The first time man walked on the moon, the whole world stopped. In fact, most of us can remember exactly where we were when it happened. Virtually the whole world walked beside him, and the excitement and exhilaration that must have been felt by the astronauts and NASA team I am sure will live(d) with them until death. Every astronaut to step onto the moon since then would feel that first time experience, and I’m almost certain, will relive it for the rest of their lives.
Our first love, our first steps, our first trip away on our own, our first bowl of roses for the spring, the first time we hold our new-born baby… these are all spectacular moments. They rarely make us feel sad, angry or annoyed. Perhaps we need to do that with our loved ones who have dementia for every moment we spend with them, especially for all the ‘first time’ moments.
I heard the term ‘First times’ in relation to dementia, from a wonderful speaker and advocate for dementia, Robyn Moore. The first time I heard Robyn present, she talked about when her mother forgot she had any daughters, and how sad and frustrated she initially felt. Ultimately she was able to be positive, and started to feel every visit as a ‘First time’ experience. Her mum used to ask her if she had any daughters, and Robyn would say with enthusiasm, ‘Yes mum you have two, and aren’t you lucky, I’m one of them!’ Her mum would then become excited and delighted to be spending time with her daughter.
Reading Kay Branford’s blog last week reminded me of Robyn Moore and her own very personal stories of living with a number of people in her own family with dementia, and although the profound grief Kay’s mum is probably going to face over and over again is devastating, the other side of the coin with dementia is the first times for all of the other events in our lives. On Thursday I went to see my general physician again for my three monthly check up, and commented on a cartoon he has on the wall. He laughed, and commented I say that every time I visit him. We laughed, even though for a few moments I felt physically sick.
We talked about the changes in the symptoms of dementia he is easily noticing, and about how I am managing them. We also talked about how, when humanly possible, it is healthier to laugh about them, than to cry too much or too often. My husband and I often say, ‘It is what is is’, as we attempt to jump back into our denial bubbles! Even though I write about living with dementia most days, I don’t let it get me down all of the time, but do find the writing is the one thing that actually keeps the sadness at bay. It is like having a deep pus filled wound; if you don’t clean it out, it infects you further. For me, writing is the cleaning out of the dementia infection.
As a carer of my father in law with LBD, I had to adapt my attitude to that of Robyn Moore’s, and started seeing everything as a first time, or at least see it as ‘the best we could be’ each time we were together, trying to filter out the sadness and somehow find ways see the joy in it. Whilst dad never really forgot who we were, I think near the end he was more confused and definitely had a lot of trouble communicating, so every time he managed to get a whole sentence out, I tried to recall the feelings of joy from when my young son was learning to speak, as a way of harnessing a positive attitude, and of pushing away the sadness. I continue to harness the joy of ‘first times’ many times a day…