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Two years on....

JLB1967

New member
Oct 27, 2020
4
So, here I am. As with a previous post, not really sure where to start, but I just felt it was time that I reached out to others in the same boat.

My husband was diagnosed with early onset AZ (mild to moderate) at the age of 64. It wasn't a total shock to me as I'd thought things weren't quite right for a little while, but still it's a hard message to hear. We put POA etc. in place so that's all sorted and planned to do lots of activities whilst we still could (until Covid of course scuppered our plans for this year). I'm keeping my fingers crossed for 2021 as it's so hard not knowing the answer to 'how long before......?' and 'will he still be OK in....?'

In reality, he is still good humored about it and happy, but as we're now two years on I'm starting to notice more changes. He has taken Mementine and Donepezil since diagnosis which have hopefully delayed the progression as much as possible.

From my perspective, I try and keep calm and patient (when inside I'm far from it) when things happen. The hardest thing is knowing that it's only going to get worse and in reality I'm so near the beginning of this journey that I worry if I'm like this now, what will I be like in 3/5 years time. AZ and the menopause is not a good combination it must also be said :)

Anyway I guess I just wanted to write something down as sometimes just doing that makes life feel a little bit better. Thanks for listening.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,202
Bristol
Welcome to DTP @JLB1967. I can't really add anything as my experience is with a partner who has vascular dementia and everyone progresses at different rates. You will find a great knowledgeable membership here, so keep reading and posting. All the best to you and your husband.
 

Buteo

Registered User
Mar 20, 2019
83
Talking Point is a very supportive forum, welcome.
It does feel very hard wondering what the future will bring. My wife was diagnosed with Young Onset Alzheimer's four years ago at the age of 64. Every case seems to be very different so it's hard to generalise. The most important thng is not to be afraid to ask for help when the going gets tough for you - whether it's your local Alzheimer's Society, Carer's Trust, GP, Memory services or social worker - it's essential that you aren't made to feel left alone to cope. That way you can more easily access support, whether it's advice, a listening ear, carers, equipment or respite. It will also be important to access respite - it's the only way to keep going in the long run and have some time to live your life a bit.
 

Poppy44

New member
Aug 11, 2019
5
So, here I am. As with a previous post, not really sure where to start, but I just felt it was time that I reached out to others in the same boat.

My husband was diagnosed with early onset AZ (mild to moderate) at the age of 64. It wasn't a total shock to me as I'd thought things weren't quite right for a little while, but still it's a hard message to hear. We put POA etc. in place so that's all sorted and planned to do lots of activities whilst we still could (until Covid of course scuppered our plans for this year). I'm keeping my fingers crossed for 2021 as it's so hard not knowing the answer to 'how long before......?' and 'will he still be OK in....?'

In reality, he is still good humored about it and happy, but as we're now two years on I'm starting to notice more changes. He has taken Mementine and Donepezil since diagnosis which have hopefully delayed the progression as much as possible.

From my perspective, I try and keep calm and patient (when inside I'm far from it) when things happen. The hardest thing is knowing that it's only going to get worse and in reality I'm so near the beginning of this journey that I worry if I'm like this now, what will I be like in 3/5 years time. AZ and the menopause is not a good combination it must also be said :)

Anyway I guess I just wanted to write something down as sometimes just doing that makes life feel a little bit better. Thanks for listening.
I could ( almost ) have written your post! My husband, now 64, was diagnosed with Early Onset Altzheimers 4 years ago, but said that he knew he had it for a couple of years before that - he’s a retired GP - but I have to confess that I hadn’t noticed! Like your husband, he is generally contented and happy, in fact very affectionate and gentle. His main problem is in his speech which is now rapidly disappearing, but he still likes trying to make me laugh. I sometimes think that it’s rather like living with a large, gentle Labrador!
Our main shared activity has always been walking - we met 20 years ago as Walking Leaders for a walking holiday company - now we just manage to get out for an hour or so every afternoon ( when it’s not raining!), but recently I’ve noticed that his balance seems to be affected, he isn’t able to really stand up straight, and has begun to stumble. So, presumably this is one of the steps down the line in the disease.
He takes Galantamine, Memantine and Citalopram - an anti- depressant. The Memantine was only prescribed earlier this year, but had a huge effect on him - it boosted his mood enormously - he was practically dancing around the room at first - but later he settled into his present seemingly contented self.
Reading has become very difficult now, however, he makes a stab at reading the newspaper online every morning. Recently we have discovered Audiobooks which he enjoys, especially those about the Royal Family; luckily there seem to plenty of them available.
Sadly, his ability to write has now almost totally gone. His attempt in the summer to write me a birthday card was absolutely heartbreaking.
So, like you, I await the future with uncertainty and worry, but I try not to despair. This strange year of Coronovirus has been bizarre and totally unreal, but I am trying to treasure the times that we can be happy together, for who knows what life will be like next year?
 

JLB1967

New member
Oct 27, 2020
4
Thanks for all your replies, it's so nice to know that you're not alone and that others are on a similar pathway to yours.

We go for a walk most days (when it's not raining) but he's not been the most stable on his feet for a little while (almost got me run over in Venice one time but that's another story!) so it never surprises me if he trips or falls.

He has barely lifted a book to read in the past year or so, but continues to read the news online, I suspect this is because there are less words on a page to focus on. Good prompt on audiobooks though, I will see if he is interested in that.

Note to self - focus on the good times and treasure those.
 

Poppy44

New member
Aug 11, 2019
5
Just a few thoughts on Audiobooks - he listens to them on his IPad, through headphones. To begin with we joined Audible - a huge range of books, and then discovered that the local library ( online ) also has a range, much smaller, but of course free. He couldn’t follow the story of a novel, so that was out - not that he’d ever really been into novels anyway - but really enjoys gossipy accounts of life in the Royal Family - he’s reading the sixth one as I write this.
Also, via the trusty IPad, there’s IPlayer and Netflix. He enjoys documentaries, if they’re not too long or complicated, and again listens to them through headphones while I get on with other things.
Then there’s music. He was always a snapper dancer, and taught me ballroom dancing when we met, twenty years ago. I’ve recently dug out some of our old CDs, and play them quietly while we have our supper - there’s sadly no conversation to compete - and sometimes we manage a gentle shuffle or even a wibbly wobbly slow jive around the kitchen while the food is cooking. Just as well that no one is looking!
Best news yet about the vaccine. We’ve been more or less self isolating since March, and although he hates company, as he is so desperately self conscious about his inability to join the conversation, just emerging into real life is something to really look forward to at last.