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Please give me advice/experiences with early onset Alzheimers

30 replies

FeelingUnsure99 · 04/08/2024 18:06

I've namechanged just because some people know me irl on here and I don't want this thread to be outing - for the privacy of the other person concerned.

My oldest friend told me in August 2023 that she has been diagnosed with EO Alzheimers. I've never seen her all that often - once or twice a year - but it still came as a huge shock and I would say it's been the saddest news I've ever been given, way over-shadowing the deaths of both my parents.

She was 61 then. Since then I've seen her twice and the illness wasn't much in evidence but some signs were there (and infact, thinking back, the signs were there in our previous recent meet-ups over the past couple of years but she wasn't diagnosed then).

When she told me, I was one of only two people who knew apart from her immediate family. I have tried to step up and make the most of the time we have left while she is still OK and have messaged and WhatsApp'd a few times suggesting dates. The messages are marked as read but she hasn't got back to me (whereas she always would with enthusiasm before, we had a fairly equal relationship in terms of getting in touch and arranging lunches/nights out).

So now because there has been silence for months, I am worried that things are going downhill very fast for her.

My question is obviously, how fast does the disease progress in EO? Will I be bothering her by continuing to message? Will she find it overwhelming? Is she likely to still know who I am? Feeling very uncertain about what to do now! My instinct is to phone her, my fear is that she won't know who I am or that it will cause her anxiety.

I don't know exactly when she got her diagnosis (I asked in August 2023 but I don't think she remembered the date or exactly how long it had been) but I reckon it was up to 9 months before then.

Thank you if you can offer any insight.

OP posts:
SinisterBumFacedCat · 05/08/2024 13:59

My DM was diagnosed at 64 but symptoms started 2 years prior. She lived independently (with a lot of background help from me and Uncle) for another 2 years then suddenly had a rapid decline (when I caught Covid and couldn’t visit) and she basically fell off a cliff edge and I had to find her a care home, which didn’t work out and now she is in her second care home. I basically dread visiting her now, she gets super anxious and starts crying and screaming no matter what I do. (I have tried, reassuring, going along with delusions, distractions, nothing works). But I visit because I miss my Mum. I also wish someone would tell me where we are on this “journey” (I hate that sanitised phrase so much!) and what to expect but no one does.
Regarding your friend please ring, don’t text anymore. She will appreciate it and her carers/family will also, it will be a good distraction for them. Texting is out the door. Early on I noticed Mum posting updates on Facebook that made no sense, but she was still capable of going out for a coffee and a chat no problem. Early 2019 was when I noticed it in Mum (her partner died so he may have inadvertently masked her symptoms for a few years) September 2023 she went into a home. So 4 years ish.

FeelingUnsure99 · 23/10/2024 19:31

I wanted to update this thread with thanks to all who replied to me originally.

My friend messaged me a few weeks ago and invited me out for lunch (which she obviously remembered somehow). We had a great afternoon and went for a long walk afterwards. She was changed a little bit and I noticed a few oddities in what she said and did, but then I know about her diagnosis. From the outside you probably wouldn't have known anything was wrong.

Shortly afterwards I got a text from her partner, so at least I now have his number.

I really am grateful for all the replies from fellow MNs, thank you.

OP posts:
Muchtoomuchtodo · 23/10/2024 19:32

Thanks for updating @FeelingUnsure99

I’m so glad you managed to see your friend and can keep in touch going forwards.

Interested in this thread?

Then you might like threads about these subjects:

FeelingUnsure99 · 23/10/2024 19:33

sorry, should have said lunch out for my birthday.

OP posts:
GettingStuffed · 23/10/2024 19:40

One thing about Alzheimer's that's not been mentioned is that seeing visitors can really help in the early to mid stages. My MiL had it and even 6 months before she died she'd perk up with visitors, she'd chat to people even if what she was saying didn't make sense, but when they left she'd relapse into her almost catatonic state.

Could you just pop in to see her, cakes are usually appreciated.

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