Sad But Beautiful

A scattering of memories sharp and clear like shadows on a sunny winter's day:

Standing waiting for the hearse, wearing as little black and as much purple as possible. My first granddaughter trotting happily up and down the path in a dress like a bridesmaid's.

The arrival of the hearse and limousine: solemn faces, top hat and cane. Glimpses of the pale wood coffin under a sea of flowers, a photo of Rosemarie leant against the coffin facing out the back window, smiling.

Climbing into the limousine and  suddenly it all becomes very real. Coasting along behind the hearse through quiet suburbs looking through tears at the photo of Rosemarie looking back at us, smiling.

The sedate arrival at the Crematorium, drawing to a halt in front of a line of serious-faced friends and family. They went in to the strains of Bette Midler's The Rose, as the pallbearers eased the coffin from the hearse and led the family through the doorway.

The Celebrant doing the introduction and opening address, then Celia reading a eulogy to Rosemarie's life working with children. Tears coming with the memories, an aching sense of loss with the words.

Then my son, my daughter and me reading poems we had chosen: not quite daring to look up from the sheet of paper, engulfed in a sea of emotion. Hardest thing I have done for years.

Jacqueline Du Pre's peerless rendering of St Saën's The Swan soaring hauntingly through the silent crematorium as everyone reflected on Rosemarie's life.

The tribute, then a closing poem read by the Celebrant, and the closing words and committal.

The curtains closing with a whisper of finality.

The opening strains of Always Look On The Bright Side Of Life.

*

The cremation ceremony was sad and very emotional - there was no way it couldn't be - but we tried as hard as we could to make it how she wanted it. Everyone was invited to wear bright colours and quite a few people did. The music and the poems were as far as possible positive and life affirming, and the tribute had some jokes.

The viewing of the flowers started to loosen people up and by the time we reached the pub the celebration she would have wanted had truly started.

There were people she had worked with, people whose children she had minded, family and friends of decades, and most of these people had never met before. I had compiled a slideshow of pictures of Rosemarie from babyhood right up to the point where the first stages of the disease showed in her eyes. This ran on a loop in the area of the bar set aside for us and attracted a lot of attention; it showed a different side of her to most of the people there.

There was food and a free bar and a steady buzz of conversation. People mingled and shared their memories of her, and everywhere I went there was a feeling of warmth and love.

Just like she was there.

Empty Time

I couldn't write for a while. It has been a heavy but empty time, though I now feel I can bring things up to date.

I pressed the buzzer to summon a Care Worker because I didn't trust myself to go walking in the corridor. I could have pressed it twice to indicate urgency but there didn't seem to be any point.  My son was a hero and went to call my daughter: I could hardly speak.

They came and washed her and dressed her in some bright clothes selected by my son, and for the first time in probably a couple of years she lay straight in the bed. They brushed her hair and wedged a cushion under her chin so her mouth didn't hang open while rigor mortis set in. I just sat there like a zombie.

My daughter, son-in-law and granddaughter arrived at 1245 and there were a lot more tears. We then began the necessary torture of phoning round to let people know.

Care workers and nurses from all floors started coming by to pay their respects and, usually, to give a hug. It became very clear how Rosemarie had touched their lives with her smiles and her gentleness. It was very moving.

We had a long wait for the doctor to arrive to certify her death, and this magically became a healing time and we all sat in her room talking and remembering. It was helped by my granddaughter, barely a year old, trotting around knowing nothing of death and loss, continuing to explore a room she had started to know well. On all previous visits she had been constantly encouraged to give Rosemarie kisses and she plainly thought this time was no different. She pointed at Rosemarie and made kissing shapes with her mouth. So we let her. Again and again. It was beautiful.

It wasn't until after 6 p.m. that the doctor arrived to certify the death, and only then could the Funeral Director be called. They arrived an hour or so later.

There was something cold and final about Rosemarie's body being removed from the room where she had spent most of her time for the last three years. The room seemed to have an extra sense of emptiness.

We said a few goodbyes and made our shocked way back to my daughter's house. 

*

I stayed the night at my daughter's house, and most of the following day. I don't remember much about it. We must have eaten something, and we certainly talked about the funeral arrangements: it was like my brain kicked into action without keeping me informed.

There were lots of things to start off but the first week seemed to crawl. Monday was about clearing out Rosemarie's room at the Care Home. We had a week but I wanted to get it over with; her stuff being in the room just felt wrong when she was no longer there.

