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Alzheimers

My mum’s deterioration continues.

Whereas just a few months ago she would argue that there was nothing wrong with her memory and try to help with the cooking (she actually thought she WAS doing ALL the cooking), she now seems to accept that she is no longer capable of either remembering, or cooking.

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During the second visit to the memory clinic, the consultant prescribed a pill for mum. This is designed to slow down her memory deterioration. The doctor told us that there was a choice of two pills that would help mum. Because mum’s kidney function does not look great, but her pulse rate was ok, she had to prescribe Donepezil.

“All three cholinesterase inhibitors (of which Donepezil is one) work in a similar way, but one might suit a certain individual better than another, particularly in terms of side effects experienced.” **

I had to ask then, given that the pulse rate suggested mum’s heart function was ok, what the cardiology appointment was for at the end of July (which, by the way has now been cancelled and is causing no end of phone calls to be made to find out why and/or re-book).

Readers of the previous post will know that as the consultant was not aware of that appointment (which came following an ECG mum had had as part of this memory clinic process), we had to hold off on the prescription, and she said would get back to me as soon as possible.

Three weeks on an I am still waiting to present the prescription at the chemist.

Since our first visit to the memory clinic at the beginning of May, we have become aware of many previously unknown support organisations. These however, seem to be seriously undermanned and overworked.

  • An Admiral Nurse phoned me to ask what they could do to help – but as we were at this stage, I could not say. She did however, give me lots of information that I have yet to fully digest. Most of it seems to involve the council and lots of waiting.
  • The lady from Making Space said that she would send off for, and then help us fill in, Attendance Allowance forms – as these were reputed to be horrendous. This she did and the forms arrived two weeks ago. However, getting in touch with the same lady on a day that she is working has been impossible. I eventually presented myself at their office and sought the help of someone else – who will meet us tomorrow.  Even if the help isn’t as urgent as it may seem for my mum, the forms are official forms with a date stamped return date, which is fast approaching.
  • At the memory services clinic itself, I never seem to get the same person twice. When I first became worried about mum’s prescription, I phoned and was told that they (the consultant’s office) were waiting for a reply from mum’s G.P.  So – I visited the G.P. surgery and found that the reply had been sent by FAX the previous week. When I phoned the clinic again and told them that the G.P.’s answer should have been received, I was told that the consultant was on holiday, but that mum’s case would be one of the first dealt with on the Monday (this week).

I phoned again on Monday and left a message with whoever answered the phone.  I called in at the clinic on Tuesday and left a message with whoever answered the phone that was handed to me on reception. It is now Wednesday and I was told yet again that a note had been left for the consultant/doctor to call me to say “yes” or ‘no” to the prescription.

If there’s one thing I’ve learned from all of this so far, it is to begin early (i.e. when you are much younger and more capable of pushing hard for the services you deserve) and to try and avoid June – August, when everyone goes on holiday.

** From: https://www.alzheimers.org.uk/info/20162/drugs/105/drug_treatments_for_alzheimers_disease/3

Photo credit: https://www.flickr.com/photos/118316968@N08/19444505382 – with thanks for using Creative Commons.

Future posts on this subject can be seen here: https://failingtoremember.wordpress.com/

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Following on from my previous post about my mum’s fading memory – https://saturdaywalks.wordpress.com/2017/05/04/memory-test/ today was the day we visited the specialist doctor.

Sharon and I accompanied her to the same place as before.

Mum’s memory function has deteriorated quite a bit since the first visit almost two months ago; not so much that she has no awareness of things around her, but nevertheless, there has been a significant decline. E.g. she introduced me to the doctor as her brother.

So, we were not expecting any ‘good’ news.

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The CT scan she’d had showed nothing more than age-related deterioration, her pulse is perfect (72) and the only ‘bad’ (inasmuch as it’s not a worry for this memory process, but it’s not ‘good’) is that her eGFR1 (estimated glomerular filtration rate2) was only 35. This could be another issue to watch, given that it shows moderate to severe loss of kidney function, but for now I’ll stick to the issue of memory.

The doctor mentioned dementia, but then avoided it suggesting that she didn’t like the word (neither do I) and towards the end of our interview suggested that this was Alzheimer’s, without actually dwelling on that. I suspect that once the paperwork all comes through – that’s what will be the diagnosis.

As part of this process, mum had also had to have an ECG, the result of which is that she has to visit the hospital again on July 31st, to see a cardiologist. Today’s doctor knew nothing about that – but promised to follow it up, especially as the drug she was prescribing for my mum depended on heart rate to a certain extent. She phoned me about an hour later to say that the G.P. was out right now, but that she would be in touch again next week. The medication aims to slow down the memory loss process.

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We were then introduced to the local Making Space representative. Making Space provide specialist dementia care alongside support for sufferers that enables them to stay in their own home for as long as possible. At this early stage, we only required information, advice and guidance. Sharon, the lady we met, was superb and was able to put my mum’s mind at rest and to answer the questions we had brought. She is sending me leaflets to read and more information about the services available to my parents. My job will be convincing my dad to take some, if not all of these up.

Some of the support I will be aiming for over the next few weeks will be to find an Admiral Nurse5 to pick up on my mum; to get my dad to reconsider applying for a Power of Attorney over my mum’s health and finances and to apply for Attendance Allowance on behalf of my mum.

Sharon, at Making Space has promised help with all of those.

