Heading into summer (June) – part 3

Calendar entries highlighted in yellow

16th June 2009 – Sad and unexpected news


Yesterday, all my troubles seemed so far away

Now it looks as though they’re here to stay

Oh, I believe in yesterday


Suddenly, I’m not half the man I used to be

There’s a shadow hanging over me

Oh, yesterday came suddenly


Why she had to go I don’t know, she wouldn’t say

I said something wrong, now I long for yesterday


The Beatles, 1965

Alison, one of my three main carers has had to pull out of my care package completely, for personal reasons. The news has left me reeling as I had come to depend on her so much and we had grown to become good friends. In my naivety I had assumed that she would be with me for the remainder of my journey. This was a comforting thought as having consistency and stability in a care package, particularly in a terminal illness case such as this where I am totally dependent on professional care is paramount. Perhaps the lesson to be learnt here is not to become too dependent or too close to the people caring for me. But that is far easier said than done as dying from MND can be a very lonely experience, one that can make you quite vulnerable, and one that I am coming to understand more as the months go by as I become steadily more dependent on others. At the moment I’m feeling very down.

My care package is in disarray once again as even with Alison gaps were appearing that were difficult to fill thanks to the doubling of care hours that took place recently. I’m already maxed out on what Francesca can offer and probably close with Ann too. I’m due to have a meeting soon with my social care manager and of course this will now be high on the agenda. The depressing part is that whatever happens it will take time to get to know someone and feel comfortable with them. In fact it will probably need to be two people. Alison, with her background in palliative care and experience of MND was really starting to come into her own as my needs began to increase. Aside from that of course Alison and I just seemed to hit it off from the word go and experience has shown me that doesn’t happen often (although again I was extremely lucky with Francesca). It will be very difficult to find a suitable replacement. My dream team of 3 is now 2.

Before I sign off today let me say thank you so much Alison for all the extra-special care you gave me, the thoughtful little treats, being my companion on appointments, and for bringing some happiness into my life at a time when I needed it most. I have some wonderful memories to look back on and cherish and I hope you do too. Thank you for all the laughs we shared, I shall really miss those…and I will miss you even more. I hope everything works out for you. Please try and keep in touch.

17th June 2009 – Final measure up / Visit to my GP

Didn’t get much sleep last night and woke up feeling distinctly under the weather and worried about what will happen to my care package now. Not looking forward to all these strangers coming into my house and having to start building relationships from scratch again. It started this evening with a girl turning up who’d been here once before but it felt so strange without my regulars. Come back, Alison, I miss you already!

I had a guy called Jeff (from Freelift) call this morning to do the final measure up for the stairlift. Our discussion brought up several issues that had not been picked up or fully understood during the quotation process. One of the problems is actually being able to operate the stairlift. By default it comes equipped with a little joystick mounted on the arm rest but my arms are paralysed so I wouldn’t be able to position them properly. The next solution is a two-button remote control but when I was given one today I found that I had insufficient strength left in my fingers to press the buttons. In use it would be even worse as you need to press and hold down the button all the time the lift is moving. The only other option is an older wall mounted rocker switch similar to my door openers which apparently could be adapted as a hand held unit.

Another problem that’s come to light is ease of getting on/off at the bottom of the stairs because the stairlift chair cannot swivel in both directions if it’s powered. We practised with a dining chair and it looks like the clearance between my feet and the opposite wall might be a bit tight so they are now talking about extending the stairlift rail by fitting an overrun. I’m also a bit annoyed that they will probably have to remove all the staircase handrail. Because of my concerns on usage I have been in contact with my OT to see if I can visit a demo one so that I can confirm that I can actually use it. That’s now been arranged for next Tuesday.

I had my monthly appointment with my GP this afternoon and have given her a copy of my completed living will. That’s one less legal document to worry about. I plan to review it about every 3 months. A big thanks goes to Francesca for being my hands and writing it out, and to my brother, Jason, for running off the copies.

Reviewed the test results from my latest liver function blood test which have come back normal – phew! My doctor has also confirmed that she’s signed off on the wheelchair assessment so I should be contacted before too long by the wheelchair service.

18th June 2009 – Talking to my computer / Pre-assessment

It’s come to that; I’m talking to inanimate objects. That’s what happens I guess when you’re left on your own all day! On a more serious note I’ve made the first tentative steps into the world of speech recognition software. My hands are getting so bad lately that it is becoming difficult (and even impossible at times) to use my computer. As I depend totally on it for so many things I just cannot afford to lose the ability to control one. Fortunately Windows Vista comes complete with built in speech recognition software so before buying an off the shelf product I thought I’d take a look at it to see how useful it is. After running through a wizard driven microphone set up there is a lengthy tutorial which gives instruction on basic commands required for dictation and controlling Windows. Whilst you’re running through this the software is attempting to get to know your voice. So how accurate is it after this initial training session? Judge for yourself…

I said “Using speech recognition software is very frustrating. It is certainly not as easy as they make out.”