Tuesday was about picking up the Death Certificate from the Doctor's Surgery, and starting to compile the list of people to invite to the funeral and the subsequent celebration, and starting to contact anyone on the list who had not been told.

Wednesday was about registering the Death, and an introduction to some of the problems I might face. I had lived with Rosemarie for 37 years and fathered both her children. All the utility and council bills were in our joint names and everyone knew us as a couple.

Apart from the state. I was nothing. Forms had check boxes for Spouse and Civil Partner, but nothing else. I was reduced to merely someone who knew her, and the Deputy Registrar informed me that if my son and daughter had not been with me she would not have allowed me to register Rosemarie's death. She also argued about my address, claiming her local authority postcode software was accurate and the Post Office one wasn't.

Thursday was about meeting the Funeral Directors and planning the Funeral in detail. We had discussed this at length, and since a member of the extended family had in the past run a funeral business, we had received plenty of good advice. They were lovely, helpful people and the meeting was not as stressful as it might have been. Because of the Bank Holiday weekend the first available date for the funeral was 13th June, nearly three weeks away.

Friday was the beginning of the process of officially notifying agencies and banks and so forth, making phone calls, filling in forms and sending out documents. It quickly became clear that nothing much would happen without Probate so I was plunged into the bureaucratic nightmare of form filling and guidance notes associated with that.

*

I had problems with the internal alarm clock that kicked in every day about lunchtime warning me to stop what I was doing and start getting ready to go to see Rosemarie at the Care Home. However busy I made them the afternoons felt wrong. 

But of course the biggest thing was just not seeing her any more - even the sad, damaged shell she had become was a link, however tenuous, to the woman I loved. There was no hope - there never really had been - but there had at least been physical contact: a hand I could hold and a forehead I could kiss. Gone now.

She Is Gone

At 11.30 a.m. on Saturday 20th May 2017 Rosemarie died.

The greatest love of my life, the light of my world extinguished, opening a hole which filled rapidly with the darkness of loss and sorrow.

I had thought that with three years to get used to the idea of her dying it would somehow not be so bad, but it made no difference in the end. I wept uncontrollably, buried under an avalanche of sadness. 

*

My son and I had taken shifts overnight. I slept from 9.30 p.m. Thursday until 3 a.m Friday in a spare room provided by the Care Home. By 3.15 I had taken over and my son went to get some sleep. He said that not much had changed; she had been given an injection of glycopyrronium  at 2345 and the Glandosane spray at 2 a.m. Other than that he had kept up swabbing her lips and gums regularly.

It was quiet and peaceful. I sat in one of the world's most uncomfortable chairs and held her hand gently. She was tilted almost vertical in the bed and her head slumped down and to her left. Her breathing was laboured and rattled increasingly loudly, a sign she was due some more Glycopyrronium. 

Dawn slowly stole in through the window and the dawn chorus began in the trees outside. A shaft of sunlight crept across the wall by her bed. 

At 5.15 the night nurse came with the next glycopyrronium injection. Rosemarie did not respond in any way. The nurse left; the room seemed incredibly calm and intimate. Her breathing slowly quietened, but was still shallow and laboured.

At 6.45 two care workers came in to check her pad and change her. This seemed pretty pointless because she had not eaten or drunk anything for nearly 72 hours. They thought it might 'freshen' her...

This involved flattening the bed, and as she became horizontal her eyes opened. There was no movement of the eyeball and no sign of her seeing anything, but nevertheless it was nice to see her blue eyes again for the first time in three days. The manhandling distressed her though and I was glad when they had finished changing her. They sat her up again and her right eye closed completely and her left eye half closed.

Strange things started happening to her temperature. Her face and neck and left hand became very hot, but her forearms had goosebumps. I started cooling her with wet wipes run under the tap, with limited success. Then her temperature would go down for no apparent reason, and then shortly go up again.

Time started to speed up as the place began to stir. The shift changed and the new nurse popped her head round the door.  

I was offered breakfast and I suddenly realised how hungry I was so gratefully accepted. I ate baked beans and fried eggs with one hand while holding Rosemarie's hand with the other. 

