January – February 2011 – Getting Feeding Right - New Wheelchair - Communication Challenges – Botox - Planning Carol’s Funeral

New Year started with us still trying to get Carol’s feeding regime right. As I’d said earlier we’d be moving Carol onto total PEG feeding during this period as it became more of a struggle to give anything by mouth. Carol also had to stop taking drinks so fluid was flushed in through the PEG using a syringe. Initially Carol was on the 1 litre / 1000 calorie feed but this just wasn’t filling her up so we moved onto the 1 litre / 1500 calorie feed instead. We were also given milkshake energy drinks to use as top-ups whenever Carol felt hungry. The actual PEG feeding process was really simple and with the ability to put fluids and medication through the PEG tube it suddenly became much easier to control Carol’s daily intake. Carol was put on a 10 hour feed (at 100mls / hour) so we decided to do that through the night to minimise disruption with care visits and so on. This would work for a few months but eventually Carol’s sleep would begin to be affected.

As we’d feared Carol had lost mobility and leg strength while in hospital but the new equipment was really helping. However, we did identify a problem with the hoist in that it wasn’t allowing the full range of movement we needed to comfortably transfer Carol between bed / chair / commode. So a new Arjo electric hoist was brought in and this one had the facility to tilt the sling, which made a massive difference to how we could manoeuvre Carol around. This is an excellent piece of equipment and it has made our lives much easier.

Solving one problem highlighted another, as it so often seemed to do, and Carol really needed to be assessed for a more comfortable wheelchair. This was all due to Carol’s upper body becoming weaker and us noticing how she sat when upright in the chair. As Carol now spent all day in the chair we were concerned about her comfort and wanted something with more support. HSC Mobility came out to assess Carol and agreed that a new chair was required. They ordered one with a larger seat and more comfortable armrests, plus a tilt facility to improve Carol’s positioning. It took a few weeks to arrive but this chair would make a huge difference to Carol’s comfort during the day. 

Carol’s fingers were now beginning to struggle with typing on the Litewriter keys so we had a discussion with the Speech Therapist. She supplied us with a similar machine that had a scanning facility – basically the letters are highlighted in turn on the screen and Carol would press a button to select them to build the words. This sounded like a good idea but in practice it was not very user friendly for Carol so we sent it back.

Changing direction I spoke to Ros, our local MNDA co-ordinator, and she arranged for a laptop to be loaned to us through the MNDA. This was supplied by AbilityNet and had the Grid2 software installed. I went through a tutorial over the phone with them to set the laptop up to Carol’s preferences before we could use it. This solved our immediate problem as the system was just what Carol needed. Carol was still struggling to type but we had a buddy button supplied that Carol could press to select letters / words / items that were highlighted on the screen. I was impressed with this system and it certainly did the job for Carol, she was now able to use the internet, text via her mobile phone and use the speech facility to talk to visitors at home - and since the Litewriters had gone back she'd stopped swearing so much!

I’ve not mentioned the secretions problem for a while but it was most definitely still there. Despite everything that had been going on and Carol becoming weaker this remained the one thing that Carol was most concerned about. The saliva build up was constant, as I’d explained earlier Carol was struggling to clear her throat due to a weakened swallowing reflex. Carol was wearing bibs / kitchen roll over her collar and the almost constant dribbling really bothered her. I’ve lost count of how many different medications we’d tried and even those with side effects of a dry mouth hadn’t worked, and then someone suggested botox. This was a new one for us and involved an injection into the saliva glands in the neck with the end result of hopefully stopping the secretions. Carol was a little unsure but I think after struggling with the problem for so long she just wanted a solution. We went along for the first injection in February – the doctor was very nice but advised that nothing would happen immediately. The injections would need time to work so patience was required and after our next visit Carol may start to see some changes (but that wasn’t due until March).

Here’s one of those delicate subjects that many of us just don’t know how to handle – me included. I’d been thinking about what Carol’s funeral wishes would be for a long time and decided I’d ask her to tell me – so I didn’t get it wrong – the problem was I just couldn’t seem to start the conversation.

Now this is the absolute truth as well as one of those coincidences that just make you go “huh?”. This particular day I’d had a chat at work with Tom and said how hard I was finding it to broach the subject, and we agreed I’d go home and do it that day. When I got home Bec was sat with Carol and I could see they’d both been crying. Bec had a scribbled note in her hand where she’d written down what Carol had asked her to do for her funeral – I don’t care what you say, that’s just spooky.

Anyway the subject was now open so we sat down and went through what Carol wanted me to arrange. It was upsetting but also pleasing to know I could do exactly what Carol wanted rather than what I might think she’d want – and I’ll tell you I would have got a lot of it wrong!

Carol wants the service to be in Cornwall, a cremation and in her own words “no god crap!” Carol has asked for specific songs – “Suspicious Minds”, “Sherry”, “Never Forget”, “Sweet Child Of Mine” and given me a list of places where she would like her ashes to be scattered – the lawn at Graceland, the Jersey shore and Liberty Island to name just a few. I organised the whole thing with a local funeral home and that’s one less thing for us to worry about – let’s just hope we don’t need it for a while yet.