Guest post: "I have early onset Alzheimer's, but I still have a lot to contribute"

[MumsnetGuestPosts]

Two years ago, the word Alzheimer's had never entered my vocabulary.

I had always been renowned for a brilliant memory. But then it started to let me down – badly. I'd forget the simplest of words in meetings. I'd recognise people in front of me but couldn't put names to the faces I'd known for years. The worst episode happened at work. I came out my office one day and had no idea where I was, or who all the voices around me belonged to.

When I received the diagnosis of early onset Alzheimer's in July 2014 I was bizarrely relieved – I finally had an explanation for what had been going on.

Despite how my life has changed over the past 18 months, I try to remain positive. For me a diagnosis has meant adapting to the challenges thrown at me. I have had to accept that changes need to be made to compensate for the bits of my brain that no longer work as they should, and I know that I'll have to continue to adapt as the disease progresses and new problems develop.

I have a monthly calendar that keeps me in order for the future; I have a weekly calendar on my fridge that tells me what I'm doing each day; I have alarms going off all day telling me it's time to do things such as take medication. I write a daily blog called Which me am I today? which acts as my memory for all the things I've done.

Most of my days are fair to middling, but on bad days it's like a fog descends on my brain. During these times of confusion I have to work really hard to remember the day of the week and what I'm supposed to be doing. This feeling I liken to the process of untangling a necklace. If you're feeling calm you can sit patiently and one by one untangle the knots – or slowly work out the reality of the day. But on the bad days it's like when you're feeling impatient and the necklace gets even more tangled and knotted and you can't put it right.

In these moments I have to tell myself that it's not me, it's the dementia. I remind myself that the fog will clear eventually, and until then I'll sit quietly and wait. It's a bit like a game of chess – you patiently wait for your opponent to make their move and then try to out manoeuvre them.

It's often other people who make life difficult - they struggle to see past the diagnosis. That's why I write my blog – to show people that I still have opinions, and can still articulate them.

People forget that those of us with early onset dementia are at the beginning of a journey, not the end. We still have a lot to contribute to society. We haven't suddenly lost the ability to have hobbies, to speak our minds, to try to improve our futures or the lives of others. Writing my blog, speaking at events and being involved in projects around the country not only raises awareness about dementia, it helps to keep my brain alert and functioning better than if I gave up and allowed others to do things for me.

Of course, I still have fears about the future. I'm concerned about losing my independence, which is why I develop strategies around the house to enable me to continue living alone. I also worry about going over the edge into a world I no longer recognise. I try not to dwell on this though. I know I have no control over it.

My worst fear is no longer recognising the two most important people in my life – my daughters. I tell them to make the most of today. I reassure them that, no matter what happens, the deep love I have for them will remain.

No one knows what's round the corner, so I focus on the here and now. Worrying about something I have no control over is a waste of emotion, so I do my best to be content in today's existence. Tomorrow will come soon enough.

[Mner]

I carry the gene for huntingtons disease and whilst I'm not symptomatic yet, it's only a matter of time before the symptoms start to show.

Thank you for your post. I'm too scared to think of the far future but your post gives me hope for the not so far future.

[BeautyGoesToBenidorm]

Mner, I'm being tested for the Huntington's gene myself. Here if you need a friendly ear

[ABitBemusedToday]

I have a type of early dementia due to MS, and like you I was so clever! I miss that part of me and I love off my nerves with trying to keep up with a failing memory. I wake with a jolt and sense of panic that there must be something vital I've forgotten, which is most unlike me (to either forget or to panic like that).
I somehow manage to 'trick' people into thinking I'm normal but a lot of the time I struggle to find my words and have a much more limited vocabulary than before. I miss the old me!

I also keep a journal so my children can share memories with me because I won't be able to remember any of it. It's lovely actually, I forget so much and then look back over my diary or photos and have a great trip down memory lane.

I love your fight and what you said about being able to take on new interests and hobbies.

[Mner]

Beauty also here if you need a chat, and I hope so much that you get a negative result. When do you find out?

[HelpfulChap]

Absolutely horrendous disease. Dreadful enough getting demantia in old age but the thought of 'working age' dementia fills me and many other fifty-somethings with dread.

I know if is a tiny percentage of the population that develops it (circa 0.1%) but if you are one of those it must me a living nightmare.

The OP has my admiration and sympathy.

I only read on Saturday that scientists think they may have found a drug that may prevent Alzheimer's but I think it is some way off being fully developed.

[HelpfulChap]

ABitBemused

Lovely post and I feel for you. Have a lovely day.

[LuckySantangelo1]

Mner and beauty I also have the HD gene. Am also mercifully not yet showing symptoms. Beauty I hope your test is negative.

Wendy thank you for the article. You write eloquently.