At 10.15 my son returned from his sleep and I updated him. At 10.30 the nurse called in - the nurse had changed, for some reason - and I asked for some of the paracetamol pessaries in the hope it would bring down her temperature but he didn't think it would help. I asked for some flannels because I thought they would be kinder to her hot skin, and another dose of the spray. I could moisten her lips and gums but whenever I attempted to moisten her tongue or the roof of her mouth she would clamp her jaw firmly round the swab and it was very difficult to get her to release it. 

He returned a few minutes later with the flannels and the spray. We talked about the non appearance of the pump and agreed that if it had not arrived by 12 we would start the morphine. 

By 11.15, after lots of application of wet flannels, her temperature began to come down. Both her eyes were open again, but she was not blinking and there were no tears. She was slumped against the pillow and I was worried that she would touch her eyeball against the material. I held her hand and stroked her face.

Her breathing became  more shallow and quicker, and every ten breaths or so she would stop breathing for a couple of seconds. I was holding her hand and telling her how much I loved her and how she wasn't alone. 

She took a shallow breath, held it, and then, with a quiet grunt, was gone.

*

Having won, the horrific disease released its iron grip, and the muscles of her face relaxed, her contorted features flowing into the calm peaceful expression of the woman I had loved for so many years. Her brow cleared, her eyebrows relaxed, and her mouth untwisted.

My son and I held each other as the tears flowed. After a while I tilted the bed back and my son went outside to call my daughter. 

I leaned over and kissed her forehead, and my world filled with an emotion too big for words.

Long Overdue Wake Up Call

I have been acutely aware of neglecting writing anything.

This is partly because there was not much to say. Things were happening of course: petty problems, misunderstandings, various frustrations. But it really felt like a bad soap and I was being petty moaning about things: the Care Home is a lot better than most and the staff are generally dedicated and caring. 

But I still felt bad, and tried to rouse myself to pick up the threads. This is one of the other reasons: I am feeling more and more drained and weary. I made a big effort to shake myself out of it. Loaded the blogger application last night and spent half an hour looking at the blank page before going to bed.

This afternoon (Wednesday, which is now yesterday as I write this) I got a call from the Care Home. Was I coming in? Yes, why? Rosemarie had vomited again (I will catch this up at some point) and the doctor was coming to see her. Sounded like code to me, so I set off post haste.

I arrived later than I usually do and met the doctor at the nurse's station. He looked grave and concerned. My stomach shrank.

Rosemarie was propped up in bed but at an angle. Her eyes were closed and she was breathing in a laboured, bubbling way. She did not respond in any way. The doctor said he thought that she had inhaled some of her vomit which, being very acidic, had inflamed her lungs and was causing the breathing difficulties. Her oxygen count had fallen over the last half hour from 85 to 70 to 65 and there was very real danger of tissue damage. Hospital was one option, but that would almost certainly mean the nearby Death Hospital and all they could do was give her some oxygen and intravenous antibiotics to counter the anticipated infection. If she survived the journey. Or she could stay in the Care Home, be made as comfortable as possible, and see how things went. My choice.

I can't write any more tonight. As of now she is still alive. I am deadly tired. I must sleep.

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.

Chair Again

In general I have been happy with her purple reclining chair despite its mass and poor maneuverability,  but over the last few weeks we have had some problems: she is slipping down a lot.  Whether it is agitation or just restlessness was difficult to tell, but once she starts to wriggle she slips down, then folds herself into an S shape in an apparent attempt to get comfortable. She really need lifting back into a proper upright sitting position about every half hour. The alternative is to tilt the chair so far back that she is basically lying down.

When the chair was first supplied I really wanted the Croydon OT, who had been so helpful, to have a look at it before I said Yes, but was bounced into a decision because the attitude of the Home was that the OT did not have a veto because Croydon was not paying.

I did ask her to come and look at it after the event since the Home had not bought either the chair or the sling she had specified, and she agreed, but one thing or another got in the way and she never made it.

On 20th September I got a very apologetic call from the OT saying how guilty she felt about not visiting and offering to come on the Friday. This was perfect timing because I was starting to get concerned and would value her input. We settled on 3.30 and she confirmed with the Care Home.

She arrived late but that worked well because Rosemarie was quite tired and slipping badly. 

She was not impressed. The chair, she said, was far too big and provided no support. Dementia patients like to feel the reassurance of firm support and the chair did not provide it. The torso support pads could not be adjusted inwards enough to keep her upright, and the head supports were too high. 

