Rollercoasters End At The Bottom

Two weeks of a punishing emotional journey that left me pretty much burned out. This is a long post. Make yourself a cup of tea or something.

Seeing Rosemarie in continual pain, or with it hanging darkly over her if she didn't have her medication, was one kind of torture. I felt for her but knew there was a strong likelihood that the cause of the pain could be dealt with permanently, or at least made easily manageable. Watching Rosemarie pass through wave after wave of distress, totally beyond any form of comfort, was a different agony entirely. Helplessness is its own special form of tragedy.

My daily notes from these two weeks are cruelly repetitive. Most days I arrived to find Rosemarie crying. Sometimes the nurses tell me she was alright in the morning, laughing and clapping and singing, but something happens around lunchtime and she gets distressed and tearful and this lasts for the rest of the day until exhaustion puts her to sleep. Or I arrive to be told she had a very disturbed night, trying to get out of bed, pulling the sheets off and sobbing uncontrollably. This lasts until the early hours of the morning, maybe three or four o'clock. She finally sleeps and will not wake for breakfast. She has to be woken for lunch and her medication. If the PT and OT arrive in the morning she is usually too sleepy to co-operate and the session is wasted. Forced to wake for lunch she eats little, is drowsy and irritated, and this develops into the distress I see when I arrive late afternoon.

And still flashes of hope. On Thursday 27th in the afternoon two nurses arrived from Neurology (No nametags. Very X-files) to attempt an EEG. As if Rosemarie would allow them to glue about twenty electrodes to various parts of her skull and face and then expect her to sit patiently for ten minutes without touching them.

Actually she did. I had to hold her hand the whole time and keep up a ceaseless chatter to keep her attention, and there was an interesting part where they had to get her to close her eyes for ten seconds (covering her eyes with a tissue was the clever plan). They seemed satisfied in the end and disappeared as mysteriously as they had arrived.

Kirsty the Speech Therapist turned up again and my daughter got to speak to her. Once again her input was clear, intelligent and unrelentingly positive.

PT and OT came by and had a very positive session where Rosemarie stood up several times without any real distress (although it does seem to tire her so we have to stop and the right time).

Spoke to the ward doctor Charlie who said the neurologists had come by to test whether the jolting that was affecting Rosemarie increasingly was part of the Dementia or a manifestation of another problem like Parkinson's or Epilepsy.

Early evening brought on the distress and sobbing. It did not stop before we had to leave.

The next day was a similar mix. A bad night, and she slept most of the morning. But the PT and OT arrived early afternoon and there was a very positive session. The nurses wanted to avoid bed sores so needed to swap the standard mattress for an air filled one. This meant Rosemarie had to get out of bed one way or another. They brought a wheelchair and after a few attempts we were able to get her to stand long enough for me to shuffle her along to sit in it. She sat there calmly and apparently happily while they replaced the mattress and inflated it. The journey back to bed was easy and evoked spontaneous and genuine applause. She obviously found it exhausting though because she fell asleep almost immediately and would not really wake for dinner.

Her day ended less happily. They were worried about a return of the urinary tract infection and needed a urine sample. The only way to do this was a catheter.

Not the best twenty minutes of my life.

Saturday 1st was a strange day. My daughter had bought me a wine tasting session and meal at Vinopolis for Christmas and the date couldn't be changed. This was the day. Our fiend Celia was down from Derbyshire and came with my son to make up the party.

Rosemarie was crying when we arrived but perked up when she saw Celia (who produced some strawberries that were very popular) and my daughter managed to wash her hair in bed. Apparently Rosemarie had enjoyed a good night, and even more amazingly, two PTs (not the usual ones) had arrived in the morning and, according to the notes on her file, had got her to walk FOUR METRES, and sit in a chair for some time between forty minutes and two hours (depending on who you asked) before returning to bed. This was phenomenal news and we wanted to speak to these therapists, but unfortunately they were elsewhere.

SIDE NOTE: We had been coming every day for about two weeks now, for up to seven or eight hours at a time, and we had developed (we thought) a good working relationship with the staff. We were not rude or particularly demanding, we were willing to help whenever we could, and in general we felt that the place was becoming a second home. Because of this, and the fact that we provided one to one supervision for Rosemarie, and taking into account the nature of her illness, the Ward Manager Amanda had said we could come any time we wanted (within reason). The Speech Therapist had encouraged us to bring things in from home that Rosemarie might recognise, so we brought a music player for her ballet music, her Day Book, and a small bromeliad in a round pink pot. In addition we had brought in a small kettle, teabags and a couple of cups so we could make tea without having to go down from the eighth to the ground floor to find out that the café was closed.

