15th Apr2011

In it for the long haul?

by Dutchcloggie

JD is getting a steady stream of visitors. There are people here almost every day. It is nice, I think, for JD but it also breaks my day a bit.

JD is now really speaking only a handful of words every day. If we are lucky, she might just respond a with a Yes to a few questions but that is it. I am however working on the assumption that she can hear and understand everything. So I read to her, watched the DVD of Green Wing and have visitors sit and chat around the bed as normal.

My big worry is that she is able to understand everything but unable to communicate. A bit like locked-in syndrome. That would be terrible for her. I just guess how she is feeling and hope I do the right thing.

Even if her cognitive functions are deteriorating, physically, she seems fine. Her appetite is good, she sleeps well, her breathing is strong. I guess that as long as the tumour does not interfere with the brainstem and vital body functions, she could be like this for a long time. This cruel disease does not always progress in neat stages. With JD it seems to be more short, steep decline and then a period of calm where it is relatively stable. So perhaps we have just had the period of steep decline and are now entering a long period of calm. No idea. But last week I had the feeling she would not be long for this world, but this week I am feeling much more confident that there is still some time left for us to spend together.

Now I just need to think of things to do with JD.

3 Responses to “In it for the long haul?”

  • >HiMy nephew is locked-in. We have found it's a case of getting used to the fact that he may not be able to reply, but nattering on as if he was just about to. People who are not used to this talk "about" him, or "to" him but in the way they would talk to a baby (because he can't reply). But we think it's most appropriate to talk to him completely normally – this makes him happiest, as he is included in conversations, knows what's going on. One important thing is to remember to tell him what we're going to be doing, where going, time for a bath, all that. If some of Jane's visitors aren't sure how to be with her, I thought this might be helpful.Sending you all our thoughts xx

  • >I have no experience of this, but I have spent many months now with my steadily declining father. I have put together a book which I have called the 'Remembering Book". In it I have a photograph of many of the people who were important to him in his life. There is a photo on the LHS and facing it I have the words of a song that he knows. We talk about the photo and then we sing the song. Sometimes the song is a poem or a ditty. Like there is a ditty about not being wasteful that his grandmother taught to him in 1929 when he was 8. He got 3d as soon as he could recite it. I have built this book up over the last three years. You and Jane will have favourite songs. And photos. And experiences. What you and Jane are doing together here is very impressive.

  • >Thanks for the kind words and tips. Yesterday Jane had a visit from a colleague from university who massaged her hands, feet and head whilst quietly talking to Jane about uni and other things. When I entered the room later on (i gave them some privacy), Jane was more relaxed than I have seen her in ages. Her left arm and hand, which are generally tensed up and kept tightly to her body, was all floppy and soft. I was most impressed. So I have now slowed down my talking and use a softer voice. Perhaps this makes it easier for Jane to understand what I am saying.I like the idea of a book very much. It will be fun but also help me afterwards. Lucy, you are right about telling Jane what we are doing. I did not do this much but noticed all the nurses do it too. I guess if Jane's processing is slow, she ,ight feel caught out when someone suddenly pulls the covers back and starts undressing her without a warning. It is just a small way of giving someone some dignity by given them the feeling they have a choice in what is being done to them.I feel blessed that I can do this with Jane and I am learning so much about unconditional love. I am also, patting myself on the shoulder here, surprised by my own strength. I am glad that Jane has me because I think I am doing a good job 🙂

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