Rosemarie had slipped down the sling to such an extent that when the care workers came to hoist her into bed they had such difficulty with the leg straps that she was lifted like a crab. The look on the OT's face would have cut through steel.

We left them to it and retired to a small room called the Quiet Lounge to discuss what to do. 

We discussed the shortcomings of the chair, the inappropriateness of the sling, and the obvious pressures on the Care Workers. We agreed that the Salesman who had provided the chair had behaved very unprofessionally. Either he had not measured Rosemarie or he ignored her needs in order to sell the chair he had brought with him. In any case he must have realised it was too big. 

I suggested we ask for a meeting to include the Care Home Manager, the Salesman (or a representative of the company), the OT and me. The OT would challenge the rep to agree that the chair was unsuitable as it was and together they could assess whether it could be adjusted to fit her or if it needed to be replaced. Once this had been established the rep and the Manager could discuss who was going to pay for it. 

She said she would write a sharp and detailed report within a few days.

And she did. And it was. New Nurse opened the letter and read it and immediately realised it was a hot potato. The Care Home Manager was on holiday and her deputy, the Care Manager, clearly did not want to deal with it. I was assured it would be dealt with promptly when the boss was back.

That was well over three weeks ago and on the 19th October I got a call from the OT saying she had not even had an acknowledgement of her letter. In her opinion the Home's tardiness in dealing with an important problem that had been brought to their attention constituted neglect and she was ready to raise the issue with Croydon Safeguarding Team, which would bring all kinds of pain down on the Manager's head. 

I was reluctant to implement this nuclear option without giving them a chance to comply and said I would call the home and find out if anything was happening. (This was obviously the OT's purpose in calling me.) 

Well things appear to be moving albeit slowly. The Manager had read the report and written to the rep (or his company) asking when he would be available for a meeting. She sounded less than happy with me, particularly when I advised her to email or call the OT asap.

And in the meantime Rosemarie continues to slide down in the chair.

I am taking plenty of pictures. 

Dream

Last night I had a very intense dream about Rosemarie.

We were in a bigger version of the care home, more like a hospital, though the corridors and the decor were the same. There were lots of people bustling around, but suddenly they parted and I could see Rosemarie down the far end of the corridor. She was walking unaided towards me, smiling and laughing and glad to see me. We hugged and cried and I thought my heart would break.

Then she was gone, off to thank some doctors. It took me a while to find her, but when I did I told her that I wanted to take some pictures on my phone of her walking, to send to our son and daughter. 

We tried for ages to take some pictures: in the lounges, in the corridor and even outside, but nothing worked: either it was too dark or people kept walking in between us.

Then I woke up, and for a second or two I was filled with joy - and then I realised it was a dream, and the darkness came crashing down.

Some of the feelings of joy remain though.

So much cold and dark and sadness in the last few years, I had forgotten the feelings of joy and warmth and love when we were together.

SALT 2

This is a long overdue post and I have quite a lot to catch up on. 

I have been waiting to meet the Speech And Language Therapist for some time. I spoke to her on the phone after the first time she saw Rosemarie (I was not present) but since then the Clonazepam has been stopped and I thought this may have made her swallowing easier. I had asked for another referral (and stressed I wanted to be there) but had been told that the waiting list was 28 weeks. Good Nurse, before she went on maternity leave, was trying to get a SALT from the Rapid Response Team to do an assessment, but whenever I chased either of these options up I got no feedback.

Then on Sept 21st I got a call from the Care Home at 9.30 advising me that the SALT was visiting at 12.30. That day. Three hours' notice. Lucky I wasn't working.

Of course 12.30 is lunchtime, and a good time to observe Rosemarie eating. I am not normally there to give her lunch so she has it in the lounge. I moved her to her room to feed her because it was more private (for the assessment) and had the microwave (hot food).

The SALT duly arrived and turned out to be the person I had talked with on the phone all those months ago. She had been coming to the Home to see another resident and had seen Rosemarie's name on the list and decided to squeeze her in. 

I was feeding Rosemarie when she arrived and for a few minutes she just sat and watched, getting up from time to time and listening through her stethoscope to Rosemarie's throat as she was eating. I had a very strong feeling that I was being assessed just as much as Rosemarie.

I am always very cautious feeding Rosemarie but I wanted to represent the full range of techniques the Home uses to feed her. This provoked some slightly alarmed comments from the SALT and we had a very useful discussion about her problems and how to address them. 

