Friday, September 18, 2015

Getting Physical

Today was another day where Rosemarie was in no condition to eat her supper in the lounge so I had to ask for her to be taken back to bed so I could feed her in a safer environment. She was leaning heavily to the left and stiffening her back and legs so much that she was tilting the wheelchair back. The care worker who wheeled her back tilted the wheelchair onto its back wheels to stop Rosemarie from sliding off the chair.

Which was what happened moments after she got to her room. I was closing the curtains and the care worker was turning round to get something and suddenly there was a thump and Rosemarie was on the floor.

She seemed physically OK although frightened and disoriented. I insisted on summoning the nurse before we got the hoist and lifted her into bed. But this post is not about that.

I was reflecting on the way home that here is yet another step change. 

The first one I remember noticing was the memory issues, which became the communication and coordination issues.

By the time she left hospital she wouldn't / couldn't walk but she could sit upright and unless you looked closely nothing seemed particularly wrong until she tried to speak or do something.

We then had a long period where her facial expression increasingly showed her anguish and her fear. I took many photos but most I wanted to delete immediately because of the pain and disorientation in her face. Images of the brief moments when she smiled or laughed became very precious.

But now we have moved firmly to a stage where her physical appearance shouts that something is wrong. The waving arms and stiff legs, the often rigid back and the tilted back head and the slack mouth... all of these seem to arrive regularly late afternoon if not before, distressing both of us and causing practical difficulties.

She is getting stronger. And I don't just mean she is getting back to her original muscle tone. If she decides she wants to stiffen her leg it takes all my strength to bend it (which I have to do to keep her remotely safe on the wheelchair).

I don't want to look ahead, but I am sure there are more painful milestones waiting for us.

Tuesday, September 15, 2015

Update

As happened when Rosemarie was in hospital, the days seem slow and empty but go past quickly and tiringly. Not much seems to change really but paradoxically the changes seem significant.

Her body twists and stretches a lot. In the wheelchair her legs are often stiff and unmovable, unless they are padding on the floor as if she was walking. Her back is usually rigid and her head is often tilted back with her mouth open. If she is not rigid she is leaning heavily to her left, with her hand grasping the wheel or her arm bent up behind the chair back in a half nelson. All this makes feeding her very difficult.

She seems very tired. Since last Wednesday she has spent almost all the time in bed. It started when she threw up her breakfast. She was still in bed but they got her up and showered her but she seemed so tired afterwards they put her straight back to bed. They checked her vitals and found her blood pressure was very low (78/60) and called the doctor and me. The doctor rang back and just said to keep an eye on her. She was too tired to eat lunch and slept through till supper arrived at 5. I was sitting next to her for several hours and she looked exhausted, jolting severely. She hardly ate any supper and apparently slept through the night. Her blood pressure was back to normal the next day. Good Nurse discovered Rosemarie had not opened her bowels for nearly a week and prescribed a laxative. It certainly seemed Rosemarie had quite bad constipation and seemed very distressed.

This tiredness continued through the weekend and yesterday was the first day she was up and in her wheelchair. That didn't happen until after 1.30, and by 5.30 she was ready to go back to bed. 

This somehow feels like a permanent change but I have a long history of being wrong about these things.

More than ever I feel the frustration of not being able to talk to her. It is agonising to see her twisting and writhing on the bed or in her chair and not be able to find out what is going on. She is on permanent painkillers and does not have a UTI, but something is making her distort her body.

Sometimes I feel I am trapped in one of those Action movies where they force you to co-operate by torturing the person that you love.

I desperately want to co-operate.