My Loved One can no longer manage the stairs. In fact trying to climb them, whoever is behind him helping, has become very dangerous for all concerned as he sways, staggers and freezes unable to process verbal instructions. Big gulp and time to accept that we’ve now moved on to a late stage in this ghastly, plummeting illness. And it calls for new sleeping and bathroom arrangements.
Well, we’re more fortunate than some. One of the things which attracted us to the 1930s three bed semi we moved to in south London three years ago was the spacious kitchen in a large rear extension. So the original galley kitchen gives us an extra room at the side of the house with a downstairs loo behind it. It was meant to be MLO’s office. Once he stopped doing office-y things I commandeered it as a music room. Now, as his parameters close in, it is to become his sleeping area. I hesitate to call it a bedroom because it’s rather more clinical than cosy.
Take back what I said recently about Lewisham Health and Social Care because they’ve come up trumps and provided the hospital bed I asked for. The two therapists from the Falls Service who have visited the house several times have turned out to be good advocates. They can see at a glance how serious the problem is but beds are outside their budget. Beds are in the gift of social services, apparently. Then one of them rang me about something else and I told her that I really couldn’t, under the circumstances, be faffing about with waiting lists. We don’t have time to wait. I would, I said, therefore buy a bed privately. “Give me an hour before you do that” she replied. The upshot was that she spoke to someone at LHSC and they agreed to supply me with one.
Yes, it was good news but oh golly, the implications. As my sister (who has, in the past, been more or less where I am now) hinted, once you start on hospital beds and sleeping downstairs then you know Ms Alzheimer’s and her pals have a new friend hovering nearby. He, or maybe she, has a hood on his head and sickle over his shoulder.
Second there was the issue of clearing the space. My elder son and daughter-in-law happened to be here when I got the call. They worked like Trojans to get the room ready and I was very grateful. I now have a filing cabinet in the dining room, a door behind the sofa, a desk in the guest bedroom and a piano in the wardrobe – as you do. All a nuisance – and definitely not what I would have chosen in the house I worked so hard to get as I want it – but preferable to the care home alternative which almost everyone I know now keeps murmuring at me.
Third, it is a very strange feeling when you’ve shared a bed with someone for half a century to know that now you’re not going to – ever again. It’s another – very big and quite symbolic – thing gone. I remember how upset my mother was when my father’s illness forced them into a similar situation. I didn’t understand at the time but I do now. It’s like incremental widowhood.
I’m a practical person though. For the last ten years MLO and I have shared a six foot bed because I liked the ones in, for example, American hotels. It isn’t quite as large as the Great Bed of Ware but you get my drift. I had long since quietly decided that once I’m on my own I shall get rid of it, buy something more modest for myself and make more room in the bedroom which is a lot smaller than the one we bought said bed for.
Well I’ve now brought that forward. I couldn’t bear the idea of rattling about in that huge bed upstairs by myself while MLO is downstairs. On the day that I got the call about the hospital bed I popped out, while I had people in the house to man-sit, and ordered the bed and mattress I had worked out I needed. By the middle of this month, I shall be a solo sleeper in sensibly sized bed, although I still have to rattle for a few more days until it arrives.
Clearing “our” bedroom of his personal bits and pieces – combs, photograph of his mother, bedside oddments – and taking them downstairs felt very odd indeed. So did making the upstairs bed with only one set of pillows on it, when I first did it. I must confess that I surprised myself my having “a moment” while I was doing it. The upside, I suppose is that it’s one more threshold crossed and one less to face later.
POST SCRIPT: On the very day the bed was delivered MLO was admitted to hospital where he still awaits further assessment and tests. So the bed, is, as yet unslept in. More on this soon.
