the moral high ground! Especially since I was about to do the same to my cousin who died.
Throughout his illness I communicated with him by email. I chose this because everyone knows an email is a non-urgent communication, at least it is if you are forty and up. Below this age most people are so wedded to their devices and the urgent requirement to text, respond, like, approve, give an opinion on and so on, that it becomes an immediate concern.
My cousin was three years older than me, so emails at our age are something you look at when you are not doing anything else and respond to when you can think of what to say, sometimes days later. If you are poorly and not up to much I would suggest this is ideal communication. Also I imagined that his wife would be at home caring for him and I didn’t want to intrude. I only found out at the funeral that she kept on working until she retired just a few weeks before he died. I rang to speak to him when my computer broke and she said ‘Go away, Jane, we are having a dinner party.’
The ancient Egyptians, whose religious beliefs have informed other religions throughout the centuries, believed that after death your soul would be weighed; if your heart was as light as a feather, you would go to your reward. If your heart was heavy with misdeeds, a fearsome beast, called the eater of souls, would gobble you up.
I have three weights upon my soul, though each has a little balloon attached. Not seeing my cousin is one. He did not suggest it, though early on he wrote that he was not well enough to travel. Just that. With hindsight this might have been him asking for a visit. At the time I was turning up in hospital regularly, apparently vomiting blood, at unpredictable intervals. This is not much of a balloon but this is what I’ve got. Of course I would love to see him now, but now I am well enough and have a diagnosis, so I can manage my condition up to a point.
I have seen this from both sides. When I was upstairs with a useless arm and cancer the OH was out drinking eight hours a day, or sleeping it off.
So what is the right thing to do if someone you know gets a diagnosis of a horrible disease? Do you run towards them, do you run away? Do you contact hesitatingly for fear of hurting you both? Do you throw yourself in unsparingly and end up ill and in debt yourself?
I think the thing to do is to be unjudgmental. A dilemma of such proportions hopefully will not face most of us often in our lives. It is impossible to predict before you are affected exactly what you will do. You only find out what metal you are made of when circumstance thrusts you in the fire.
I found myself to be an alloy. I have strong spots, I have weak spots, I am as human as you are, few of us are steel all the way through, fewer are gold.
The answer to what you should do is to do what you can at the time, and, possibly keep a diary. Then, afterwards when you are beating yourself up for not doing more, to look back and see how difficult the situation was at the time.
The other thing you can do, which I am really bad at, is to ask for help.
The thing we can all do is to learn from our mistakes, to look back sufficiently to weigh our own souls, to attach balloons where necessary. To fling a leaden weight forward into the future so we trip over it enough next time to do things differently, if we can.
You can spend a lot of time in regret, I live there some days, especially late at night when I am tired.
The things that help me are: remembering we have only today. Yesterday is history, tomorrow is a mystery, it’s called the present because it’s a gift. Wasting the gift time travelling to yesterday is not wise. Buddhists talk about acquiring skill in the business of living. You can do this by getting a great teacher or by doing the living, most of us do a bit of both, if you knew it all already, you’d be the teacher.
And, for goodness sake, get a hobby.
Weave a basket for your soul, line it with torn scraps of regret, ripped small so it looks better, be kinder to yourself to inflate your balloon. Paint pictures on the balloon, grow plants in the basket, write pretty words all along the rope and take off into a better future, with the lightness of soul to help you rise and the weight of experience as an anchor when you need to alight to give someone a lift.