I had an interview with Ray's doctor today. This came about because he wanted to do some further investigation of Ray's condition and wanted some input from me. We had a deathbed scene last Tuesday, a two and a half hour period of Ray being only semi-conscious and that frightened us all, I don’t want that happening too often.

The doctor said there is not a lot he can do after a series of what I think could be seizures but he is calling brain infarcts now. Whatever they are called it seems there is no getting them under control. He seems to think all of this is coming from the brainstem.

The medication change he mentioned was Plavix out, high doses of aspirin in, warfarin (coumadin) was suggested but everyone agreed the risk is too great. Not sure I am happy with that one so I asked a letter be sent to the neurologist for his opinion. Not sure what the result of that will be. I would like another MRI done but not sure that this is achievable given Ray’s present condition.

Ray seemed to have a chest infection at the weekend and was again dribbling, sleepy and not at all well. Trev was there on Saturday and said he helped feed his father late in the afternoon when dinner arrived and he didn’t have the strength to pick up the spoon. Ray was given a broad spectrum antibiotic and was certainly better on Monday when he went out on the bus in the morning and to bingo in the afternoon.

I find myself clinging to hope, reading online about medication I know Ray can't have. I find myself wondering where this will all end, although we all know where, not just when. My poor old love seems to sit and look sad and not do much else now. I had hoped he would stabilize, even get better maybe but I have to acknowledge that he is nowhere near where he was six months ago. I find it all so disheartening.

I feel sometimes as if I am living with a death sentence hanging over my head. This is not so much about the death of Ray but the death of life as we knew it, life together, life with both of us having an input into it. This is exacerbated by the fact that I am still downsizing, cleaning out, throwing away what seems to be years and years of old correspondence, not just “stuff” but stuff with memories attached to it.

I am happy to have Trev and Edie and Lucas move in, I just didn’t realize how much I would hate having to clean out so much, how much I hate the changes to the way things look and where they are located. I am sure I have mentioned before that it feels like I am moving out not them moving in. It is all so silly in a way, not that I have ever liked change but surely I am a “grown up” and could accept it a little more graciously?

I visited Mum today and she is the same as she has been the past year or so. She is in her big comfy (hard to push) chair, kicking her feet, rolling up her dress from the hem up, which seems a fairly normal dementia occupation. Today she was in “church” in the biggest lounge room with about forty others so I joined her there.

The chaplain as her facility is in a wheelchair after suffering from polio as a child. She is a lovely bright, loving cheerful person and I am fond of her. She has two assistants one of whom is the mentor for the Carers’ support group at Mum’s nursing home that I try to go to each month.

This week’s meeting was the Christmas break-up afternoon tea and we had the theme “Hope and Humor” and had to tell a story from our life mentioning those two things. It was very interesting hearing what others had to say on the subject.

It is good to join with others for these end-of-year get-togethers. I am not sure “party” was the right term this time as most of us ended in tears. The changes to a loved on brought about by dementia is very hard to cope with. I wrote on Asha’s blog as part of a reply: “We only get to live life forward, from today on. We can't change the past, what is done is done. We need to come to acceptance of what was, what is and what will be.” And I think this is what our mentor was calling us to do.

I wish I had acceptance of all that is happening to Ray and I and to us as a family. As Ray goes downhill I am not the only one affected, the children and grandchildren are too. They either suffer by their closeness or by the fact that they can’t cope (as our older son can’t) and find the relationships changed by what is happening.

I always say I am lucky in those friends I have managed to keep and I had another example this week. On Monday when I came home I had a bunch of carnations stuck in my doorway. They were buds really but already had a strong and lovely perfume. It is always wonderful to receive flowers, I have never forgotten the ones sent to me from New Jersey from a friend I made here at Strokenet, the wonderful Sarah Snow.

This was the second gift of flowers I had had with no card attached. I was a bit worried in case it was a “secret admirer” as a friend of mine had gone through that when her husband was dying. Hers turned out to be a neighbor who thought she was wonderful, mine turned out to be a 94 year old friend who sent them to me via another friend as a source of color and comfort in what she saw as a dark period in my life. I thanked her and told her that was so thoughtful but asked her to attach a note next time please.

As the song says: “I get by with a little help from my friends.”