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How early does early onset symptoms start to show in someone of 47 years old???

ocean drop

New member
Mar 31, 2022
9
0
Hello everyone,
So I have come here to see if you beautiful people can help me answer a dew questions. Husband was diagnosed with EOA a few weeks ago at the age of 47. Symptoms began 5 years before diagnosis. Now, I have been told that everyones progression is different. Husband had a brain scan which showed PCA. Drs said told him its dementia and then told me its Alzheimer’s when I was alone in the room. Husband asked how long do I have ? Dr said “everyone os different but just don’t thing about that, just enjoy every moment you have”. When I had a chat with him he said that she didn’t want to tell him it was Alzheimer’s as it may be too much for him. I then called the memory clinic chasing the letter she was supposed to send home stating his diagnosis and one of the ladies said, “ah yes this gentleman we were discussing in our team meeting. The letter has not been drawn up yet but just to make you aware a more detailed letter will be given to the GP compared to the one we send to you”. ( 1. Here I am thinking are they hiding something more sinister)? Secondly she asked if husband had done a POA I said no, because he is in denial. And said we will think about it next year. The lady from the medic team then said “Sorry to put it this way, but your husband may not have a year this develops very rapidly”. So I have not received the letter yet which means I am worried sick thinking there is something very wrong( been 3 weeks since diagnosis) and I have been told that the letter has been dictated and dr needs to check before sending out.
So- how do I know its PCA well the all the dr said is the PET scan showed abnormalities of the left side of the brain and some parta have been damaged. I then saw a few words on the letter from radiology and found out it was this plus what she had said. She also mentioned left side of brain has been damaged. So I am in a whirlwind. Medication was offered doprezil ( I think thats how you spell it) but husband refused.I cannot think or do my work bcz I am overthinking what is happening, I am 40 and have no idea what steps to take or how to deal with this. If it will progress rapidly why didn’t the dr say so????? Why did it have to come from the medical team at the memory clinic. I understand everyone progresses differently but can you guys at least see my point???? I am going mad I find that I am unable to cope with the not knowing everything. Please can someone shed some light. Thank you xx
 

MarieD

Registered User
Dec 26, 2021
38
0
Hi I’m so sorry about your husbands diagnoses it must be so scary for both of you.
Please don’t think the worst, if it was anything more sinister the doctors would of told you they wouldn’t keep anything from you.
I would concentrate on the things you can control for now and sit and have a frank conversation with your husband and explain that the POA documents are really for your benefit as much as his and once in place it’s one less stressful thing to worry about .
Explain that he can stipulate that they can only be used if he looses mental capacity ( which may reassure him ) and get them drawn up by a solicitor so he can talk through everything with them first.
I think just try and tackle one thing at a time so it’s more manageable for you both.

From what you’ve said about your husband being in denial and also refusing the medication he’s obviously struggling with the diagnoses and I would think this is why they want to not upset him more by telling him it’s Alzheimer’s.
All I can say from my own experience with my mother is that it can progress rapidly ( but everyone is different ) I think my mother had been a master of hiding her symptoms for many years then when she couldn’t any longer and we realised something was wrong her decline was quite quick and the problem was they have to understand and agree to the POA which is probably why they are pushing you to get it sorted asap.

My mother hasn’t even had a formal diagnoses because of covid lockdown she never had a CT scan and now it’s too distressing for her so we’ve stopped trying we know it’s dementia but not which type. I was obsessed with finding out but I’ve now excepted we’ll never know. What I will say is that the medication has actually help with some of the more extreme symptoms my mother was experiencing so they are worth trying.
Just take one step at a time then it won’t feel so overwhelming .
Wishing you all the best x
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,646
0
71
Dundee
Welcome to the forum @ocean drop.

This must be devastating for you both. I can understand why your husband must be finding it difficult to take all of this in and is in denial and this must make it so much harder for you.

I think you may have been given this link on another thread but thought I’d put it here again. It might be of help to you if you haven’t already had a look at it -


Within that link there is another link to a booklet called Understanding Your Diagnosis. It might be worth either downloading the booklet or ordering it. Perhaps your husband will come round to being able to face reading it.

I also think you may have tried this helpline but I know that other members on the forum have reported that they are extremely helpful and understanding. It might be worth trying them again.

 

Jessbow

Registered User
Mar 1, 2013
4,218
0
Midlands
To make a PO, you have to be deemed to have mental capasity to understand what you are doing . The doctor may have meant that he might not be deemed to hav the same level of capasity in 12 months

I think pretty much all sufferers are in denial, very few 'gt it'- its kinda part of the illness
 

Sarasa

Volunteer Host
Apr 13, 2018
4,836
0
Nottinghamshire
A warm welcome to Dementia Talking Point from me too. I’m sorry your husband’s diagnosis at such a young age brought you here.
I’d try to get POA sorted as soon as possible because as @Jessbow says your husband may lose the capacity to agree to it within the year. Maybe if you say its something everyone should have and do one too he will feel better about it. If possible have as few clauses in it as possible. If you put down you can only use it when your husband has lost capacity you might have problems finding someone to sign something to that effect when you need to use the POA.
 

ocean drop

New member
Mar 31, 2022
9
0
Hi I’m so sorry about your husbands diagnoses it must be so scary for both of you.
Please don’t think the worst, if it was anything more sinister the doctors would of told you they wouldn’t keep anything from you.
I would concentrate on the things you can control for now and sit and have a frank conversation with your husband and explain that the POA documents are really for your benefit as much as his and once in place it’s one less stressful thing to worry about .
Explain that he can stipulate that they can only be used if he looses mental capacity ( which may reassure him ) and get them drawn up by a solicitor so he can talk through everything with them first.
I think just try and tackle one thing at a time so it’s more manageable for you both.

