So, it’s been over a year since I last wrote anything much beyond a shopping list, my signature on an official form, or, best, one of my loony letters. I knew it had been a while, but over a year seems like more than a while.
What have I been up to during those months and seasons? Learning how to, that’s what. Learning how to be a carer for dementia, how to avoid confrontation or tripping hazards; learning how to make the best of an ever-decreasing bubble within which I now live. Oftentimes the frustration and the sadness overwhelmed me, how could it not? Watching a person recede into fairyland, centimetre by centimetre, unable to converse in the old way or to expect sentient reaction to any of a number of daily happenings, is to live as a fool. Learning what not to say, what not to do, how loudly to speak or how softly, how to read a mood swing and for it not to confound are all extra demands, critical demands, demands that offer no option for escape, for the person with dementia lives both in the distant past and also in the moment. What he wants, now, will not wait, even a few minutes; what he needs help with requires instantaneous action, not, any longer, a refusal to budge, having only just sat down. The person with dementia has only his needs in his mind. He can do as little about that as I can, but the legacy of doing everything required is one to be most carefully addressed or I will turn into a whirling dervish and fly right off the planet. So, in order to remain reasonably unexhausted, I must set boundaries. Well, how dare I!! Yes, I do dare. That frightful statistic I read somewhere, announcing that 69% of all unpaid carers die before their time, is a red light indeed. So, I stop and I think whilst the cross traffic passes me by. I think of ways, clever ways, kindly ways, softly spoken firm ways to make it clear I am not an employee, nor a slave; that although I appreciate his limitations, frustrating limitations for such an active man, I am not a robot (tick this box). It is a tricky road to walk and no mistake and I get it wrong endless number of times, when I respond sharply to another interruptive demand for something like ‘lunch’ when ‘lunch’ can easily flipping well wait a minute or two. In creating boundaries, whilst still respecting that they easily become tripping hazards, I accept that they appear unfair, unkind and selfish. I will need to erect them over and over again every day till the end of time because they are oft forgot. Whilst I’m busy being firm about them, I must also make them of something soft, something easy to move about, because there are times I do jump in response, not because of a disaster in the next room, but because I cannot imagine what it is to feel that urgent need and to then feel so very upset and angry when She Who Creates Boundaries refuses to leap into her pinny? Must be awful.
As the truth sank in, the removal of a driving licence, a skipper’s licence, the ability to walk without sticks or a walker, I feared he would just sit. Not him. Of course, not him. He discovered WhatsApp and friends to WhatsApp with; he involved himself with Alzheimer Scotland, with the Scottish Dementia Working Group, and with an X Box. Yes, really. He hasn’t played much on it yet, having a spot of bother with the tv remote and control over the working thingy that sends out warriors into futuristic landscapes, but he will, one day because his spirit is still as strong as ever. I watch him battle with the clues and I share his delight when a riddle is solved. It thinks me often of a spirit strong, one that loses nothing in the demise of dementia. It is the last thing to go, as it was with my mum who died in May. I am fond indeed, of spirit and I have one myself, one that can be confounded at times as I dump a load of self pity on its head, but it doesn’t stay down for long, minutes even, rising up with a chuckle and a terse reminder that there are folk much worse off than I. Of the 60 odd unpaid carers on this island, I am among the youngest, at 65. Some of these carers are in their 80s. Now that, Dear Life, is not fair at all. I meet them sometimes in the shop and I look into their eyes as I say hallo and how are you? I know how tough their life is to a degree, but not completely. We share a joke, we chuckle, we shop and we move on. That’s spirit for you. And, as I drive home to deal with whatever comes next, I hold their face in my mind and I smile. Tough old bird, I whisper to the fluffy cross-eyed sheep that hangs from my rearview.
Takes one to know one, he replies.