Creating life with words: Inspiration, love and truth

My dear husband and I constantly discuss our days and the things going on around us, but so often now I have increasing short-term memory loss, so that often it seems like life is full of surprises. He says, but we talked about that last night, or we did that or we went there this morning. It is happening so often now it is quite disconcerting to us both, and of course we worry if this is the sign of things to come. The fear sits just behind his ever-present nurturing and loving smile, as he looks at me with increasing concern about what is happening, trying to hide how he feels as he doesn’t want to upset or offend me. He tries to make things okay by accepting quickly that I have forgotten, even though his initial reaction is one of trying to remind me of what has transpired, in the hope I will remember. Sometimes I do, but more often I don’t. I was reading an interview with Carrie Fisher, and she said of the memory loss the ECT she has had many times for depression is okay, and that she didn’t give a shit about it as it was only short-term, for the period of the ECT. I have been wondering if those of us with dementia should stop being bothered by forgetting, and try to take on that attitude, but I think it is different. It is deteriorating, it involves forgetting things daily, not just for short bursts during a treatment. It is not okay, this forgetting thing. It is uncomfortable, and annoying, and happening more often. There is another way to look at it, which I try to do every day, and just as I do now with old friends who I am occasionally forgetting, in my mind I am turning them into new friends. It is imperative my dear husband and I keep striving to be positive; otherwise we might both just sit down and cry all the time. Does this mean we see dementia as a gift? I think not, even though there are things that have happened or we have done, or people who we have met, wonderful people, who we may never have met without Mr Dementia coming into our lives. It is not funny, and it is not fun most of the time, but we have no choice other than to make the most of it, in any way that we can think of. Turning the forgotten moments into surprises is the only way we can get through some of the tougher days.

We have friends living with this hideous disease who find it very difficult to be positive, and we understand completely how they can hate it so much. We don’t like it either. Most [PWD] still find it hurtful that some doubt or don’t believe we have dementia, and don’t take into account their words might hurt us, but rather seem to feel self-righteous about saying we can’t possibly have dementia, or we wouldn’t be talking properly/functioning fully/living life to the max, and so on. They don’t see behind the scenes or the progression of this hideous disease, although we do have to remind ourselves of how hard most of us work not to show the humiliating side of the disease. They also seem not to realise they are in effect calling us liars, either to our face, or behind our backs. And we dislike that some see it as a mental illness, and some doctors only want to prescribe drugs to quiet the symptoms of the disease for some of our friends, rather than helping them [us] to deal with them in holistic ways. We dislike that we might not get to grow old together, or see our grandkids together. The only thing we can do to live our lives fully is to move on from hating it, is to accept it, and to find ways to be positive and happy and live fulfilling, meaningful, engaged and connected lives. Ways that work for us, but may not work for others. Ways that those of you without dementia may not understand. Ways that some of you with dementia may not understand. Treating something I have forgotten, as simply getting a surprise, is currently working for us most of the time as it allows us to move on from the frustration of forgetting. And as Freud suggested, maybe what we thought I had forgotten didn’t really happen?

If you are worried about whether you or someone you love has normal age related memory loss, or dementia, this site offers some good information and links to lots of articles and other sites http://mysimplec.com/2012/04/04/dementia-or-normal-aging/ The Alzheimer’s Society in your country will also have much information on their website .