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Alzheimers - an insiders view

(17 Posts)
Liz46 Wed 23-Oct-19 19:05:48

Yes, The Alzheimers Society helped me with my mother.

My very best wishes to you Izabella xx

Izabella Wed 23-Oct-19 19:01:00

Also worth a read.

www.alzheimers.org.uk/dementia-together-magazine/june-july-2019/book-group-dear-alzheimers-keith-oliver

And kittylester is quite correct. The Alzheimers Society is of great help. We have a support worker who is inspirational. However, I would say to everyone that you have to fight for every darn thing.

Your supportive messages have been a joy to me. Thank you all.

Yehbutnobut Wed 23-Oct-19 07:30:13

Try reading Someone I used to know by Wendy Mitchell.

It follows her own story after a diagnosis of Alzheimer’s. It is truly inspirational.

Willow500 Wed 23-Oct-19 07:12:37

What a tragic story sad I do know your situation Izabella and admire your positivity, articulate and humorous posts on GN - it's good to know you have the support of your family.

Sadly it's all too easy to see someone's changing behaviour as 'just their age' and often be irritated by some of their idiosyncrasies - it happened with my own parents and I will forever feel guilty that I didn't recognise the deterioration earlier. Early onset dementia is even more devastating both for the sufferer and their families - to have no support at all is dreadful so it's good to be made aware in whatever ways possible.

I agree with kittylester that the Talking Point forum is invaluable with a great deal of knowledge and support available.

Nortsat46 Tue 22-Oct-19 22:58:47

Bravo Izabella, thank you for your thoughtful post and very useful and interesting link.

Wishing you many, many good days. ?

humptydumpty Tue 22-Oct-19 21:28:56

Izabella I saw an encouraging story today: apparently an American company think finally they have found a drug which can slow the decline in Alzheimer's, though still early stages at present

www.bbc.co.uk/news/health-50137041

kittylester Tue 22-Oct-19 20:53:52

Anyone supporting someone with any form of dementia will find lots of support from the Alzheimer's Society. Especially the on line forum called Talking Point.

Sorry that I bang on about AS but they are brilliant!

GrannyGravy13 Tue 22-Oct-19 20:02:46

Izabella you are an inspiration with your posts, we have had several members of our family with Alzheimer's and Vascular Dementia and your posts are always a joy to read.

crazyH Tue 22-Oct-19 20:00:06

Thankyou Izabella and long may your lucidity continue.

flowers

Marydoll Tue 22-Oct-19 19:55:09

Izabella, I read the article this morning and was shocked and saddened at the barriers and brick walls this lady's friend encountered trying to support her.

It took me years to get a diagnosis for my mother, as she was very good at covering up and even fooled her own GP.
It was only when she was admitted to hospital with a broken hip that she was eventually diagnosed.

I do read your inspiring and honest posts on the other threads and have great admiration for you.

Granniesunite Tue 22-Oct-19 19:20:50

Thank you Izabella my dh has Alzheimer’s and I am trying to find ways of motivating him.

I gave him a writing book as he loves to write so I’m hoping that he “takes” to that.

It’s so good to see you posting on here and battling through it

My best wishes to you.

BBbevan Tue 22-Oct-19 15:48:21

Thank you Izabella. My BiL has recently been diagnosed with Alzheimer's, although we all suspected it for a while. I will pass your article to my sister.

Luckygirl Tue 22-Oct-19 14:47:39

Thank you so much for flagging this up Izabella - and for doing so when others might have sunk into self-pity. Admiration to you from me.

I think the article you linked to is very good at highlighting that no-mans-land between wellness and illness when it comes to dementia.

The social worker dealing with my OH keeps saying he has capacity - and indeed he does in some aspects of his life, for example if you were to ask him whether he is OK about being in his nursing homes he could indeed say "no, get me out of here", or, as thankfully he does, "I like it here."

But anything to do with money, bills etc. he does not have a clue about. The SW went in to him the other day unbeknownst to me, and asked him to sign a form, which he did - he had no idea at all what it was, and began to get anxious about it after she went.

Forms and tick-boxes just do not cut it here.

GrannySomerset Tue 22-Oct-19 14:13:28

Thank you for this, Izabella. DH has Parkinson’s related diminishing cognitive function and I needed reminding how hard it is for him. I tend to regard it as one of the trials of my life rather than his, which is quite wrong of me, and your posts do pull me back from thinking it is all about me, when it really isn’t. Of course it is a problem for both of us and it’s important to remember that.

MawB Tue 22-Oct-19 13:54:46

Thank you Izabella .
Saddened by my DD’s MIL’s decline I often wonder what her “younger” fitter self would have made of it and truly grieve at the gradual eclipsing (is that a word?) of a vibrant and amusing personality.

kittylester Tue 22-Oct-19 13:45:38

Brilliant, izabella. Any awareness raising is worthwhile and this article puts it very well.

Izabella Tue 22-Oct-19 12:46:40

I post fairly regularly elsewhere on GN and rarely venture into it wider arena these days. Those who 'know' me are aware of my diagnosis of early onset Alzheimers, and my slowly but increasing difficulties.

However, a friend sent me a link this morning to an article she had been sent and it resonated so much I thought it was worthy of wider discussion. See mol.im/a/7598113

I can identify so well with post it notes, forgotten appointments, disorganisation - whilst still (at the moment) often appearing more or less ok to the outside world.

I know so many people struggle so very much caring for relatives with varying types of dementia and that is the enduring worry I have for my loved ones at the moment. However, there seems to be very little from the sufferers perspective - the awareness of skills and abilities being slowly eroded, words and meaning fading, some friends being unable to cope with my developing 'differentness' and joining the ranks of "the disappeared" plus social horizons shortening and an increasing risk of social isolation.

Yes I have a great deal of support and that is keeping me more or less functional and keeps me motivated, although there are those who tell me both are becoming more complex as time goes by.

Insight and professional knowledge is a double edged sword, It helped me access an extremely early diagnosis, but I also know well the path I have found myself on. Many of my current feelings and experiences were indeed part of an earlier decade when experiencing and surviving cancer, but this time with no cure or effective treatments it feels very different.

I have now losing my impetus but just wanted to raise some level of awareness.