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husband recently diagnosed with moderate early onset alzheimer's

justnej

New member
Jun 18, 2020
5
hi everyone,

my first post - though i've been reading all the excellent support/info for the past month. my 52 yr old husband was diagnosed a month ago with early onset alzheimer's moderate stage. unfortunately, due to covid-19 we received the diagnosis in a phone call from the neurologist. we have contacted our local alzheimer's association but again due to covid it will be some time before we can meet with them.

my husband has been showing symptoms for years, probably 5-7 years and seen so many professionals without a diagnosis. finally we saw the awesome neurologist we have now who did spect scans, neuropsych exam,etc and gave us the diagnosis of moderate alzheimer's.

just wondering if anyone has had the experience of not being diagnosed until the moderate stage, we ( my 15 and 17 yr old daughter's and I ) are really seeing things progressing. he was teaching last year but now is exhausted following our conversations. he also has terrible dizziness and has almost fallen down the stairs several times this week.
we are really worried that he will progress quickly - the neurologist said something about him having a great cognitive reserve that allowed him to mask symptoms for a long time, but that it is probably now exhausted...

any advice about what to expect, progression wise would be helpful..i'm a social worker myself and have some experience with neurological illnesses, but i will say that having it hit close to home has me losing all my professional insight! it is really tough to watch it happening to my husband and some days, when he is having a good day, i almost believe they have the diagnosis wrong...but then that is followed by a day when he hardly speaks and has trouble choosing between coffee and tea....
 

canary

Registered User
Feb 25, 2014
12,844
South coast
Hello @justnej and welcome to DTP

My OH has had symptoms for many years too, although we also do not have a diagnosis. He seems to have symptoms of FTD and his short-term memory has not been affected so he can ace the Mini Mental State Examination.
Nevertheless, he can no longer work out how to shower himself and today he put his shirt on back-to-front and could not work out what was wrong.

Im afraid that working with people who have dementia does not prepare you for when it is your own family member. Many people have come on here and said exactly the same as you. I think that no-one really understands what it is like unless they have had to deal with it day in and day out.
 

Thethirdmrsc

Registered User
Apr 4, 2018
197
Hi @justnej and welcome. This is a great forum for finding things out and asking questions. What I have found, and I am 3yrs in from diagnosis, is that no 2 people show the same symptoms, but there are some similarities. And I echo canary when she says that nothing prepares you for this. This is not a job that most of us would take. I am sure that others will have some better ideas for you, but practicals, make sure you have a POA in place. Good luck.
 

Abbey82

Registered User
Jun 12, 2018
91
Hi, My Dad was diagnosed at aged 58, 2 years ago but we believe he has already been showing signs for around 3 years (only now we look back retrospectively) His original diagnosis was moderate Alzheimers but he also has FTD Front temporal Dementia and has rapidly progressed to now a severe stage. There is a difference in than the Dementia has not touched my Dad's physical abilities, just his mental capacity, he's very strong and fit but incontinent, does know about eating and drinking unless its presented to him, the same with personal care, he has to be shown how to do it, but then he does fight it a lot. He has gone through 3 sections in the last 12 months and were are currently riding out the 3rd one waiting for him to go to a different more suitable Nursing Home who can deal with younger people with physical capabilities.

He first started being confused and unable to tell the time, find things, this moved to agitation, pacing, not knowing where he had been, OCD behaviours, unable to make food & drink, through to aggression, not accepting no for an answer and being physically obstructive. All of this coupled with a very fit and able body is tough.

Its really hard, we've found that a lot of charities like to sugarcoat dementia and how you can 'live well' they don't show the true and real story of those who have faced young onset dementia with almost 2 different sets of symptoms to Dementia in older ages.

My Dad has never been able to live well, the same for the other 8 younger aged people with Dementia in our local group who are now like family.