[BeautyGoesToBenidorm]

Lucky, what I said to Mner goes for you too - always here for a chat. There are more of us than I thought!

[CMOTDibbler]

You write so eloquently Wendy. My mum first showed signs of dementia in her early 60's, but unfortunately her form of dementia took all her speech and language first, so she's never been able to understand that she has dementia. I wish she'd had the chance to know what was happening and make plans.

[OhYouLuckyDuck]

Going back 7 years, somebody I knew told me that they had early onset dementia. I was suitably sympathetic but didn't really know what to say. 7 years on, they are completely healthy and are leading an active lifestyle and are now working as a teacher having retrained. Meanwhile, I am very sceptical that they were telling me the truth, it's pretty unlikely isn't it? I've never voiced my suspicions but I don't see how it can be true.

[HelpfulChap]

OhYou

That was a blatant lie you were told.

If that person had early onset (the terms young onset or working age dementia are more accepted now I'm told) 7 years ago their memory would be severely impaired by now.

Why they would feel the need to lie who knows.

[MerryMarigold]

You have a wonderful attitude, Wendy. It's amazing to see so much fight and yet surrender and acceptance. Many people with different life limiting situations could learn from you.

[OhYouLuckyDuck]

Helpful I thought as much, though obviously I didn't know it was such a blatant lie at the time. They even asked me to keep it quiet because they didn't want their service users finding out about it. Very bizarre.

[ABitBemusedToday]

Thanks Helpful

[HelpfulChap]

There was a chap with young age dementia on TV the other day (59) almost overnight we couldn't tell his left from his right.

Hideous disease. Around 8% of people over the age of 65 will get full blown dementia. A sobering statistic.

[midnightlurker]

From someone whose mother has this - spend all the time you can with your children. Share life with them even when the fog is there nearly all the time. One day, my parents came to visit and my mum was no longer 'her'. In the time before that, she had been in contact less and less. So much precious time lost. Time when we could have recorded stuff for her grandchildren to be, written down memories. Done things together we had always planned to do. I have no videos of her. Nothing to show my children what a strong, independent lady she was. She was embarrassed by the dementia but I never minded repeating things. Time is so precious.

[ABitBemusedToday]

Thanks for that midnightlurker. I am embarrassed by my memory and loss of the old self, and I know I now come across a different person than I know I am in the core of my being. I get frustrated by that and it is nice to have on record how I once was, so they can always know the real me. What you said makes great sense and gives me renewed courage to keep on keeping on!

[ABitBemusedToday]

It also give me comfort that you didn't mind the forgetfulness and the repeating self. I assume people mind as much as i do, so that information gives me hope.

[midnightlurker]

No one minds except you - only strangers who don't know.

If I get it, I will record everything my children might ever want to know about me, them, my parents. Information, medical info, stories told and songs sang. I will make them photo albums, collate family videos. I will buy them tiny presents and cards for birthdays in the future to give comfort and love when I no longer can - then leave those things with someone I trust to deliver them. I will write letters to them and to their children, even if they are not yet born or thought of.

[HelpfulChap]

My dad, my aunt and my wife's uncle all had dementia. I know what your loved ones are going through. I know that they are proud of you and love you as much as they always have.

[TheSteveMilliband]

Duck, a word of caution re your friend. Whilst it is unlikely she has dementia if she is functioning so well 7-8 years on, you don't know how it was diagnosed. In most dementia there are no 100% specific tests, it is not impossible that she either had a scan showing an abnormality (but with symptoms yet to present) or that it was felt she had dementia on the basis of her symptoms but the diagnosis was (in retrospect)!wrong. A degree of memory impairment is not that uncommon and is linked with various other symptoms- stress, anxiety, depression as well as physical illness. I wouldn't be as certain that she is lying.

[Cool1Cat]

A Bit Bemused I miss the "real" part of me too, but my friends walked away when it went. I look normal and like those doubting the "well" dementia" sufferer - never judge. I look normal but have chronic pain. This means loss of grey matter in the brain and having a progressively more sensitive nervous system. People like me are not always aware of our behaviour, which is a bit Huntingdon's. I am working age and if working age dementia sufferers get compassion behaviour regardless why can't we? I just accept I won't be believed and if I try to be normal I can't do that either. People don't realise any of these things can happen to them.

[OhYouLuckyDuck]

TheSteve thanks. I'm not confronting her about it because, if she was lying, there could be some kind of mental health problem going on and I think it'd be counter-productive.

[Cool1Cat]

OhYouLuckyDuck is someone else's medical status actually your business to comment on let alone confront about ie. "judge"? You are not her doctor are you? I would say none of your business, unless they approach you about it themselves. It's amazing how people think they have a right to interfere.

[OhYouLuckyDuck]

Cool I care about her. If she's going through a rough time then I'd like to help, clearly it's none of my business to care.