References

Photo Credits:

https://pixabay.com/p-544403/?no_redirect

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Readers may have noticed that quite a few pictures of jigsaws have been appearing in my Flickr Stream, which appears below the Archives link – to the right of this post. These have all been completed by me, over a period of years.

I started doing the jigsaws sometime in 2012. Our friends Karen and Dave had invited us to stay with them at a cottage in Derbyshire and Karen had brought one along with her.

I was hooked.

It helped that I’d heard from friends that jigsaws were good for memory retention and brain exercise and as I was getting quite a way into my 60’s, I started scouring the charity shops for examples to complete. Sharon bought me the first puzzle, https://flic.kr/p/dQ8VK1 which almost put me off for ever. It was well-worn to begin with, but I persevered and managed to complete without too much frustration.

 

Studies [..] have shown that keeping the mind active with jigsaw puzzles and other mind-flexing activities can actually lead to a longer life expectancy, a better quality of life, and reduce our chances of developing certain types of mental illness, including memory loss, dementia, and even Alzheimer’s Disease (by an amazing third)(3).

KING

That first jigsaw was one created and published by King, a Dutch manufacturer. I’ve completed many others by this manufacturer since and all have been tricky – even new ones. This is because the card used by King is quite flimsy and many of the pieces fit many of the other pieces – even though they shouldn’t. The boxes are also quite cheaply constructed and I generally have to cellotape the corners to stop pieces from falling out.

RAVENSBURGER

Ravensburger, a German company, have consistently produced well-made jigsaws on good card and which click together in a quite satisfying way. The most recent one to be completed was a scene from a 1960’s village green. https://flic.kr/p/UDQqbb. All of the puzzles have been challenging and all quite colourful.

GIBSONS

Gibsons is a British family run company based in Surry. I’ve experienced a range of quality from Gibsons, but the more recent examples have approached that of Ravensburger.

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I have my own Flicker Album of jigsaws and am also a member of the Flickr Jigsaw Group, which displays a vast array of jigsaw puzzles from around the world.

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Now that I am semi-retired and have more time on my hands, I find myself completing more and more jigsaws. When we visit Spain, I tend to have less time as we are out and about more, but we have a room there where the jigsaw can be left out and sat at for a few minutes at a time. Here in the UK where it is always overcast and dark, I wait for sunnier days or, in winter, make sure I’m sat under the brightest lights (which then bring a problem of too much reflection – but ….).

My board is from https://www.theworks.co.uk/ and folds away whenever I need the space.

Resources

  1. http://figur8.net/dream/2014/03/14/what-are-the-brain-benefits-of-jigsaw-puzzles/
  2. http://www.ebay.com/gds/How-Puzzles-Help-the-Mind-/10000000177633935/g.html
  3. http://www.selfgrowth.com/articles/The_Healing_Power_of_Jigsaw_Puzzles.html
  4. https://www.unforgettable.org/blog/what-are-the-benefits-of-dementia-jigsaw-puzzles/
  5. https://www.ravensburger.com/uk/start/index.html
  6. https://en.wikipedia.org/wiki/Gibsons_Games
  7. https://www.ravensburger.com/uk/start/index.html
  8. https://gibsonsgames.co.uk/

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I took my mum for a memory test yesterday.

She’s eighty-seven.

Sadly, my mum has been slowly losing her ability to remember certain things, over an extended period of time – probably for about three years. She copes with most things on a daily basis, with help! Without my dad, I suspect that she would have tremendous difficulty coping with day to day things like cooking and eating. This isn’t to say that she isn’t ‘all there’, she is: she takes part in discussions (when she can hear – her hearing aid is not always fully loaded and ‘on’) and retains a wicked sense of humour.

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However, despite not wanting outside help (“David, whilesoever as I can manage, I want no one else coming in here to help**) my dad has been asking the doctor if there’s anything they can do to help my mum. [I have to say right here that I have THE very lowest opinion of my parents’ doctor, both historically and presently]. The result, after a fair amount of nagging is this memory test.

Dad didn’t want to go with my mum as he felt that he would get too upset, which I suppose, after sixty-six years of marriage, is understandable. Also see ** above. So, the original appointment having been when we flew to Spain in March, I visited the centre, rearranged the date, and off we popped yesterday.

Word Art

Mum hated the idea of going (I hesitate to say that she was terrified); she accused my dad of going behind her back and of being sneaky (by asking me to go with her instead of him).  Also: “no one told me about this! I’m not losing my memory, I’m ok!” etc. Yet, once there, having been assured for the umptieth time that I would go ‘in’ with her, she was lovely.  She was calm and had no worries. Once the young (very pregnant) nurse had introduced herself and directed us up to her room, mum was the personification of ‘nice old lady’.

elephant-1090828_1280She answered all of the questions as honestly as she knew how and seemed to feel no pressure at all throughout the full hour of questioning. On the standard test, she got 59% (the standard being 85% ish) and for me it was easy to see exactly where she was losing ‘it’. Mental sums and short term memory tasks were very poor, but at longer term knowledge (that is a penguin, that is a kangaroo etc.) she was much better.

She still thinks that she has no problem remembering things (I haven’t had sugar in my tea for forty-five years – yet I’m asked every time we visit) and insists she’s ok with money; but she’s not.

However, she wasn’t fazed by having to go, soon, for a brain scan and then, afterwards, to see a specialist doctor. But those are hurdles to cross further down the line.

What do we hope to get from this?

I’m not sure.

References:

Pics:

Resources

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