I'm sorry my Dad's story isn't particularly pleasant but I try and always be honest, My Dad was a sales director, well educated and a wonderful peaceful and calm person, he is longer calm and whilst he is my Dad, he's a different person which we've had to accept. He can be aggressive and he can be obstructive, he knows that he knows us but not in what capacity. This is all in the space of 2 years.

We tried to keep him home as long as possible, we had an extension built and my parents moved in but we could only manage 6 months before he was first sectioned and then ended up in Care from December last year.

I would really suggest that you never take no for an answer, we've been fobbed off a lot, medication and support wise. My Dad is hyper sensitive to medication and there has only been one that has worked for him so far. We have pushed to get where we are now and had to micro manage all situations but we have a good support group that we helped set up.

If you wanted to DM me, I would be happy to offer any help or support and pass on any further specific information you would like.

Take Care.
 

Lilstar

Registered User
Aug 11, 2019
44
hi everyone,

my first post - though i've been reading all the excellent support/info for the past month. my 52 yr old husband was diagnosed a month ago with early onset alzheimer's moderate stage. unfortunately, due to covid-19 we received the diagnosis in a phone call from the neurologist. we have contacted our local alzheimer's association but again due to covid it will be some time before we can meet with them.

my husband has been showing symptoms for years, probably 5-7 years and seen so many professionals without a diagnosis. finally we saw the awesome neurologist we have now who did spect scans, neuropsych exam,etc and gave us the diagnosis of moderate alzheimer's.

just wondering if anyone has had the experience of not being diagnosed until the moderate stage, we ( my 15 and 17 yr old daughter's and I ) are really seeing things progressing. he was teaching last year but now is exhausted following our conversations. he also has terrible dizziness and has almost fallen down the stairs several times this week.
we are really worried that he will progress quickly - the neurologist said something about him having a great cognitive reserve that allowed him to mask symptoms for a long time, but that it is probably now exhausted...

any advice about what to expect, progression wise would be helpful..i'm a social worker myself and have some experience with neurological illnesses, but i will say that having it hit close to home has me losing all my professional insight! it is really tough to watch it happening to my husband and some days, when he is having a good day, i almost believe they have the diagnosis wrong...but then that is followed by a day when he hardly speaks and has trouble choosing between coffee and tea....
 

Lilstar

Registered User
Aug 11, 2019
44
Hi,Justne
My oh was diagnosed last August with early onset, 1 year on and much hadn’t changed other than verbal outbursts. As everyone states no two people with dementia are the same , certainly looking at my oh you would not know he had mixed dementia still works , has a social life . I too am 52 with my husband been a few years older, I got a Alzheimer’s support worker from the beginning who is a great for me to air my probs or concerns I have, if I can give 1 bit of advice is Get the children support if you can , because they are affected as much as us , and I have realised that they do get over looked by everyone , even the professionals. I’ve had my melt down months ago now and come to the conclusion let’s enjoy now x Sending you all a group 🤗
 

justnej

New member
Jun 18, 2020
5
Hi Everyone,

Thanks so much for taking the time to reply -what a wealth of info and support!

An update from our end. We met with the neurologist again this month, he has been awesome and said he'll provide support for the next year as so many supports are on hold due to Covid.

We asked him to provide us with any info about what we can expect - how it will progress etc. He was very blunt and said that his opinion based on the neuropsych exam, the spect scans and his experience is that we can expect my husband to require 24 hour care in the next 3-4 years. It was shocking to hear and while he did say that it may progress slower or faster than that estimate, my husband is already 5-6 years past when symptoms first appeared....

sadly, the last month has not been great, my husband's symptoms are really starting to be evident, he is so tired, falls asleep in the middle of conversation, not that conversation is going well, he has such a hard time following our conversations and when there is any other noise/distraction going on he finds it very overwhelming and almost shuts down. it's so sad to see him struggle to recall words, or use words that don't make sense, if I had any thoughts that maybe the diagnosis was wrong - this month has shown me that the diagnosis is correct.