My daughter and I left at about 2.30 for Vinopolis, leaving our son and Celia with Rosemarie.

One of the things she was finding most distressing since coming out of the acute pain was using her incontinence pads. Because she could not sit and walk she could not use the commode or the toilet. She had to open her bowels and bladder where she was, lying in the bed. This is not particularly natural: she had spent almost her entire life feeling that this was wrong. We tried to reassure her that it was ok but she was usually very distressed and sobbing apologies and crying "No! No! No!". She then had the discomfort of sitting in a soiled pad until the nurses could change her.

While my daughter and I were gone they tried to use a bedpan with disastrous results. We don't know who it was but whoever it was did not understand Rosemarie's inability to understand instructions and limited ability to control her body.

My son was also told that no flowers were allowed in the ward and that he had to leave at the end of visiting hours (8 o'clock) even though Rosemarie was really distressed.

When my daughter and I arrived the following day we were told by the duty nurse that at handover that morning they had all been told we were not allowed to use the kettle.

We knew that weekend staff are not usually the best people to sort this type of problem out but we enquired gently what the reason was. This obviously caught them unawares because nobody seemed to know. We were told variously that plants were an infection risk, that some patients may be allergic to them, and they took up too much space. As far as the question of the kettle was concerned, nobody mentioned the understandable health a safety risk of boiling water (although we were extremely careful) but bizarrely that nothing electrical could be plugged in unless it had been tested. This is actually not unreasonable, and it is a quite common standard in business that all electrical equipment is PAT tested regularly. What made it less convincing as an argument was that nobody was complaining about the radios and phone chargers plugged in everywhere. Not to mention that none of the medical equipment plugged in around the place showed any trace of a testing label.

Rosemarie had not slept well the previous night and was sleepy and tearful throughout the day.

Monday 3rd was more of the same. Occasional good moments when she was 'dancing' and singing with Damilola (a lovely, sweet, cheerful nurse) but a background of tears and distress, and aborted attempts by PT and OT to get her to stand. They did get her to sit briefly in a wheelchair but she didn't like it.

We did sort out with Amanda that we were welcome any time. If we wanted hot water we could ask the nurses and they would get some for us, and the plant would have to be referred to infection control (translation: Leave it where it is). The ward doctor Charlie came by to report that the neurologists had ruled out epilepsy or Parkinson's and the jolts were part of the general condition and would be treated by medication. Rosemarie was also getting constipated again and she would be given a mild laxative.

Rosemarie's emotional state deteriorated rapidly as the evening progressed and she became very agitated, loud and abusive. She was very distressed when we left her.

And so it continued day after day. Bad nights, sleepy mornings, distress and tears. Not eating enough, not drinking enough, and only brief interludes of good humour, usually when she was interacting with Damilola or Kadeon.

The weekend of the 8th and 9th was particularly bad. Rosemarie started behaving as if she was in pain again (jacknifing up in bed, holding her stomach, and shouting "Make it stop!" and it was easy to imagine the cause was the constipation. However, if I asked her if her head or arm was hurting she would also say "Yes".  She was clearly in distress though, and was sweaty and clammy. She would sob and moan in a long crescendo that would end in a scream. She would flop back on the bed for about twenty seconds and the whole thing would start again. This would go on until she was so exhausted she would fall asleep.

It became clear as time went on that this was an emotional rather than a physical problem. When we could understand her sobbing words they seemed to be about her father, or not knowing what she had to do, or feeling useless. There seemed to be two distinct conditions. She would lie or sit up with her eyes closed, sobbing, face contorted in misery, and stammer the same syllable again and again in a high pitched voice. A firm "Rosemarie! Open your eyes and look at me!" would interrupt this for a few seconds, and she would speak more clearly in a much lower voice, but not seem to know why she was upset or even that she had been crying. This window would close after about ten seconds and her eyes would close, her face would contort, and she would start sobbing again.

By the Tuesday the more extreme agitation seemed to have passed but there was a much finer balance between tears and distress on one side and laughter and calmness on the other. The slightest thing could start the tears, and a chance remark or a look from one of the nurses could end them. The problem was there was no pattern to it and what worked one minute would fail miserably the next. And the tears and distress were much more common than the calmness and the laughing.

Wednesday and Thursday were much the same. I tried using the advice from the Speech Therapist - short simple sentences. "Rosemarie. There is nothing to be frightened about. You are in hospital. You have been very ill. You are getting better. You are doing really well." Works quite well. When it does.

"I don't know what to do," Through tears and quivering lips.

"Just eat your dinner. Start to walk again. Keep getting better. Then you can come home".

(Sobbing)

"We want you to come home. We miss you."

(More sobbing)