These days we hear all about dementia champions etc., but never much about the caring champions.
Caring for anyone with an illness or serious injury can be difficult and at times very hard to cope with.
But when someone with dementia gets a diagnosis, it is commonly sad the they family start to grieve as the person they are looking after will change in time, and will not be the same person they have grown up with and loved.
I confess that it’s bad enough having the illness and trying to cope with whatever life throws at you. But our caregivers mean so much to us, and have so much to put up with over the years.
Our caregivers are not just our partners in this illness, they are in many cases someone we married many years ago, and we agreed that we would stay with them in sickness and in health, until death us do part, as said in the marriage vows.
Yet thinking about it now, I know that I may look like the same person Janice married years ago in 1972, but when I stand up to do something or same something, I become a vastly different person. As my dear wife has said on many occasions, I am not the person she married all of those years ago.
But having said that I confess that I cannot get near to imagine, what she goes through on a daily basis.
Her role as my carer or care giver has changed from the one she was used to, and that was being my loving wife. Yes she still is my loving wife, and I would not change her for anything in the world, nor could I do without her as she is my rock and support when the wheels come off. But her role has changed so much, and it hurts me at times
This illness has changed me in many ways, the way I think, and my personality have all changed since the diagnosis. Yes a person with dementia looks quite normal from the outside, but we have changed inwardly, and sometimes we don’t appreciate or understand these changes. It’s as if the brain is now controlling me rather than the other way round.
For years I was my own person and proud of it, I did not need to be protected nor did I want people telling me how to do things, or doing it for me.
I was an engineer and did estimating, costing, writing reports, as well as doing budgets, yet that is all but a mere memory, and these days its very confusing looking at figures and letters, trying to understand what things mean.
Yes I did what I wanted to do, the way I wanted, but now, I have to work things to suite others and that can be upsetting.
I was secure and felt strong, yet now I feel very insecure at times.
Now I find myself more and more dependent on others in the family, and that includes my big champion my dear wife.
As prominent person with dementia in America (Dr Richard Taylor) once said, I am not sure whether my wife is my champion or my hero.
Heroes are shared with others.
Champions are more personal.
Heroes are worshipped from afar.
Where champions generally embrace the values and feelings of those they champion.
With heroes is usually the other way around.
So perhaps in many ways Janice is my personal champion, and that means quite a lot to me.
These people are our personal champions, our Hero’s although we normally speak of Hero’s being someone who is shared by many people, but I do think my wife is my Champion as she cares for me, and helps me feel more secure, no matter where I am, and like others she looks out for me all the way through the illness, and supports me when I get stuck.
They are sometimes our personal driver
Our personal Secretary
Our travel booking agency, and travel companion
Our personal nurse who sorts out our daily care and medication
Our personal handy person, when we forget what we need to do.
Our Gardener when we are unsure
Personal Cheerleader, yes because without them constantly saying we are doing fine, we would simply give up.
My Financial manager
When I am attempting to write a talk, she usually checks it and edits it, because my brain goes faster than my hands, and I end up missing words out, or sections just seem to disappear and things don’t sound right.
Janice sorts out the washing machine that is too difficult to work out, and iron our clothes so that we look clean and tidy when we go out.
I use to enjoy ironing but now, I get the creases in the wrong place most of the time
Theses loving people must get frustrated by us asking the same questions over and over again.
Do they trust us to do anything without making a total pig’s ear of it?
Janice has protected me throughout, but allows me to do what I want, within reason, in the hope, that I will realise what it’s time to hang up my boots and stop doing certain things. It’s a very slow and hard process doing this.
It’s very hard to accept defeat or ask for help, and I guess that’s just a man thing, Never Admit to being unable to do anything, as it makes us look foolish.
But to be honest I feel we are only fooling ourselves, and there comes a time when we have to say enough is enough.
Everyday has to be a drain on her, as we are no longer the team we were, working together to build a good life for us both and when we worked together to achieve our aims, now she has to do most of this work herself, because she usually ends up correcting the things I have attempted to do on my own.
I am now more dependent on Janice than I ever dreamt of, and if anything were to happen to her tomorrow the world would all end for me.
A few years ago she fell and broke her ankle, so I was upgraded to chief, cleaner shopper and driver. I don’t usually go near to the car these days unless she is there, even though I have driven thousands of mile in my life, I no longer feel quite at home in the car any more and won't get in to drive unless she is with me.
But I could not have done the shopping without her being on the end of the mobile phone. Where is this usually found, what kind of this or that do we use, and what does it look like, all of which must have driven her up the wall. It was a terrific drain on me, let alone poor Janice, but in that instance our roles had changed.
But when you have an illness like this, shops become a nightmare place where we don’t like being, because some buffoon keeps moving the shelves and their contents around just to confuse us.
As well as negotiating all of the different aisles with thousands of things on, and we are trying to work out where each item is, we also have to watch for all of the mad high speed idiots with the trolleys, the rows of storage trolleys waiting to be unloaded, as well as the staff who now pull full trolleys towards you while walking backwards. It’s all mind blowing to us and very confusing.
So yes I would be lost without my personal champion