Families and dementia
I often listen to my children, when they are talking about how my life changed, before the diagnosis, and it is amazing to listen to.
I was not the old father figure that they had been used to I had changed, and had turned into someone else they simply did not recognise.
I was in danger of losing my long term Job as a university College Engineer a job I had done for 28 years, a job I had also been doing for nearly half of my working life, and everything was seemingly crumbling around my feet, and I could not find a way of stopping it.
I had gone from doing Building and Electrical Estimates, Electrical Engineering work and College Budgets, to sitting counting on my fingers, all within two years, and nothing made any sense anymore.
I forgot people’s names at work, and on two occasions forgot where I was going, when I was walking to work, a route I had walked for well over 10 years. I would attend meetings and would leave having no idea what had been said.
My electrical exam papers which were in a file at home, made no sense at all when I looked at them. In fact it all looked like a foreign language, and that was distressing, but our daughter kept saying, let it go, but how could I it was my job.
Yes they all guessed that there was something going wrong, but like myself never expected anything like early onset Lewy Body Dementia, and like me they all thought it was an illness that only the elderly got. I kept saying, I am going mad.
During this time my wife had a running battle with our doctor who was adamant that I was just depressed, and my wife was adamant that I was not, as she had seen and worked with people in that condition. She then demanded a second opinion, and then things started to move, but all this was now starting to have an effect on my children as well as my job and my dear wife.
As things moved on our daughter was more engaging that our Son, but perhaps that was because she had just left University and had a degree in Biology, and could look at things in a different way.
Where our son was out of the link so to speak, difficult to get through to, but I guess that was because he either understood or accepted the diagnosis.
He has now changed and is very supportive, even though there are times when I think he is still unsure about what is going on.
After the 3 grandchildren came along my Daughter spent time discussing my problems, with them, although they struggled at times, but they are truly wonderful and supportive of me, so much so that I cannot do anything wrong in their eyes.
Anything which goes wrong was not my fault but the illness you are living with.
My daughter had problems describing the illness with the name of Lewy Body Dementia, so she chose instead to call it "OLD TIMER'S"
So now whether I like it or not, anything which goes wrong is not my fault, you just have Old Timers, Grampy.
Hard though it may be I have accepted this through the Grand Children, and try to make sure that I don't let them think I am worse that I am.
I have made light of the illness a few times, and have then come under the wrath of these Grand Children, for trying to do things that are impossible to do now.
Each time I forget something, or try to remember what to do, when I am with the grand children, one of them usually comes out as say's well, it’s your old timers, don't worry we will help you.
Leave that to us, you’re not to do it or should not be trying to do that.
Every time we go for a walk, there is a scrum, between the three of them, to see who is going to hold my hand, as it seems all three want to help in any way they can.
These children are so protective of me that it is sometimes very hard to cope with, but I know that they all mean well, its just so difficult to explain and understand in children that are so young.
There is a strong bond between us all especially between, myself and the eldest who has a mild form Asperger’s syndrome, and although we spend a lot of time together while the two youngest sit and play, she also steps aside, to let someone else have some time with me.
There is no doubt in my mind that young children are capable of getting to grips with illness like dementia, and seem to have an uncanny knack, of understanding more than adults give them credit for. Perhaps this goes back to when we were young, and were kept well away from Grandparents who had illness like this.
I used to be very proud of my spelling and grammar, but now that’s all on the way out, and I find it very distressing when I see silly mistakes. So when I spend time with the grand children doing spelling, it is very hard, but one of them usually comes out with the same old excuse, you can be allowed to forget because you have old timers, we are learning these words and have no excuse.
These people were usually kept out of sight of everyone, and in so cases they here sent into cottage hospitals or institutions where they went unnoticed largely because no one understood this illness, and in some cases many thought that those with dementia were mad.
Now we are seeing a sea of change and in some saes it is led by children, who want to know more about the illness, and although very hard to accept it is wonderful to know that it is happening.
I often look back and wonder just how bad things got at home, before I was diagnosed, because in all honesty, I don't remember. I think I was so wrapped up in my problems at the time wondering what was going on that I did not think of anything or anyone but myself.
I don't think I was capable of understanding anything at that stage, because there was very little support, apart from my dear Wife and Daughter, and that carried on until I was finally diagnosed.
Although I was under strict instructions from my daughter, never to stop and give in to the illness, otherwise she would come back home, and sort me out. While she was around she never allowed me to sit and worry in any room, but would try to keep me occupied on one thing or another, and I will be eternally grateful to her and my wife for all the support they gave.
My son these days although still struggling to come to terms with my illness, does try at times to get to know more about what is happening, but I do think that he is so emotional that he is frightened of what will happen in the end.
So in all families we all see dementia from different angles, and although it may be hard to cope with when you have the illness, I have no doubt now that it is harder for our families to cope with as they are watching our every move.
Yes this is a horrible illness, but I do think that it has brought the family together, and has made them stronger, and if everyone has Grandchildren like this, we will soon remove the stigma from dementia because it's children like this, who will remove it in the future. They will also raise the profile of dementia so that its at the Front where its seen, rather than Out of Sight.
I never thought I would see the day when I would see any Grandchildren , now I have four, and they really make life worth fighting for, along of cause with my dear wife, daughter and son