Vista read this as “Using speech recognition software is very frustrating. He is certainly not as easy as they reached out.”

Exactly! In fairness it may need further training to get to know my voice. At the moment though it’s more frustrating than useful, although it seems to fare better when surfing the Web rather than dictating text. One thing I have noticed is how dry all that speaking makes your throat.

Received an email from AbilityNet with a form to fill in as a precursor to having a computer usage assessment. This was something I have Rachel, my Social Care Manager to thank for instigating. And the way my hands are behaving lately it couldn’t come at a better time.

19th June 2009 – Care package review

I had a lengthy meeting with my social care manager this afternoon to discuss how we are going to move forward now that Alison has pulled out. One suggestion that’s raised its head again is the move to a live-in carer. I don’t feel that I’m ready to make that leap just yet but do understand that as the disease progresses I will need more help and supervision. I’m hoping that I can at least get through the remainder of this year although if my respiratory muscles weaken much further it may hasten things along. For now the care agency are in the process of talking to several carers who have some spare capacity and they’ll be shadowing my regulars to determine suitability.

20-21st June 2009 – Feeling low

I’ve not had a good weekend. My hands have been giving me a lot of problems and I’m struggling to pick up anything. My hands tremble and shake and I drop things and anything small is out of the question. It’s been a nightmare this weekend chasing food around my plate, and trying to pick up pieces of toast or bread roll almost defeated me. It’s taken me hours spread over the weekend to flick through half the pages of my latest magazine subscription and the whole thing has left me feeling weak. Looking at my hands is becoming depressing as they slowly change shape and waste away.

Francesca’s away on business this weekend so there’s been a steady stream of new faces to do my care which has made me feel even more unsettled after the recent upheaval with my care package.

Memo to myself: Must try and get out next weekend when Francesca’s back. With Alison gone and Francesca so busy lately I’ve not had a chance to use any of my social hours. I’ve been mostly stuck indoors for a couple of weeks now and that can’t be helping. I need a pick-me-up!

Today (21st) is the longest day – already! Where is this year going?

23rd June 2009 – A visit to Liftech / property viewing

It’s been a really hot day with temperatures around 28 deg C. Just as well then that I had a couple of opportunities to get out of my rather stuffy house thanks to Marion, my Occupational Therapist, who called round this morning to drive me down to the Liftech Factory at Totton. The purpose of our visit was to see for myself whether I would in fact be able to get on/off and operate a stairlift without the use of my arms. Since having the final measure up there have been a few concerns and before we were committed to manufacture I wanted reassurance that it would be useable and to do that we were going to have a play around with the demo unit. The default control is an arm mounted joystick which as suspected proved impossible for me to move with my weakened hands let alone maintain a constant pressure. The hand held remote proved equally difficult. The solution we eventually settled on was adapting a wireless feather touch rocker switch (which would normally be mounted on the wall) and using it as a foot switch. Result! And from measurements we took before setting off today we were able to simulate the space available at the bottom of the stairs and confirmed I was able to get on and off.

Late this afternoon Marion called round again and took me to view a bungalow that had appeared on the market which had been fully adapted for wheelchair disability. It was on the old Berg estate built in the late fifties. The semi-detached bungalow had been extended at the back where extensive decking around the well maintained and mature garden had been laid down. There was a standalone garage with remote operated door and an intercom system. Inside the bungalow there was a large kitchen with lowered work surfaces, a central heating system with a remote control unit, remote operated window and blinds, widened doorways and a bathroom with level access shower. I said I’d keep an open mind on it but deep down I would feel happier in my own house with all its memories rather then move into a property that just feels like I’ve come to the end of the line. I am happy where I live; I just need some conversions to make it more disabled-friendly. Still, visiting the bungalow was an interesting experience as it enabled me to see what could be done.

I had a very pleasant male carer from Zimbabwe tonight, the latest person brought in at short notice to cover my evening call. I must admit that I was surprised when the care agency phoned to say a male carer was coming as I had stipulated all along that I wanted female. But as it turned out we got along very well from the moment he walked through the door and were able to strike up a good conversation.

