My husband and children, and a few close family and friends are not too scared to face the future with me; they are willing to openly discuss the awful things that are happening, and are ahead of us, they are able to laugh and cry about them, with me, by my side. There are some friends who shut me down, telling me it is not going to happen, you’ll be okay, even when I and they know this is not true. There are days when I need to talk about it, need to talk about what is happening, the fear I have of becoming an empty shell, not even knowing who I am, let alone who my husband and children are. The thought of this is perhaps the most powerful, the most hideous. Worrying about how to put on a pair of socks or using my hair dryer, as opposed to looking in a mirror and wondering who it is, that is where my perspective needs to be. Working on not sweating the small stuff is imperative, and the small stuff for me is way different to the small stuff for those without dementia or any other terminal illness. It sometimes scares the living daylights out of me. Last Saturday I hosted a lunch with a group of special girlfriends all of us having started school together at age 5 in 1963! Most of us were in the same class until we left school in 1974/5. So, we’re getting on in age a little, or old as the kids would say, but you wouldn’t have thought so if you’d heard the laughing and giggling, as if we were still playing together in the quadrangle at our old school! We weren’t sticking kick me notes on the back of the teachers on April’s Fools day, or hiding behind the shelter shed smoking, but we were having fun! Some of us have shared flats or houses together, been to each other’s weddings, stood by each other through divorces, shared having children, lost friendships and made up again, cried together at the death of a parent or partner, and many other amazing and wonderful things. Most of all the feeling on Saturday was of love, shared moments and lasting friendship. These girlfriends haven’t held back on the sharing of their worlds, even though my own is getting smaller. They haven’t stopped talking about the sadness and grief and tears of a parent’s dementia, or how they and their family all feel about it. The sharing of their lives not only helps me more fully understand that of my husband’s and children’s pain and grief, but allows me to share with theirs, as I would have wanted to share before I had dementia. Regardless of how much more personal it is to me now, I don’t want that to stop, the good or the bad. There were no signs of stigma or shutting me down.

We shared the burden of the death of one friend’s best man. She had burst into tears at the sadness of it, and that she had to travel alone to another state to represent her family at the funeral, try somehow to support his wife and children on her own. I sat in silence for ages wondering if I had met this man. At the time of her wedding, we had been best friends, so I thought to myself, surely I was there? I sat for ages trying to remember him, and then, trying to recall her wedding. For a while, I let it go as conversations and tears had moved on. But I sat quietly thinking about it, until I eventually asked, did I ever meet him? And of course, I had, I was at the wedding. I walked behind this best friend, in the sand, and more than that, she reminded me later on I had even arranged the place they stayed on their wedding night! I am definitely sorry I can’t remember her best man, but felt absolutely devastated I couldn’t even remember my girlfriends wedding. I felt guilty and sad about it, and afraid of the future. Shock… horror… I cannot remember my best friend’s wedding! It was, at that moment, utter desolation. Later, I even had to confess it took me a while to recognise some of these friends, but that does not mean I don’t still love them or want to spend time with them. Much of the conversation was beyond me, not in an intellectual sort of way, but because I can’t remember many of the people and events they laughingly and lovingly recalled. Some of the time I couldn’t even keep up with a conversation, missing most of what was said. However, listening to it all, being part of the sharing of it now, and knowing I was there some of the time and did once know some of the people, for now, has to be enough. I did cry with them, and have again, but don’t ever want them or you to stop sharing. Even if I get to the point I cannot remember anything at all.

The photos, the stories, the continuing shared times, my blogs, your words… hopefully will always remind me I was and still am part of an exciting and loving world. As long as most people don’t shut me down, I feel I will be strong enough to get through the never-ending revolving door of dementia with laughter, but most of all with support and love and dignity. The freaking dementia is getting worse. It seems there is NO stopping it. These friends can now see it, and thankfully are willing to share it with me.  Without my husband on the day, I would never have coped. They did not know that, but we did. He was seen as the alpha male, the SNAG (sensitive new age guy), which of course he is. He waited on us, cooked the meat, cleared away the plates and even did the washing up.  He was upstairs when I needed him to mop up my first batch of tears. He was there afterwards to hold me while I howled. Recalling events from my own past, or rather, listening to them, reminds of the great and wonderful things in my life, but reminds me also of what I have lost, heightens the fear of what is ahead of me and of us, and bursts my denial bubble with a  loud and shocking bang. Without my husband and two amazing sons, and my incredible friends, I might feel as if there was and is no point in fighting on.