The Ground Beneath Your Feet

For the last few months I have been taking Rosemarie to physiotherapy sessions every Tuesday afternoon. This has only really been possible since we got the regular wheelchair and the smaller reclining chair; the original recliner was far too big and unwieldy. 

The physiotherapist is a pleasant, garrulous Brazilian who has worked at the Home for many years. When Rosemarie was first there (and could still stand and walk with assistance) I tried to schedule individual PT sessions for her but it didn't really work out. She was allocated a 15 minute slot but was only rarely awake enough or co-operative enough for it to achieve anything. After a while we stopped trying.

But then I found out there were group sessions every Tuesday for an hour (well, 15 minutes physiotherapy and 45 minutes of the PT talking about everything under the sun) and so I started taking her myself.

It is all pretty basic stuff, mainly standard chair-based exercises. Rosemarie needs assistance to do them and usually resists me moving her arms and legs because she doesn't understand what is going on. From time to time she cottons on or stops resisting for some other reason and is able to release the tension she has built up in her muscles with sometimes evident signs of relief. She spends so long with her arms and legs tensed and twisted that it must be a pleasant change to relax the muscles.

Usually I take her in the wheelchair, which has a footbox to contain her wandering feet, but last week the PT suggested we try her in the reclining chair, which has an electrically controlled footplate. His thinking was that it was months if not years since Rosemarie had feld solid ground under her feet and maybe some of her restless foot movement was consciously or unconsciously seeking this sensation. 

So this Tuesday I took her in the reclining chair, and when we tilted it as far forward as possible and lowered the footplate to its fullest extent she was able to touch the ground with her feet. At first it was dainty tiptoe touching, like she was exploring it, but after a while we noticed that her feet were flat on the floor and the restless movement seemed to have stopped. It is difficult to read her reaction, but it seemed positive, especially given that she was actually tilted forward and although I held her arm firmly it must have felt quite precarious. 

She stayed in that position throughout the seated exercises, with no signs of distress.

The seated exercises are followed by assisted standing for those who are capable. In the past we have never tried this with Rosemarie for several reasons: her leg muscles have shrunk dramatically through lack of use, there is a residual paranoia at the Home about her falling, and her wheelchair's footbox makes it impossible anyway.

So the PT suggested we try anyway, since she was now in the reclining chair, her feet were unrestrained by a footbox and were at this moment flat on the floor. We got either side of her and told her what we were going to do. No reaction - but I didn't expect one. We hooked our arms under her armpits and eased her weight forward, encouraging her to stand.

And she did. She needed help and for most of the movement we were taking her weight, but there was a definite co-operation in the movement. She made a sound like a tremulous moan, and held position with our help for about three seconds before her legs gave way and, taking her full weight, we lowered her carefully into the chair. There was applause and encouraging comments. That was the first time she had stood on the floor for probably a couple of years.

We tilted the chair back so she could completely relax. Her face was totally unreadable but somehow....busy.

I don't seriously expect her to stand for long let alone walk again, but I think the PT was right and she did enjoy having her feet on the ground. Somehow I was still smiling as I drove home several hours later.

We will see what happens next week. 

Reading Faces

I spend a lot of time looking at Rosemarie's face.

Looking for clues to how she is feeling, what she may be thinking, or what in her environment she is aware of. 

Like most long term couples we became very familiar with each others' facial expressions, and enjoyed (usually) the subtle communication of micro expressions and the sense of intimacy that brings.

Seems so long ago now. 

There are still expressions of course, it is just that most of them seem to be in a foreign language or belong to someone I do not know. 

For a long time it was a medicated slackness with drooping lids and loose lips: classic lights on but nobody home. Then we stopped the Clonazepam and there was more aliveness, but also worrying signs of possible stroke as the right side of her face drooped slackly. One eye would be shut and the other only half open. 

Then we had a period of several months where she lost definition in her jaw. It hung loosely and her lower lip parked itself behind her top front teeth. Feeding her became difficult and increasingly messy. She looked increasingly disoriented and distressed, and trying to read her face was a heartbreaking activity.

Over the last few weeks there has been a change. She is very sleepy after lunch, and sometimes does not wake up until nearly supper time, but when she does her eyes are wide and clear and she makes strong and purposeful sounds. 

She still shows no signs of recognising me except as another being: the care workers get a lot more smiles than I do. But I get the impression from watching her closely that something is going on, in her deep lonely world, that is maybe not quite as frightening as it used to be.