The 'three swallows' rule still applies and the SALT explained in detail the mechanics of swallowing food and showed me how to recognise the stages. It is apparent that the whole process is problematic for Rosemarie and although sometimes she does swallow easily and in one or two attempts it is the exception not the rule. 

It made me worried that the speed at which the carers feed her is perilously close to force feeding and I asked the SALT to write all this down in Rosemarie's notes so it was part of her care plan. 

She also pointed out behaviour that she characterised as Rosemarie indicating that she didn't want any more food. This included turning her head away from the spoon, keeping her teeth closed and tilting her head back. When I write it like that it seems pretty unambiguous, but it is not that simple. Sometimes, I think, she does not register me telling her that food is coming and she responds to the spoon as a foreign object touching her lips. When I repeat that I am giving her hot food she opens her mouth and accepts it. Of course, it could be that she feels full or tired and doesn't want to eat, but this decision does not persist and she is easily 'tricked' into eating by trying again a few seconds later. I also think that sometimes she is trying to indicate that the food is unappetising or too cold: heating it up in the microwave makes it more palatable.

The SALT pointed out that Rosemarie gets very tired and the process of eating is much more arduous for her because less of it is automatic. She also may be filled up by the thickened liquids she is given regularly. 

I said to the SALT that if we stopped feeding her the first time she refused a spoonful she would starve to death in short order. Her response was that any type of forced feeding increased the risk of aspiration. If Rosemarie really didn't want to eat her food it was not in her best interests to force her, so it all becomes about interpreting the signals.

Which raises another more chilling possibility.

Rosemarie's communication options are incredibly limited. If she decided deep inside that she had just about had enough of all this and wanted it to end, about the only communication option available to her is to refuse food.

This is all so complicated.

The Law Of Four

After a few uneventful weeks it has been a busy few days.

There have been problems using the new wheelchair. Not the chair itself, which is excellent, but the procedures around using it. 

It is not as comfortable as her reclining chair and the engineer who fitted it for her said that three hours was the maximum time for her to be in it, and in practice she starts to get restless after about two hours.

Its main purpose is to give easier access to the parts of the garden served by paths with a significant camber, and allow her to take up less room at the afternoon activity sessions (the reclining chair is a bit of a monster).

It takes six minutes (I have timed it) to get the hoist, transfer her from one chair to the other (which Rosemarie finds quite unstressful) and return the hoist. Hardly a huge chunk of time, and only one care worker is required because a visitor is always there to help. But somehow this has become a Major Event for the staff and the idea that it can be done more than three or four times a day seems to violate some care worker's ethos. One care worker in particular is adamant that if Rosemarie is moved from the wheelchair it must be to bed for the rest of the day. 

It all came to a head this week. I have been trying to establish for some time that Rosemarie has actually been having her pad checked about every four hours and changed if necessary. I have never observed this any time I have been there throughout the day but I have been shrilly assured that it does happen, usually just before I got there. No other visitors have seen it either. Conversations with the Particular Care Worker about the options for moving her were very enlightening. Rosemarie could not be moved from bed to reclining chair, reclining chair to wheelchair, wheelchair to reclining chair and reclining chair to bed at the end of the day because FOUR MOVES WAS TOO MANY.

But wait. If they were checking her pad during the day that means bed to chair, chair to bed (for checking), bed to chair and chair to bed at the end of the day and that is four moves which is apparently TOO MANY. I raised this mathematical conundrum with New Nurse on Monday and after a lot of defensive body language he said that he would not talk about the past but going forward she would be checked every four hours. 

I also established that I wanted Rosemarie to go to Physiotherapy on Tuesday afternoon in the wheelchair. We agree that she would be moved from the reclining chair to the wheelchair after lunch, and I would take her down. When I brought her up she would be moved to the bed so her pad could be checked then moved to the reclining chair. 

Tuesday I was there nice and early. One of the new intake of care workers (sweet and helpful) had been assigned to Rosemarie. I checked with her and the New Nurse that the plan was still on and they agreed. I helped with getting Rosemarie into the wheelchair and took her downstairs. 

An hour or so later I brought her back up and found her assigned care worker doing some notes. New Nurse was on a break. I said I was ready to help her check Rosemarie's pad and move her to the reclining chair. She said she would be along in a couple of minutes. I took Rosemarie to her room and got things ready. 

