Life has moved on somewhat since I left hospital at the beginning of March, in ways that are both positive and negative.
Very much on the plus side is that I have been linked with Weston Hospice Care, which opens up a whole new layer of support for us. I am currently enrolled at the hospice on a twelve week programme of activity sessions which, although very gentle in content, are meeting a need within me. I can’t put my finger on quite what is so special about the sessions as the activities we engage in are very low key (we had owl ‘appreciation’ this week, and there is only so much fun that can be extracted from having an owl sit on your arm for a few minutes). However it is a place where I am known by name and I don’t have to explain about my needs or apologise for my condition. There are just seven of us on the session I attend, all facing life limiting conditions, and it is simply delightful.
This week, for the first time, I decided (with Sally’s encouragement) to catch a bus to get me home rather than have Sally drive an hour’s round trip to pick me up. It is a bus journey that you book in advance and specify where you would like to be picked up from and delivered to – a sort of Uber bus. As long as you put the right address in it is a seamless service. Unfortunately we didn’t put the right address in and I had some difficulty explaining to the driver that the place she was dropping me off definitely wasn’t where I lived or wanted to go.
One of the things that upsets me the most about my decline is the way it sucks Sally in too, and dictates and distorts how she spends her time. She would like the freedom to go on a bike ride or meet up with friends, but before she can do that she needs to arrange care for me. Similarly, when I need to be driven to meetings (I have couple of trustee roles which involve regular face to face meetings) she has to find ways of spending the down time between delivery and pick-up in places or circumstances which don’t necessarily fit her agenda.
The good news is that I now have a carer to look after me one day a week, with the express purpose of giving Sally some recovery time and a chance to do some of the things she would otherwise be robbed of. Interestingly I am discovering that, if properly focussed, this time can also help me regain a sense of independence too. This week my carer and I went to a garden centre and bought plants that I needed for our garden. This was something that in the past I might well have done without Sally, and it felt empowering to be back in that place once more. It wasn’t a total respite though for Sally as she still had to plant them in the ground later that same day, but it was a start.
My sessions at the hospice have answered one question that has bugged me for years. When I was at school we ran Christmas parties for old folks and one of our number, who was an excellent pub pianist, bashed out songs for the oldies to sing: things like The White Cliffs of Dover and other war time classics. What, I used to wonder, will be played when I am the recipient of such a largesse. Well, I now know the answer: music by Eric Clapton and Queen. I did smile wryly though, given the context, as we all joined in with Knocking on Heaven’s Door. The music was switched off before we got to Another One Bites the Dust.
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Hi Ian, I’m reading this while sitting in Narrowboat Noggin. Our brief trip on Hope changed our mind about “pram hoods” for the driver, especially as we were either getting rained on or sunburnt, in my case. As our existing cockpit cover is the same as the one you used, it has more holes than a colander and is 50% duct tape. We will put the money for its replacement into buying a folding hood. Thanks for the demonstration on Hope!
Stephen (and Alice).
Don’t try travelling with the hood up. It won’t survive the first bridge you encounter 😂
A lovely read Ian. There is an owl in psalm 102.
Good to hear you’re getting some support. I go into care homes a lot and am frequently accosted by the voice of dame Vera Lynn! It’s like they are stuck in a time warp! There are virtually no residents who remember her as a contemporary! So glad they have moved on where you are! One of the homes I go to does goat therapy 🤣. The kids are actually very cute. They sit on the residents laps! Sending lots of love. Xx
Goat therapy sounds fun.
I think by now the homes ought to be playing Elvis. The hospice group are not yet old enough to be resident in care homes.
I think your word of Hope – springs to mind. When we last saw you Ian you weren’t even sure if you’d come out of hospital ! How wonderful that you can have purposeful days out even if you end up in the wrong place !
Ian, your writing over the many years (esp. Christmas letters) always make me laugh! Thx for that…esp your last paragraph…So thankful that you continue to share your journey, as we continue to love you and Sal! Love the owls!!! Thx… hugs n luv from the North!
I’m delighted your sense of humour has not deserted you. Good to hear the sessions are bring you some fulfilment.
I am glad to hear the sessions are proving positive despite the strange selection of music. Love your attitude to look at what you can do and not at what you can’t. You are an inspiration. x
Compared to you Rosie I am only on the foothills. ❤️
A very interesting read as ever, Ian, and good to hear about the additional support for both you and Sally. One sentence stood out for me – “However, it is a place where I am known by name and I don’t have to explain about my needs or apologise for my condition.” That shouldn’t be an exception, should it? I didn’t realise that you ever had to apologise for your condition. I am learning so much from reading your blogs – thank you for taking the time and effort to write them.
Loved your update Ian. Thank you for taking the time to reflect, write and share.
Your blog always inspires me.
Annual conference in a couple of weeks. I’ve been asked to chair some sessions – same old, same old! The team will be wearing bright pink tee shirts which are very fancy. Will miss you there.
Stay well, and lots of love,
xxx