I am not going to fool myself with hopes that anything is getting better, but maybe it is getting different.

Christmas Present

A hard time of year.

I had decorated her room with coloured lights and tinsel. There were Christmas cards from friends and family scattered around the place and Christmas Carols playing almost continuously on Classic FM. 

No discernable reaction. 

Christmas Day has a warm and loving feel at the Care Home, and again my son and I were there for dinner with Rosemarie. She was dressed in her party clothes and in her chair when we arrived. She fell asleep and remained asleep through all of dinner.

Our dinner as usual was excellent. Hers....well, pureed turkey is dry and tasteless, pureed parsnips and sprouts pretty uninteresting, and mashed potatoes. I don't think she missed anything.

Back to her room for presents she was totally oblivious to, and a Queen's Speech she used to watch but now ignores.

I thought I would be getting used to it by now. Maybe it was the contrast with the busy and exciting atmosphere at my daughter's house, where my first grandchild was overwhelmed by her first Christmas and wine flowed and laughter echoed.

But for me: Christmas with the heart ripped out. 

Arming The Peasants

The New Nurse had a hard time of it at the meeting on November 4th. Discussion of the new chair inevitably led to discussion of its use. I had already primed the OT with my concern that Rosemarie was being left in the chair for extended periods and if moved from the chair it was to the bed and she was likely to stay there for the rest of the day. I asked her to bring this up in the meeting and lay down some guidelines, which she duly did.

It was quite simple really. She should not really be in the chair - any chair - for more than three or four hours. At the end of that time, or earlier if she shows signs of being uncomfortable, she needs to be moved. It doesn't have to be to the bed (although it should be if she looks tired) it can be her other, outside wheelchair. A change is as good as a rest. Even briefly moving her to the bed to check and change her pad and then hoisting her back to the same chair after a few minutes rest can relieve her discomfort. Indeed, there will be times when she has not been in the chair long but looks uncomfortable and all that is needed is for her to be repositioned either by lifting or hoisting. 

That's not too difficult is it?

Apparently it is. I have had interactions with New Nurse (and others) before on this topic, and hit the same wall. Everything must be documented. Initiative is to be discouraged because monitoring it requires too much management time (and by implication at least some staff cannot be trusted to make the correct decisions).

I suppose it could be created as a decision path and programmatically it would look something like this:

if Rosemarie is in the chair
      if she has been in the chair for four hours or more
            if she looks tired
                  move her to bed for an hour
            else
                  move her to a different chair
            end if
      else
            if she looks uncomfortable
                  try adjusting her posture
                  if she still looks uncomfortable
                        try another chair or put her to bed
                  end if
            else
                  leave her where she is
            end if
      end if
else
      if Rosemarie looks sufficiently rested
            hoist her into a chair
      else
            leave her in bed
      end if
end if

It could also be created as a flow chart. The point is, any attempt to document the process makes it seem more complicated than it actually is. I trust most of the staff to make the right decision in a perfect world, but therein lies the problem. In a world of limited staff resources rigid procedures are a way of ensuring a certain standard of care. Initiative can all too easily result in making a decision that is in the best interests of the staff rather than the best interests of the resident. 

New Nurse struggled in the meeting and afterwards to come up with simple procedures but it has proven very difficult. The OT suggested that a record needed to be kept of movements between chair and bed and also tilting when in the chair and moving position when in the bed. Miraculously the day after the meeting a form appeared in her file to record this, and so far it seems to have been used correctly.

This is a good sign. I have plotted the data on a spreadsheet and it shows the random pattern which could be consistent with decisions being made based on need, but also shows graphically when she has been in the chair too long. It will be used in our next review.

The title of this post is not intended as an insult to the care staff but a quote from an amusing and thought-provoking book Writing on the Wall: The Campaign for Commonsense Business by Geoff Burch, which I heartily recommend. One of his points is that if done intelligently devolving decision making to front line staff and encouraging initiative brings far more benefits than risks.

More Chair Again

I can't believe how  long it has been since I last updated this blog. 

Is how I planned to start this post. But the truth is I realised some time ago that I was way behind but I seemed to lack the energy and the longer I left it the bigger the mountain got. So. Here we go.

Rosemarie is OK. 

She is in a better chair. She seems to be maintaining her weight. No chest infections or UTIs. Didn't really know anything about Christmas. Making sudden startled sounds and occasional jerky - almost violent - movements...but not like the jolting we had before. Her face has changed.