After ten minutes I went in search of the care worker and found her still doing her notes but looking very uncomfortable. I asked her to come and help me but she sheepishly said she had been told that we had to put Rosemarie to bed. No, I said, we are moving her to the reclining chair, as agreed with New Nurse. We couldn't do that, she said. Rosemarie had to be put to bed. I enquired who had told her this. Particular Care Worker had vetoed the plan.

I did not take this well. I rather loudly enquired if she was now in charge of the floor and did New Nurse know. Apparently he was expected back imminently. I said I would wait in the room and would she ask him to come and see me as soon as he got back. If he was not back soon I would go downstairs and take the matter up with the Care Home Manager.

This had the desired effect and within ten minutes he was in the room, conciliatory and uncomfortable. He had got the message and already spoken with the Care Home Manager and had a Deal. No mention of Particular Care Worker and an almost desperate disinclination to discuss the events of the day so far. 

What I agreed to try was a plan where on days where she was going to use the wheelchair she would stay in bed until just before or just after lunch and moved to the reclining chair after had pad has been checked on her return from wherever she went. This would preserve the sanctity of the Law Of Four. 

I agreed to try this but I can't see it working in the long term. The activities in the afternoon start at about 2.30 and last for about an hour. The chances are that the care workers will, over the course of time, get Rosemarie out of bed earlier and earlier to avoid conflicts with lunch (which is a moveable feast) which will mean she will be tired of the chair before the activities have properly started. 

I am going to have to let things calm down slightly then speak with the Care Home Manager about this mysterious Law. If Rosemarie is tired or distressed then of course we should consider putting her to bed, but if she is alert and in a good mood why not let her stay up and move her to one of the lounges or the patio?

I have not seen Particular Care Worker since. She is probably avoiding me. This is sad because I actually quite like her. She has Rosemarie's interests and heart and most of the time she is kind and supportive. 

I am sure that she thinks she is doing the best for Rosemarie but in this particular case she doesn't have a veto.

The slow river of inevitable decline

One day follows another. We survived the frightening rapids and in some ways it is peaceful now. Rosemarie is up mid morning every day and is usually awake in her reclining chair when I arrive. She is (apparently) eating all of her breakfast and all of her lunch and certainly all of her supper plus her afternoon treat. Increasingly she is being taken to activities by the team and the warmer weather means that we can go into the garden more. She seems to like me reading to her and I think she appreciates me moisturising her face and neck. She seems generally very comfortable in the chair and has not had a UTI for a good few months.

And yet....

I am still losing her bit by bit each day. Her face is often contorted into a sort of twisted pursing of the lips and her hands grip randomly and tightly at anything, the wrists usually bent fully forward. Her legs are rigidly bent to the side and her body is sometimes unnaturally twisted. She hardly ever 'talks' but frequently emits staccato sounds in a startled outburst. She rarely smiles at me or even registers my presence. She is barely aware she is in the garden and does not to see the flowers. She seems to have stopped looking at the pictures of her granddaughter.

Sometimes the days are busy with problems to sort out and all I notice is her general state; but when it is quiet, and my mind has slowed down, I watch and notice the small signs.

There is no hope. There is just more of the same, getting worse.

A Little Coughing

Things seem to have settled into a routine. Most days Rosemarie is up after breakfast unless she is 'too sleepy' (which usually coincides with staff shortages) and usually dozing (bored) when I arrive. She seems to be sleepy after lunch (but then so am I) and more alert late afternoon / early evening.  We have managed several trips to the garden when it is warm enough, and we talk about the flowers and the pigeons and the fox or I read to her.

But there is always something.

Rosemarie was moved on to a pureed diet with thickened fluids because she was aspirating and this hugely increased the risk of lung infection. The SALT wrote down the guidelines for feeding her and promptly discharged her. The dietician did a 'consultation' over the phone with a nurse who was not familiar with Rosemarie and promptly discharged her.

I have been working with Good Nurse to get these two professionals back to do another assessment. There is some ambiguity about whether she is supposed to be on Stage 2 or Stage 3, and the feeding notes need to be clarified.

I was originally told the pureed food should be the consistency of 'custard' - whatever that means - but the consistency of the food she is provided with varies from what is basically finely chopped mince beef with or sometimes without gravy, and regular mashed potatoes, to a plate full of thick soup. For sweet she is sometimes given a regular yoghurt, sometimes an Extra Thick yoghurt, and sometimes Nutilis Stage 3, which has the consistency of grout. 