24th June 2009 – A bad night / New wheels / Another goodbye

I had two extremely painful episodes of cramp in the early hours of this morning. The first was around 1:30am when both calf muscles exploded into pain. It was so bad I couldn’t even stand up and just lay there writhing in agony. Unusual too in that it should affect both legs whereas in the past it has been one or the other. A few hours later I was gritting my teeth in agony again because of severe cramp in all my toes. So not a good night!

My new wheels have arrived! Yup, I’m now the proud owner of my own little chariot, or to be more accurate a Sunrise Medical Lomax Uni 9 Transit Wheelchair. Phew what a mouthful! Its arrival was a bit of a surprise as I had assumed that I would be having an assessment with the Wheelchair Service first. Obviously not. Anyway I’m pleased to say it’s a brand new model and not a reconditioned one and can be folded down into quite a compact form for ease of transport. Not as lightweight as the one that Alison brought round for me to try a little while ago but then again that was a very expensive model. Between you and me I think Francesca has been looking forward to its arrival more then I have. She has all these plans to ‘pimp my wheelchair’. I must ask her to take a few photos before she adorns it with go faster stripes, neon running lights, chrome exhausts and a snow plough on the front – oh and tinsel at Christmas she tells me :-).

It seems to be all change lately. Had a monthly meeting with Ruth, my MNDA visitor, and was told that she is relocating to America and that this would be the last time I would see her. Oh dear, that’s two people gone this month.

25th June 2009 – Catching up with the District Nurse

Anita, the cheerful young District Nurse who pops in on a regular basis dropped by this morning accompanied by Emma, a student nurse in her final year. Just a bit of a chat really filling her in on all the goings on lately. I’m not really getting much out of these meetings at the moment. Perhaps they’ll be of more benefit further down the line.

27th June 2009 – Shopping on wheels / Out and about on my chariot!

I’ve had a couple of chances to put my new wheels to the test today. I’d made a promise to Francesca that she could be the first to push me around. So this morning we bundled the fully collapsible transit wheelchair into the boot of her car and took a drive into town. I then spent the next couple of hours being pushed around from one ladies fashion shop to another as Francesca went looking for a dress to wear for an upcoming wedding. Highlight (if you can call it that) was turning a corner between aisles and almost being suffocated by a forest of Bras hanging from a low display rack – obviously below Francesca’s line of sight. What a way to go, every man’s dream :-).

For someone used to walking at a brisk pace through the town it took some getting used to being pushed around and viewing the surroundings from much lower to the ground, although I was really grateful to have the chair as my legs would not have held me up for very long. It’s funny how you notice things you’ve never paid much attention to before either. Surfaces for instance; out by the car park it was slopping tarmac so a bit of an effort for Francesca to push me up. In the shopping mall it was all polished floors so much easier and quieter. And it was goodbye to escalators and hello to lifts although within the confines of the modern shopping mall they were in abundance.

After lunch Tholani, my Zimbabwe male carer was kind enough (actually, eager is a more accurate word) to offer to push me around the housing estate which unfortunately for him is on hilly ground. All I could hear behind me was slightly laboured breathing as he pushed me up the slopes, hehe. Of course I had it easy just sitting there although I could feel my skin burning under the hot afternoon sky with temperatures near 30 deg C. Just as well I wore a hat.

So there we are my first real experiences of life as a wheelchair user. Looks like I’ll be finishing my life the same way I started – on wheels. No intermediate stages for me; because I’ve already lost so much upper body strength I knew I’d never go from walking to walking stick to crutches to wheelchair. Instead it was always going to be straight to a wheelchair – and for the same reason not a self-propelled one.


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One Response to Heading into summer (June) – part 3

  1. jane c says:

    I really sympathise with your feelings of loss on losing one of your established carers – as you say, with such a fast, progressive deterioration, having carers that “grow” with you and know your needs are essential. Having said that, we discovered that the nature of most care agencies is that the staff do not stay very long and move on rapidly and Richard also found himself having a succession of different carers for a while. Fortunately at the end, he did have the same carers for the last 6 months of his life and I even discovered after his death that one of his carers had deliberately stayed with the agency to care for Richard (even though she had actually wanted to move on, which was REALLY good of her). You may find that considering a live-in carer would give you more stability than day staff?

    As for the District Nurses, initially their visits are not necessarily of much practical use, but we found that getting to know them early on was good, so that when we did start needing their services further down the line, that feeling of familiarity that you were talking about was already established and they weren’t strangers to us.

    Glad you were able to sort the stair lift for independent operation. We obviously had ours fitted much earlier than you have had and by the time Richard was no longer able to operate the rocker switch on the arm,he had 24 hr care anyway, so we used the wall mounted one. Let’s hope it doesn’t take too long to arrive now.



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