Heading into summer (June) – part 2

Calendar entries highlighted in yellow

9th June 2009 – Order placed / A potential new carer is introduced

I’ve received an email from Cheryl (the Grant Officer) to say that an approval notice for the stairlift was on its way to me and that it was now okay to contact the company whose quotation had been selected. I immediately swung into action and phoned up Liftech (the same company responsible for fitting my electric door openers) and gave them the go ahead to proceed with the order. Unfortunately because the order is being fulfilled under grant conditions they were unwilling to process it until they had a copy of the Grant Authorisation. After some to-ing and fro-ing with the Council I was able to obtain an electronic copy which I forwarded to Liftech. I’m now just waiting for confirmation.

I was introduced to a potential new carer this evening who may be joining my care team. At the moment I have just three main carers with a couple of backups. Unfortunately they cannot completely cover for each other due to other commitments. I therefore need someone else who can fill the gaps and provide cover. For tonight the intention was to just meet and chat with me and to shadow Alison who was preparing my evening meal. We explained to her the evening routine and the sort of things that are expected. What surprised me though was finding out that she had no care experience and had come from an entirely different career background. Now I’ve no objection to giving someone a fair chance but question the logic in placing a complete newcomer with an MND client that has an escalating need. For now I suppose we’ll just see how she gets on with a few evenings and go from there. But she’ll have a lot to live up to as Alison, Ann & Francesca already do so much for me – and do it very well.

10th June 2009 – Spending time with my relatives / Back to the Respiratory Centre

Woke up feeling distinctly under the weather today of all days. I was due to pay another visit to the Respiratory Centre down in Southampton in the afternoon and my Uncle had kindly offered to take me. But first I spent a few hours with my Aunt & Uncle just chatting and catching a bite to eat although my appetite was very poor and I struggled to eat much.

The walk from the disabled car park and through the hospital left me feeling weak in the legs and I was glad to finally reach the waiting area. Didn’t get seen straight away this time but after a long wait was ferried off to a nurse who run a few tests including blood pressure. Not as many tests as last time, much to my surprise. Getting up from the low chair required help from the male nurse, another indicator of how my legs are deteriorating compared to last time. Eventually I got to see the specialist, Dr Wilkinson, and the good news is that based on our discussion she feels that there is still no need to intervene with regards to non-invasive ventilation as at the moment it seems that respiratory performance is stable, phew!. To be honest I kind of had a feeling she was going to say that as my sleep patterns still seemed normal with no headaches or nausea in the morning. We talked about NIV and I said that when the time comes I would like to trial it. I then asked how much time the care agency would need to put people on sleep-nights in place. In most cases there is a gradual decline in breathing so provided that I am monitored regularly there should be plenty of time. Just occasionally things take a more dramatic turn in which case it might be necessary to spend a few days in the hospital before being discharged to find the care package in place at home. I’m due to see her again in September and I’ve been told I’ll have the full set of tests next time (arterial blood/gas, snip, exhale etc). Can’t wait.

11th June 2009 – Not myself today / Review of my care package

Still not feeling right in myself and definitely struggling to get through my meals. I really do need to keep my calorific intake up or my weight and energy levels will plummet further.

I had a review of my care package with Rachel, my Social Care Manager. It’s the first one we’ve had since the package was increased and she was keen to find out how the additional hours and lunchtime call were benefiting me. I explained that they were having a significant benefit now that my personal care needs had escalated as things could be done in a more leisurely fashion. As always I took the opportunity to praise up my wonderful carers. Our conversation then led to a couple of off-topic subjects that were of particular interest to me. One was being given the contact details of a solicitor who would be willing to call out to my house to discuss a couple of legal matters I need setting up. The other was an offer from Rachel to get AbilityNet to come out and do a computer assessment. This is particularly timely considering all the problems I’m experiencing lately using my computers.

Chased up Liftech to make sure they’d received my email order confirmation and was told they needed a 10% deposit before starting. I’m now running around transferring funds so I can get a cheque written out and posted back to them – more delays!

13th June 2009 – Secretarial duties

We’ve had some lovely weather today and it would have been so nice to have been able to spend some of my social hours getting some fresh air. Unfortunately I had some pressing paperwork that needed to be done and Francesca has kindly volunteered to be my secretary as I have lost the ability to hold a pen and form characters. My handwriting is now worse than when I started school! One of the documents we put together this morning was a living will so now I’ll be in a position to hand it to my doctor next week when I see her. Thank you, Francesca.

14th June 2009 – Little surprises

Glorious weather again and I’m trapped indoors alone and hot. Sitting by my laptop at the dining table all I can do is look out of the patio window with envious eyes and dream of walking along the bridle paths nearby. I’ve lost all confidence to attempt walking far from the house by myself and on days like this it is particularly frustrating. Francesca came to my rescue late this afternoon and dropped in for a surprise visit on her way home and offered to take me for a short walk, bless her. It was so lovely getting some fresh air although I could soon feel my legs tiring – worth it though. I had an even bigger surprise when we arrived home to discover that my brother Jason and his wife Chery had just arrived unexpected to tell me all about their short break in Paris and Euro Disney this week as well as baring a gift of some Parisian Chocolate. Thank you!


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