The juices, water and tea(!) are thickened with Nutilis Clear, and the instructions are to put the powder in the cup first, then add the liquid (two scoops per 200ml). Any unused preparation should be discarded after two hours.

The result obviously depends on the consistency of the liquid you start with: water is the most...watery, along with tea and thin juice. I supply thicker juices, and the Care Home supplies Ames Complete, which is the consistency of drinking yoghurt. 

So you can wind up with anything from the thickness of double cream to thick jelly (the latter if two heaped scoops have been put into thicker juice and left for three hours or more). 

And the other day a care worker came in with a cup of tea, put a single scoop of thickener in, gave it a quick stir and made Rosemarie drink it from the cup (not with a spoon). When I enquired why she had only put in one scoop she told me it was so Rosemarie would find it easier to drink.

If the consistency is so important it is important that it is....consistent.

And I am not sure now how important it is.

The rule seems to have been allowed to develop that if Rosemarie starts coughing she is aspirating and something is going wrong. This originates from the SALT instructions posted on her wall, that states that if she starts coughing or displays signs of shortness of breath, the doctor should be notified immediately. It makes sense as far as it goes, but doesn't really define what it means by coughing. Obviously if she is distressed and coughing hard, having difficulty breathing, watery eyes, red face....no question. But a couple of quiet coughs, and an attempt to clear her throat of phlegm....?

The guidelines also say she should be as near upright as possible (60 to 90 degrees), fed small portions, and given plenty of time to swallow (the suggestion is that she may take three swallows to clear her mouth of each spoonful).

In a one to one setting, with a microwave handy to reheat the food, and attentive family or friends, this is possible, and she can be fed a variety of consistencies with no or only occasional coughing.

If she is being fed in the lounge it is a different matter. The chair is often tilted right back so her spine is at 45 degrees ('in case she falls out') and if there is no cushion behind her head it will tilt back even more.

The care workers (maximum 4) have nine residents who need feeding, plus the others who need serving. So what are the chances of Rosemarie being fed slowly and in small portions?

I am sure they try. These are not bad people, just overworked. But I have seen Rosemarie presented with the next spoonful while she is still chewing the previous one. This is a recipe for coughing, if not aspiration. 

And once she starts coughing, the temptation is to stop feeding her 'because there is a risk'. Not 'give her a chance to settle down again then take it slowly'. Twice in the past week I have been told that they had to stop giving her lunch because she started coughing. I don't really want to make a direct allegation, but I can see how it is convenient if there is a reason to have one less person to feed...I am sure it would all be subconscious.

I really need to be there when the SALT and dietician visit.

There Is No Spoon

Rosemarie still spends a lot of time in her room, even when she is up. I prefer to give her supper in her room (we can reheat the food in the microwave) and ditto lunch if I or another visitor are there. We also have treats like chocolate trifle in the fridge.

If she is in bed 'sleepy' there is also the requirement to give her fluid.

All this requires spoons. 

There aren't always spoons.

To begin with I took in packets of plastic spoons like you use for picnics, but Rosemarie started to bite down hard on them and the last thing we needed was her swallowing sharp pieces of plastic. 

So I thought about the metal spoons provided by the home. 

There is usually (but not always) a clean spoon in the clean beaker on her small chest of drawers ready for mixing up thickened juice. They bring one with the meal (for the main course, to be washed and used again if they provide a dessert). 

However, mostly these get cleared away regularly and I often arrived at Rosemarie's room to find no spoons - and sometimes no beaker for the juice. The beaker is less of a problem because there are usually some in one of the lounges on Rosemarie's floor, but the only source of spoons outside mealtimes is the kitchen on the lower ground floor. It probably only takes 10 minutes to go and get some, but it means having to find someone to keep an eye on Rosemarie if she is in her chair, and in any case it just seems.....wrong.

So I collected the odd spoon that came my way and tried to make sure there were always three in the room: one for the fridge treats, one spare for fluids and one spare in case they didn't bring one for the yoghurt or whatever they were going to give her for dessert.

I didn't think it was excessive. It wasn't going to break the bank, and I made no effort to hide them: they were in a bowl on top of the microwave. 

After a few days they started disappearing. At first I thought the staff may think they were dirty or had been left out for collection, so I moved them to one of the drawers. They started disappearing from there too.