one thing that is really bothering him is the constant dizziness, it never goes away...the neuro said sometimes early onset alzheimer's can cause balance issues and more physical symptoms ? i wish there was something that could help him with this, he has almost fallen down the stairs several times in the last 2 weeks and it is scary for our girls to see him having a hard time walking straight...

another thing the neuro mentioned was the idea of cognitive reserve, that because my husband was an engineering prof that was teaching up until 6 months ago he must have had a large cognitive reserve, that he had the ability to almost hide the symptoms for years and work around the cognitive challenges he was having, but that when this reserve is gone he'll quickly go to a stage where he would've been without the reserve? has anyone else heard of this? i can't find much about it online...

sorry this is turning into a really long post - but i'm sure you guys understand how sometimes it's so lonely when no one else your age is going through this...

thanks again for all the replies...it helps so much to know we aren't alone!
 

Sarasa

Registered User
Apr 13, 2018
1,481
I don't know a lot about cognitive reserve @justnej but in my understanding the better educated you are and the more you've used your brain the more neural pathways you have. So it's a bit like having lots of extra 'roads'. If you are trying to drive down one and its blocked you can find away round the blockage. If you have fewer neural pathways you're problems become more obvious more quickly as you have fewer options to by pass problems.
I'm sure someone whose studied it more will be along shortly to explain better than I can, but what I know comes from the courses run by the Wicking Dementia Centre in Australia. I can recommend both of them.
 

Abbey82

Registered User
Jun 12, 2018
91
Hi Everyone,

Thanks so much for taking the time to reply -what a wealth of info and support!

An update from our end. We met with the neurologist again this month, he has been awesome and said he'll provide support for the next year as so many supports are on hold due to Covid.

We asked him to provide us with any info about what we can expect - how it will progress etc. He was very blunt and said that his opinion based on the neuropsych exam, the spect scans and his experience is that we can expect my husband to require 24 hour care in the next 3-4 years. It was shocking to hear and while he did say that it may progress slower or faster than that estimate, my husband is already 5-6 years past when symptoms first appeared....

sadly, the last month has not been great, my husband's symptoms are really starting to be evident, he is so tired, falls asleep in the middle of conversation, not that conversation is going well, he has such a hard time following our conversations and when there is any other noise/distraction going on he finds it very overwhelming and almost shuts down. it's so sad to see him struggle to recall words, or use words that don't make sense, if I had any thoughts that maybe the diagnosis was wrong - this month has shown me that the diagnosis is correct.

one thing that is really bothering him is the constant dizziness, it never goes away...the neuro said sometimes early onset alzheimer's can cause balance issues and more physical symptoms ? i wish there was something that could help him with this, he has almost fallen down the stairs several times in the last 2 weeks and it is scary for our girls to see him having a hard time walking straight...

another thing the neuro mentioned was the idea of cognitive reserve, that because my husband was an engineering prof that was teaching up until 6 months ago he must have had a large cognitive reserve, that he had the ability to almost hide the symptoms for years and work around the cognitive challenges he was having, but that when this reserve is gone he'll quickly go to a stage where he would've been without the reserve? has anyone else heard of this? i can't find much about it online...

sorry this is turning into a really long post - but i'm sure you guys understand how sometimes it's so lonely when no one else your age is going through this...

thanks again for all the replies...it helps so much to know we aren't alone!
My Dad was very similar, he managed to hide his symptoms for so long, by the time he was diagnosed, he didn't have much of a clue anyway. He has then has a rapid progression over 2 years so I think the theory about the cognitive reserve is right, like what Sarasa says about the neural pathways.

When I first joined this forum over two years ago, I had lots of questions about how long, how soon, what symptoms, what progression and I have learnt, as I was told at the time, every person with dementia is different and unfortunately our journey has been different to anyone else we have known, with the types of deterioration etc. My Dad can still run a Marathon and can out manoeuvre anyone, but he doesn't know how to make or drink, doesn't understand no, cant work out how to answer a question, how to read a book, how to act appropriately etc.