In New York

In New York

Sunday, 1 July 2012

Blog entry June 23rd 2012

“This is not the end, it is not even the beginning of the end, but it is perhaps the end of the beginning."


So here we are, three years on and so much has changed. From the word go, our strategy has been to maintain normality as much as we could and we succeeded, I think. It was the best approach, especially for the children. But in recent weeks we have had to accept a new approach. Phase one is over now. We have moved on. We are not in the final phase – but we have definitely reached what I would call Phase two. Driving Roch home from the Hospice on a hot, sunny afternoon in May it suddenly occurred to me that the time has come to accept that what was normal family life is gone forever and we need to make some changes. What am I doing, I asked myself? I need to spend more time at home, less time in work and less time worrying about work. I need to get my priorities right. He needs more care now, let’s face it.  His mobility is getting less and less. Once he hated the rollator, now it’s become his best friend.  He uses it to move slowly round downstairs. The sticks are a tool of the past. The electric wheelchair is coming into its own. Transferring from chair to car is more difficult, but do-able. A change is happening in his arms. They are rapidly losing strength, which means he is able to do less and less. I don’t like leaving him alone in the house. He certainly can’t prepare any food for himself. The most he can do is make an espresso and light a cigar (hurray for the Nespresso machine!).

Showering, dressing, washing his teeth – all these daily tasks are either beyond him or exhausting for him. So we have decided to make some changes. From the beginning of July, I go back to shift work. In practice I will work three eight hour shifts in nine days. At the end of my shift, I hand over and leave. More time at home, less stress in work. Less money, but whatever – priorities. We are trying to arrange self-directed care, which would mean the local authority paying for carers who are employed by Roch to look after him when I am in work. You see what I mean by phase two?

A few weeks ago, we made the trip to Exeter to bring Kate back to London for the summer. We decided to make a weekend of it and booked into a Premier Inn for one night. I’m getting used to the drive now. It’s hard for Roch, he loved driving. I had booked a room with disabled facilities. It was on the first floor, but that was okay, because there was a lift. Awkward door from lift lobby into bedroom corridor, as it had to be opened inwards and you had to use a card key, but with some fumbling and manoeuvring with the wheelchair, this was manageable. The room was your average Premier Inn, basic but spotless and the bed looked inviting, if a tad low. Here is where I made my mistake.  We had some doubts about whether Roch would be able to get up from the bed but we decided to be optimistic and hope for the best. What I should have done was ask whether we could have another mattress, or if there was another room with disabled facilities available, with a higher bed. But no!

We spent a pleasant evening with Kate at a local bar/restaurant where the staff were very helpful and provided a ramp to an area where we found space at a table.  I think we both slept well and the lenor bottle came in very handy in the morning, so Roch didn’t need to get out of bed until we were getting up.  The moment of truth. Sitting on the edge of the bed, he tried to stand, to transfer into the wheelchair – but his arms just couldn’t give him the strength. I tried to help, push-me-pull-you antics galore – but we just couldn’t do it. Nothing for it but to ask for help. You might think that’s easy but it ain’t. Once we had him dressed, I called Reception and they sent up a very helpful young man, Anthony – who had been on a ‘moving and handling’ course. Between us, we had him up in no time. Anthony proved invaluable for the rest of our stay – and took good care of us during breakfast and afterwards. Roch was tired and needed to rest for a while and they let us stay beyond normal checking out time. It was a good lesson, especially in advance of our proposed holiday in August.  My list is begun and I am adding to it all the time.


  1. Hi Deirdre - it's hard for me to read any posts these days - or any of the forum threads - as things are no longer the same, and I'm no longer the same.
    I've continued to write about what's going on with us on Carol's blog - but I'm aware of how hard that must be for others to read as well. Sometimes I feel a bit like the grim reaper - that spectre in the future for others who haven't yet gone as far as we have.
    This post brought back so many memories for me -including our own infamous stay in a Premier Inn disabled access room!!
    I wish you and Roch well - preparation, preparation, preparation - those were the words we learned to live by. Keep as many steps ahead as you can - I do hope everything works out for you both to have a great holiday next month.
    All the best - Mike xx

  2. have you looked at the continuing care option, the hospice helped me get it and it's NOT means tested. Additionally you don't have the stress of being an employer and the hassle of holiday or sick cover