This is my first year with Ray in the Nursing Home; he went into care in September though he actually left here on 13th June to go into hospital. I wrote letters in all the Christmas cards to say what had happened, where he is, what I still do for him etc. I was not surprised when the cards came back addressed to me as only my name was on the back of most of the ones I sent out and I finished "from Sue" or "love from Sue and Ray" as I think Ray would express that love if he could. He really can’t now as he is more and more showing signs of being locked in.

I go to visit Mum and I know she is locked in almost completely now. I took Lucas to see her yesterday and I could see he was uncomfortable as certainly she and the people in the lounge room with her are all close to death, sleeping, moaning a little in their sleep etc. We did wheel her off to “church” which is held in the main lounge room and shared with the hostel people. There are usually about fifty there and the little chaplain who is disabled herself and comes in in her powered chair does a very nice service.

Lucas asked me if my Mum understood any of this and I said we really don’t know. I know she can still hear and occasionally tries to communicate with me. Lucas told his Mum: “It was so sad, her mother was trying to communicate with GrannySue and she couldn’t, isn’t that sad?” And it is very sad indeed.

When I visit Mum now she is mostly always curled up in her comfy chair. She and two of her room mates are shifted out of their room as soon as they are up and dressed because the fourth, a younger woman, screams out and swears a lot which disturbs the other three. Mum mostly has no responses but sometimes does her mutter, mutter talk, almost under her breath, not always sleeping as she may have some very short periods of alertness. She still opens her mouth and swallows food; she still drinks, though more like a baby sucking now. She responds to sounds, particularly music and to some light stimulus, which is about all her reactions now.

She and two of her room companions in her Nursing Home four share room are at the same stage so when I arrived early in the week for a visit all three were side-by-side in their comfy chairs in one of the lounge areas sound asleep. They really looked like three babies in bassinets, all curled to the one side.

Mum has had a few near death experiences over the past two years but one day will die of close to natural causes I should think. It is all in God’s timing but for those of us waiting here on earth this journey of Mum’s with Alzheimer’s seems to have lasted a lifetime.

I've already been called to Mum's bedside a few times when according to the nursing staff or a doctor she was definitely dying but there she is, still going. I don't have any hang-ups about death, in my volunteer chaplaincy I often sat with the dying. I guess when it is actually your own Mum and you sit for hours and hours watching the person you love gasping for breath or receiving what is obviously going to be their last medication it is more difficult than sitting with a stranger.

Mum has been through the "scattered thoughts, scattered language, shuffling walk and bedraggled appearance" stage. She has been through the "muddled, mumbling, hardly walking, falling down" stage. Now she is clean, tidy and mostly sleeping, I think a visit is much more painless for me, sadder of course too to think I am missing that last stage much more than I thought I would and longing to hear her voice once more.

Mum is beyond needing to be protected even as no-one wishes her ill or is likely to want to harm her. The nursing staff is in a routine with her and just sees to her most basic needs, for her to be washed, fed, kept clean and dry, sitting or laying out in her comfy chair. She is fed pureed food and thickened drinks. It is strange that in a way her life now is so peaceful. I would not have imagined it would be so with so many stormy passages behind us.

It has been a long, long journey with Mum and sometimes I have prayed that she does go to sleep and not wake up but she obviously has a strong heart and she is waiting for something to signal the end for her, maybe that “gathering of the angels” that some people see at the end of the journey.

Emotionally I do feel like a widow and an orphan. I visit Mum in her Nursing Home, I visit Ray in his. I can't look after either of them alone in the stage they are up to so that is another fact. I try to be realistic about what is happening and reach some kind of acceptance of it.

My official status is married, separated due to illness. That is why we each get a single pension now. The fact is the factor here. And of course I am not an orphan; my dear Mum is still alive. With the Christmas season here though I do feel lonely and very bereft of companionship in both cases but that is to be expected at this stage, everything is so new and emotions are still raw about the needs Ray has now that have separated us.

Despite all of this I am still trying to organize a “Happy Christmas”, Trev, Edie, Lucas and I are having Christmas lunch with Ray at the Nursing Home, then Shirley and family and Steve and his children will join with us for a sit-down Christmas dinner. Trev, Edie and I will spend a lot of the afternoon cooking but that is part of the fun too.

Happy Christmas to you all from Sue, Ray and family.