Hi everyone,

Nautical Adventures: 

Thanks to everyone who helped out at the sailing afternoon at Priory Lake on Friday. We had a lovely afternoon, the sun even shone and there were opportunities to sail, canoe and walk around the lake. This was all rounded off with coffee and cake courtesy of Elva and Hilary who ensured a warm welcome as we returned from our various outdoor endeavours. 

Many thanks to Bedford Modern School and Elva for arranging yet another successful and enjoyable afternoon. The annual Sailing event is a real treat and a unique opportunity for us.I know many of us really look forward to it each year. Thank to the Bedford Modern Sixth form students, to the team of BMS instructors for enabling so many of us to have such a wonderful experience.



Allotment:

In a couple of weeks we're hoping to re establish our allotment gardening club. This is very exciting and we think we've located a great new site, with a shed, raised beds and maybe even a poly tunnel. Sessions will probably take place on a Thursday morning from 10.30am- 12.30pm. If you'd be interested to be involved let me know. Members of the local Park Rotary club are kindly planning to clear and prepare the site for us over the next couple of weeks and then we can begin growing....

Thanks to Jackie for writing her 'guest blog' last week about the processes for applying for and being awarded a blue badge for the car. Many people commented on how useful this information and Jackie's experience had been. If anyone else has an experience or information they think might be useful to share please get in touch and we can look at adding it into the newsletter as a point of interest or as a blog. Remember you are all 'experts through experience' and between us all we have a wealth of knowledge to share and support each other. 

Jackie mentioned in her blog that Age UK might be a useful contact to assist with completing forms and benefits. The Carer's in Bedfordshire Navigation Service: 0300 111 9090 is also very useful and The Village Agents can also help people in rural areas to complete forms and gather information through their Just Ask Scheme: Freephone 0800 039 1234 and the Community coordinators offer a similar service within Bedford and can be contacted on the same number as the Village Agents.

With best wishes

Sarah Russell, CEO

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Margaret- Anne's Blog:

Blog 41: What a neurologist learned from his patients.
May 11^th
I was over at my daughter’s house a couple of week-ends ago and found a copy of the Times newspaper.  (April 26 2019). In it there was a really interesting article written by the famous neurologist Oliver Sacks. He was British but worked in the USA. He died in 2015 but this essay has recently been published. I have followed his work for a long time and was particularly interested in what he had to say about music and dementia. Those of you who have seen me doing a presentation may have seen the clip about Henry – a gentleman in a nursing home in America who appears to be in an inert state, unresponsive and unable to communicate with the world. He is then given an iPod (it’s an old video) and suddenly comes to life as he hears his favourite singer – Cab Calloway. The music triggers speech and the clip ends with Henry talking fluently about his childhood and his great love of music.

Anyway – in  this article Oliver Sacks reflected on what he had learned over his 50 years of working with dementia in American old-age homes and chronic hospitals. Isn’t it interesting that in America it is the neurologists who are looking after people with dementia? In the UK it is the psychiatrists and the neurologists seem to more involved with research.  His reflections were surprisingly hopeful. I would just like to share a few of them with you today, as well as some knowledge which was new to me. I always like learning more.

The first thing I learned was that Alzheimer’s disease usually starts with very specific symptoms such as falls (as described by Wendy Mitchell in her book which I wrote about in my last blog). This is why it is often mistaken for something else, such as a stroke or a tumour.  He said that, in his experience, he found that it was more common than not for the person to be aware of their condition very early on. I feel validated that someone as knowledgeable as Oliver Sacks should say this. I have long felt that this is so but the common story is that people are in blissful ignorance and it is their care partners who realise first. He says “ The sense that everything is lost with a diagnosis of Alzheimer’s is all too common among neurologists, as well as among patients and their families. This may give rise to a premature sense of impotence and doom, whereas in fact all sorts of neurological functions seem remarkably able to persist relatively intact”.

He observed that there were many ways in which the person attacked by dementia may adapt and react and even help themselves. He gives an example of a lady who found it increasingly difficult to make sense of a clock or watch because of her dementia. She decided off her own bat to switch to digital clocks and this solved the problem and she remained able to tell the time for another three months. I think this is something to think about. We are many of us using various technological devices to remind or to keep safe. They may well solve a problem for a time but cannot, in the nature of things, ever be a permanent solution. But we should not see this as negative. Surely the time when it helped was valuable time? It was a blessing for as long as it worked.
Another quote. “People with Alzheimer’s may remain intensely human, very much themselves and capable of normal emotion and relationships until quite late in the illness……. The relative preservation of the personal allows a great range of supportive and therapeutic activities that have in common that they address or evoke the personal. Religious services, theatre, music and art, gardening, cooking and other hobbies can anchor patients despite their disintegrations and temporarily restore a focus, an island of identity”.

I think that this is what we are doing in our various groups at Tibbs. We are providing an island of identity in which the real person can reappear. The after effects are beneficial and the person is likely to feel good for some time afterwards. But the effect cannot be permanent because of the neural deterioration. We are aware of this. We know that the person we see in the groups is not the same person as the care partner sees in the long hours at home. That is why we provide our Encompass groups for care partners and the one to one Counselling service. That is why we try to provide an encompassing, supportive community for all who find themselves on this difficult journey.

Oliver Sacks was only too aware of the situation in which care partners find themselves. He says “Caring for someone else. Can involve back-breaking physical exertion as well as a constant, almost telepathic sensitivity to what is going on in a mind now less and less able to communicate its thoughts, less and less able to have clear thoughts. People with dementia may get terrifyingly confused and disorientated. Such a burden can make the caretaker ill with stress. As a physician, I see this all too often”.

Oliver Sacks’ 50 years of practice meant that he did get it. He understood what it was like to live as many of those in our community do. We who work at Tibbs get it too. And we try to stretch out caring hands to everyone as well as providing groups which are “
 
PS. I need to explain that, after struggling for a long time with the difficulties of the word “Carer” and trying various different alternative expressions in these blogs, I have finally settled on the word Care Partner. This title allows us to retain the role of spouse or child or friend while acknowledging the second role of being a carer. My thanks to Wendy Mitchell who uses it in her book. Having read it recently I have decided to follow her example.