Well that's the helicopter view.

Let's start with the Chair.

Big sigh. This has been agonising. I foolishly thought that if I could get all the parties together it would get resolved and we could move forward. Everyone claimed to have Rosemarie's interests at heart so it should be easy, right?

The Salesman, in response to the letter, came in to look at the chair again. He lowered the arms and forced the lateral supports slightly further in and pronounced the chair perfectly suitable. I said I still wanted to involve the OT because she was a professional. The Salesman stated the he was a professional too and had been doing this for fifteen years. I said that I thought the assessment of whether the chair was suitable should be done by the OT Rosemarie had been referred to. No, he said, it was my decision. By which of course he meant I should listen to him. I insisted and he was plainly not happy.

The OT wanted the meeting late afternoon when Rosemarie had been in the chair for a few hours (as usually is the case) rather than an early meeting when she would have just been transferred to the chair. The Salesman was  not keen but agreed in the end and the meeting was set up for 4 pm on November 7th.

It was pretty crowded in Rosemarie's room. I arrived early to make sure Rosemarie was up and in the chair, but by shortly after 4 we were joined by the OT, her boss, the Care Home Manager, the Care Manager, the Salesman and New Nurse.

The OT and her boss were adamant that the sling was wrong, the chair was too big, and Rosemarie was at risk of slipping out. The OT Boss was particularly concerned with the way Rosemarie's left foot pressed hard against the side of the footplate as she slipped down. 

The Salesman continued to insist there was no problem but was gradually losing ground. His solution seemed to be to tilt the chair right back so Rosemarie couldn't slip down, though this didn't prevent her from twisting uncomfortably. The Care Home Manager asked about the chair that the OT had recommended (Hydroflex) and she gave the details.  The Salesman had never heard of it but wrote down the name.

The conclusion of the meeting was unsatisfactory. The Salesman would go away and 'see what could be done' about the footplate and narrowing the chair. He would not commit to a timescale or a solution. The OT and her boss were not happy. Neither was I.

There was also extensive discussion about how long Rosemarie should be in the chair, which has caused no end of repercussions (of which more anon).

A new sling (the one specified by the OT) turned up within a couple of days but there was no word from the Salesman and days turned into weeks. The Care Home Manager said she was regularly emailing him with no result.

An then in early December the Care Home Manager told me that the Salesman had turned up with a Hydroflex chair (which as far as we knew his Company didn't sell) but she did not put Rosemarie in it because it was missing the lateral supports. The Salesman was asked to source some. 

December 14th they turned up, and Rosemarie was hoisted into the chair for the first time. She seemed instantly more comfortable and it was clear the size was much more appropriate. I am still happy with it with three reservations.

The first is the way her head is supported. There are wings but they are quite small and nor even really designed for leaning on. Instead she has a firmer version of those V shaped airplane pillows attached by velcro to the chair. This is ok when she is fresh and strong enough to hold her head upright, but as she gets tired or if she decides to lean, it provides no significant support. There is action planned to address this.

The second is that she still twists and slides to some extent. I have noticed since this marathon began how often I adjust my posture when sitting in a chair, and I am rarely in a chair for more than an hour at a time; she regularly spends three or four hours at a time in the same chair -  often significantly longer. The only movement available to her is to twist her hips. Her arms and shoulders are not strong enough (and she probably doesn't have the co-ordination) to shuffle up the chair so the only way is down and this inevitably leads to one of both feet coming off the footrest. This has been a source of.... discussion. Of which more anon.

The third is the fact that the chair swerves to the left like an irritating supermarket trolley. The Care Home handyman has had a look at it but can't see what is wrong. It requires considerable strength to steer in a straight line - it is possible but not easy. Ongoing problem. The Salesman has been told but for some reason has not turned up to look at it.

I spoke to the OT and shared my joy and concerns, and she rapidly arranged to visit the Home with a rep from the Company that manufactures the chair - not the Salesman. She pronounced herself a lot happier with Rosemarie's posture and comfort. The Rep had brought with him an alternate head restraint that provided more support. Unfortunately it was the wrong size for the chair so we couldn't try it out, but I have decided to ask the Home to get one to evaluate. It might be too restricting to use all the time but might be useful on those occasions when she leans heavily and the staff are worried about her 'falling out of the chair'. 

So, the saga grinds on.