A Single Word

A couple of days after Christmas, sitting in Rosemarie's room with the main lights off, classical carols on the radio, stroking her arm and looking at her tired, lovely face in the glow of the Christmas lights draped across the pictures and TV on the wall. 

It is nearly time for me to go. She has been quiet, still recovering from the chest infection, but less distressed than previously. and the jolting is only mild and irregular. I have been chatting to her and occasionally she will chuckle apropos absolutely nothing that I said or did.

I put my coat on and tidy the room, telling her as usual that I will be back to see her the following day. I stroke her face and kiss her gently. "Goodbye my love. Sleep well and be better in the morning." 

I open the door and walk into the hallway. I turn and start to close the door, looking at her lying there. Usually she just stares into space, but tonight she is watching me. I blow her a kiss and say "Bye, my love."

She moves her head slightly and opens her mouth.

"Bye"

Unbelievably precious.

Another Christmas

Rosemarie's chest infection is still there. She has had four different antibiotics of increasing strength - and is on her second course of the last one. She has been in bed for pretty much the whole month, and often she lies there twisted and curled into a foetal position, looking sad and very vulnerable.

But the latest course seems to be making a difference at last and a few days before Christmas she started to become again a little bit more like the Rosemarie we have seen before this recent illness - pulling faces and chatting. This was a great relief because there were mutterings about her having to go into hospital for stronger antibiotics to be delivered intravenously. This was a terrible prospect for all sorts of reasons, and I spent a very nervous couple of days. In the end the doctor just prescribed a stronger dose of the same type of antibiotic.  

Like last year my son and I planned to have Christmas dinner at the Care Home, spend a few hours with Rosemarie and then go on to my daughter's house for the evening. I spoke to the Good Nurse and asked if Rosemarie could be dressed and in her wheelchair for just before lunch. The hope was that she would not tire too quickly and be able to enjoy at least some of the atmosphere.

It was a disaster.

When we arrived she was dressed but still in bed. That was ok because there was still half an hour before the planned start of the meal. We cut it as fine as we could and got her to a small beautifully decorated table in the Afternoon Lounge just when the food was due.

It was half an hour late.

By the time to food arrived she was leaning heavily to one side in the wheelchair, or leaning so far forward her forehead was nearly on the table, or stiffening her body and tilting her head back with her mouth open. We are not talking about lolling: she leans with a strength I never knew she had. It takes all my strength to move her body upright and hold her there. My son and I had to take turns - one holding her while the other tried to feed her. 

She finds it really difficult to eat. She doesn't really chew the food - more a repetitive vertical biting action. Once the flavour is gone she loses interest and just stops, leaving the food in her mouth. She has to be encouraged to swallow, and seems to find it uncomfortable. 

Christmas dinner is about the worst possible meal to give her, in retrospect. Turkey tends to be quite dry at the best of times. Brussels are slightly bitter and I don't know anyone who eats them enthusiastically. Baked potatoes are too crisp for her on the outside and too dry for her on the inside. She tolerated one sprout and allowed two small pieces of turkey in her mouth, and seemed to swallow one. A piece of potato dipped in gravy went into her mouth and came out again almost immediately. She became increasingly distressed and we hastened to get her back to her bed.

This was heartbreaking. Rosemarie has always loved just about everything about Christmas, and now it has almost all been taken away from her. She didn't really respond to the carols I played on the radio, she doesn't register presents, she is barely aware of the decorations I put up in her room (she views them with a kind of quizzical puzzlement and a slight smile) and she got no pleasure at all from Christmas dinner. 

I so wanted it to be different. 

Long month

It's been a long month.

Rosemarie spends less and less time out of bed. The staff will usually attempt to get her up at some stage but often it is early afternoon before she is awake enough, and after two to three hours in the wheelchair she is tired and leaning heavily to one side, or forward. This is increasingly used by the staff as a reason/excuse to put her back to bed. It certainly makes feeding her almost impossible, and when she stiffens her body and tilts her head back she is in danger of sliding off the wheelchair.

We thought we had found a solution. Good Nurse located an electrically operated reclining chair on another floor that was not being used and arranged to have it brought up 'for Rosemarie'. For a couple of days this was great. The chair supported her neck and shoulders (which the wheelchair does not) and although she had a tendency to hang her legs over the side she was sufficiently comfortable that there was no exaggerated leaning and it was possible to give her supper there in the lounge. 

And then it seemed the Care Home Manager found out about it and ruled that it was a shared resource and not just for Rosemarie. Even though no other resident actually needs it. On a purely democratic allocation this would mean Rosemarie would get the chair about once every two weeks. In fact, because she is not taken out of bed usually until after the other residents have been moved from the dining room to the lounge where the chair is located, I have never seen her in it since that day. And sometimes the Sex Pest is sitting in it, usually with it configured as a normal chair(!).

We are trying to get her GP to refer her to Physiotherapy who may be able to supply another one specially for her. We live in hope.

And then a few days ago Rosemarie got a bad chest infection. Coughing, distress, bubbling noises when she breathes: not nice for her.  She pretty much consigned to bed permanently until this is treated. She spends most of the day asleep, hardly eats at all and seems totally out of it when she is awake. She doesn't recognise me or anyone else.

Sometimes I try to wake her up to feed her supper. She shows no interest in the food and although she may let me feed her a small forkful she will chew it a couple of times, her eyes will close, her head will tilt, her mouth will open and most of the food will fall out. She will keep some food in her mouth for a long time - often hours - and it is very difficult to check her mouth or get the food out if it is visible. 

And as usual it is impossible to comfort her. When she is awake she will lie there twisting and grunting and occasionally coughing ineffectually (she seems to have forgotten how to clear her throat). She seems isolated in her own private world; it is like watching through a soundproof window as somebody you love is tortured.