Neurologist

The neurologist visited last week, to look at Rosemarie's jolting. I think it has become worse and sometimes seems to distress her with its violence. She was originally prescribed Clonazepam (when she was at King's) and I asked for it to be incorporated into the current medication review. Wikipedia suggests it is not good for long term use as an anticonvulsant. The medical establishment must hate that site.

The neurologist, a briskly intelligent woman I liked at once, said that she didn't think the jolting was fits, or Parkinson's, but would discuss it with a consultant. The leaning was a different matter: no immediate diagnosis but it was unlikely to be treatable with medication. 

But now that Rosemarie is apparently clear of the chest infection, this is the only obstacle to getting her out of bed and stimulated by other environments. To do this she will need a much better wheelchair than the one she has at the moment (which is really designed for transfer rather than long duration use) - and there is one resident who has exactly the type we need. It is fully adjustable, and padded with 'wings' to support sideways leaning. 

The rub is that it costs nearly £3000 and the Care Home is legally required to provide it - which they are unlikely to be enthusiastic about. The family of the resident who has one had a five month fight and had to call in some big guns. Luckily there is solidarity amongst residents' families and I was kindly given copies of all the emails and reports...

So I need to line up a coalition of a Neurologist to pronounce on the leaning and the implied risk of falling if she is not supported, a committed Occupational Therapist to assess her detailed needs and specify the exact requirements of the chair, the Community Mental Health Team to state that she should not be confined to bed for the rest of her life when other options exist, and the funding authority to remind the Care Home who is paying the bill and what they expect for their money. 

Another day at the workface. 

But if I feel my energy waning I only have to think of the sad, helpless figure lying twisted on her bed, jolting mildly (for the most part) but uncontrollably, relying on me totally. The image waits there to appear whenever I am not actively thinking about something else (and sometimes when I am)

And in the dark nights filled with tears.

X-Ray

Last Friday Rosemarie went to the hospital for an X-Ray.

I had been dreading something like this happening. She found the original trip from King's to the care home traumatic, and several times we have been warned that a move will be very disruptive. She would have to go strapped onto a stretcher...lots of noise and new people, and possibly a significant wait at the hospital. 

But the doctor who came to examine Rosemarie earlier in the week was concerned about the persistence of the chest infection and wanted an X-ray to rule out pneumonia.

The care home were keen for me to go with her (otherwise they would lose a carer for the duration) and obviously so was I. Good Nurse told me that the transport was booked for 9 a.m. and she hoped Rosemarie would be back for lunch.

I hear so many horror stories of late transport, long waits and distressing outcomes that it was with a heavy heart that I drove to the care home in the morning.

Rosemarie was dressed and ready and being fed breakfast when I arrived. Not very well. The SALT instructions obviously hadn't filtered down to the staff.

The transport finally arrived just before 10, and things moved pretty briskly from that point. Rosemarie was transferred efficiently to the stretcher and strapped in and did not seem to object. Maybe the support of the straps was comforting after all the leaning, twisting and random arm and leg movements her body does. It never occurred to me.

The ambulance staff were relaxed and friendly and soon had her whisked down in the lift and out into the cold air and into the ambulance. Still no bad reaction. I asked them whether they thought it would happen quickly and they said they hoped so. Rosemarie wouldn't be taken off the stretcher at the hospital and the ambulance couldn't go anywhere without the stretcher.

The ambulance pulled away and as if by magic Rosemarie closed her eyes and seemed to doze. Just like toddlers in a car. Again, it had not occurred to me.

And she remained like this for the whole journey.

The journey was brief but rather uncomfortable because the driver kept choosing back roads that had speed bumps. I said I thought that the bumps were supposed to be of such a size that emergency vehicles like ambulances could pass over them easily. Apparently the problem is that white van drivers realised their vans were the same wheelbase as ambulances and started using the residential roads as rat runs. So the local authority converted the speed bumps to full width...

Anyway we arrived at the hospital, parked up and moved Rosemarie (still dozy but calm) through the narrow corridors to X-ray. I presented the appropriate form to Reception. 

I looked at the waiting room.  A dozen or so people waiting. My heart sank.

"Oh", said the Receptionist, "This is a chest X-Ray. We don't do these here. They do them upstairs."

Short pause. "I won't make you go all the way upstairs. We'll do it here. Wait a moment." She bustled off. 

The driver told me that the other X-ray suite was a real pain to get to with a stretcher. Things were looking up.

Seconds later the doors opened and a technician came out and called Rosemarie's name. We were in. Just like that.

The X-ray was over in a couple of minutes. She was starting to get restless and everyone agreed that it would be best if I stayed with her, so I was dressed in a fancy lead apron and stood there holding her hand while they took the X-ray. They told us it would be forwarded to her GP in a few days. 

Then it was back to the ambulance, and bumpily through another maze of back roads to the care home with Rosemarie dozing peacefully again.  Past rather startled faces and back up to her room. She was gently moved to her bed and I said goodbye to the ambulance crew. I looked at my watch. Five to eleven. 

The whole thing had taken less than an hour. Rosemarie had not been distressed.

Sometimes you actually catch a break.

Soft

Last Wednesday Rosemarie had a visit from the Speech and Language Therapy specialist (SALT) - who had been called in to look at her eating difficulties. 

It was an early morning visit so I was not there, but the Good Nurse called me because the SALT was concerned and wanted to talk to a family member. Maybe it is the nature of the specialty but every SALT  I have met seems to be able to communicate clear, detailed and useful information without recourse to unnecessary jargon or professional vagueness. So it was this time. 

The biggest problem is that Rosemarie's swallowing reflex is not working properly and she is at serious risk of inhaling food and liquid without the safety of automatically coughing. It seems that most of the things we have been doing (giving more food when she hasn't swallowed in order to remind her she has food in her mouth, or giving her a drink to 'wash it down') is not helping and has actually made things worse. 

So she is now on a regime of pureed food and thickened drinks. The kitchen has been told and should now be providing only soft food, but there is a major communications challenge in making sure any of the dozen or so care workers who may be attending her are aware they should not give her regular juice or water. We must sit her up at 90 degrees, not rush her, and we must be on the lookout for signs of breathing difficulties.

So far it seems to be going OK. She finds eating the pureed food easier but it still takes a long time. The food is always served on plastic plates so it gets cold quickly, but I brought in a microwave so we can reheat it (although I doubt that the care staff always take the trouble). 

The biggest challenge is the thickened drinks. They are the consistency of syrup and she only takes small sips (small mouthfuls really - it doesn't exactly pour...) and we need to wait to make sure it is all swallowed. No pressure on her, so it can take 10 minutes for her to drink 10 ml.  This is going to make meeting her daily liquid intake target a big challenge.