I had also retained a plastic cup with a sippy cup lid, so I could prepare a thickened juice drink to take down to the garden safely without having to go hunting round the building for one of the rare lids.

That disappeared too. 

And a neat little note appeared from Good Nurse, asking me not to retain spoons and cups in the room, saying that they were for the use of all residents (!)

I didn't want to go to war about this so I calmly brought in a couple of spoons from home and left them in the drawer. I also brought some of my own ceramic cups so I could make tea.

Today one of my spoons disappeared.

I think we will have to have words.

Sleep and Chairs

Rosemarie is still sleeping a lot. They keep telling me.

The fluid intake chart still shows her as being awake enough to have up to 100 ml of thickened water or juice during the night at least a couple of times a week, usually about 2 a.m. and again at about 5 - 6 a.m. I suspect she is awake at night more often, and this accounts for a lot of her tiredness as I have written before, but I have been looking at the charts and talking to others and doing some thinking.

All of this assumes the intake chart is accurately reflecting what is happening when I am not there.

Usually she is awake enough to eat all her breakfast at about 9 a.m., and drink some Ames and thickened fluid. Even when she is recorded as awake during the night she seems alert enough for breakfast - maybe she is hungry.

Sometimes she is marked as sleepy during the morning and sometimes not. They don't complete a sleep chart during the day and I think they are sometimes recording her as sleeping on the intake chart when they come to give her fluid and she is asleep. As with so many things there is no standard procedure for writing things down so an empty chart doesn't actually mean anything.

She is usually awake enough to have some or all of her lunch, but she almost always falls asleep afterwards (we have witnessed this) and will sleep on and off most of the afternoon. When she does wake up she seems instantly wide awake, and if stimulated will usually stay awake for a while. Often she will go back to sleep almost immediately, but she is almost always awake by the time supper arrives at about 5. She shows no signs of wanting to sleep afterwards, and is often at her most alert when I need to leave at about 7.

At one stage I assumed the 'sleepiness' was an excuse to leave her in bed (which is less work) and I think that is still true to an extent, but I have argued that is she is up and in her chair then when she wakes from her doze (which is what I think it is, often) at least there is a chance of her being stimulated.

I had an interaction with the Care Home Manager and she agreed that by default Rosemarie should be dressed and up by mid morning. From last Monday (13th) this started happening and I am mostly happy with the result. She is either awake or less deeply asleep when I arrive, and on warm days it is possible to take her into the garden, and on wet days we can go to the downstairs lounge and look at the wet garden through the rain-streaked windows.

My only concern is there is a marked disinclination to move her from the chair except to put her back to bed ("too tired" has happened a couple of times in the last week), and this can mean she goes for seven hours or more without having her pad checked (supposed to happen every four hours). I will have to work on this because we do not want a resurgence of the UTI.

The staff also have to be trained and reminded about adjusting the chair every hour or so to prevent sores forming.

Ah yes. There is a new reclining chair for her, delivered yesterday.

We have been agitating for some time for a proper padded reclining chair and the one loaned by Croydon Social Services has done a sterling job. It was on loan for 4-6 weeks while the Home organised purchasing a chair matching the OT's specifications. They are legally obliged to do this, but it comes as no surprise they are reluctant to pay the £3800 asking price. They kept dragging their feet (and there was the legitimate hiatus when Rosemarie was a Death's Door) and the loan stretched to 15 weeks and Croydon understandably started getting impatient and threatened to start charging rent on the chair. 

Suddenly things started to move.

I was treated to some fairly blatant and amateurish expectation manipulation: shown a proposal for a totally unsuitable chair that was understandably dirt cheap and left to stew and boil for a day or two, then the Care Home Manager sought me out to tell me that she didn't really like that chair and had identified a much better mid range chair that she thought was suitable. She had a sample delivered when I was not there and took lots of pictures of Rosemarie sitting in it apparently happily. Here was the Sales Brochure. Would I like to proceed? 

No I would not. I want to see it for myself, sit in it myself, see Rosemarie sit in it with my own eyes. Agreed. 

These things happened and I have to say I found very little to complain about, and in some aspects it was better than the specified chair. The Croydon OT does not have the final say, the Home does (and they have a tame OT they can bring in if things get sticky), and I could not come up with a reason not to proceed. All I could do was state a couple of minor concerns that I can refer back to should in be necessary (absence of foot box and shaped back support).

But Rosemarie seems comfortable in it and that is the most important thing.