From what you’ve said about your husband being in denial and also refusing the medication he’s obviously struggling with the diagnoses and I would think this is why they want to not upset him more by telling him it’s Alzheimer’s.
All I can say from my own experience with my mother is that it can progress rapidly ( but everyone is different ) I think my mother had been a master of hiding her symptoms for many years then when she couldn’t any longer and we realised something was wrong her decline was quite quick and the problem was they have to understand and agree to the POA which is probably why they are pushing you to get it sorted asap.

My mother hasn’t even had a formal diagnoses because of covid lockdown she never had a CT scan and now it’s too distressing for her so we’ve stopped trying we know it’s dementia but not which type. I was obsessed with finding out but I’ve now excepted we’ll never know. What I will say is that the medication has actually help with some of the more extreme symptoms my mother was experiencing so they are worth trying.
Just take one step at a time then it won’t feel so overwhelming .
Wishing you all the best x
Thank you so much for the reply. I under that the drs wouldn’t keep anything from me but I feel like I was not given enough information like how much of the brain has damaged? Could we get an idea as to what the outlook could be. She was a lovely dr and she found it extremely hard to explain the diagnosis as it seemed she was upset herself having to give this news. So she wanted to keep it at simple as possible. Also is there a chance that the scan may be wrong? She said the brain scan shows ‘symptoms suggesting dementia’ . I just feel like I have been told this life changing news and have no idea what to expect. What do I do now? My husband is still very capeable. He first noticed symptoms around 6 years ago then I started noticing a year ago which is what led me to get him assessed. He just finds it hard placing names to things sometimes , or then looses track in conversation sometimes, he watches movies on mute but stares intensely as if he is watching with concentration. I guess I am just wondering if these are mild symptoms and he had them for 6 years could it mean that he could just stay like this? I find it hard and incomprehedable that he will change. It has stayed at this stage for a long time. He also said to me that he will stay like this. I guess I just need someone to explain everything. I have young 2 children too, what do I say to them? Should I not say anything because husband is ‘ok’ at the moment. I am just sooo confused. Sorry for the long reply xxx
 

ocean drop

New member
Mar 31, 2022
9
0
A warm welcome to Dementia Talking Point from me too. I’m sorry your husband’s diagnosis at such a young age brought you here.
I’d try to get POA sorted as soon as possible because as @Jessbow says your husband may lose the capacity to agree to it within the year. Maybe if you say its something everyone should have and do one too he will feel better about it. If possible have as few clauses in it as possible. If you put down you can only use it when your husband has lost capacity you might have problems finding someone to sign something to that effect when you need to use the POA.
Hi, thank you for your reply. Your reply is also helpful because you have explained ‘he may’ loose his capacity so I have a time frame. I guess its the not knowing part but then I think well he may have another 10 years like this. He is adamant he does not want a POA at any costs. I have even said I will get one too but he refuses point blank. Also do you think it is possible to drs to tell me what stage he is at? He if fully capeable and just forgets words sometimes. There was 2 times where he left the home to go get shopping but ended up somewhere else.
 

ocean drop

New member
Mar 31, 2022
9
0
To make a PO, you have to be deemed to have mental capasity to understand what you are doing . The doctor may have meant that he might not be deemed to hav the same level of capasity in 12 months

I think pretty much all sufferers are in denial, very few 'gt it'- its kinda part of the illness
Thank you for your reply. He is very abled and can do everything at the moment. Please could you if you could, explain how it could progress in a years time, are these changes seen over months? If so what could be the next stage after this?
 

ocean drop

New member
Mar 31, 2022
9
0
Welcome to the forum @ocean drop.

This must be devastating for you both. I can understand why your husband must be finding it difficult to take all of this in and is in denial and this must make it so much harder for you.
Thank you for your reply and link. I have spoken to some helplines but its sort of the same thing. I know what I am asking for is too much- I guess I want a tailored outcome as to what to expect next, how long before I see other changes? Is the scan really showing Alzheimer’s or could it be something else if he is still very abled and just has few memory problems now and then? I have mixed emotions I sometimes have to admit that I may too go in denial. I have just started a new job. Will I have to give it up? If so when? I know answers to these questions only time will tell. I just feel like I have been put in a dessert to fend for myself. From your experience would you be able to give me an insight as to if early onset Alzheimer’s is likely to progress quickly?
 

Jessbow

Registered User
Mar 1, 2013
4,218
0
Midlands
Thank you for your reply. He is very abled and can do everything at the moment. Please could you if you could, explain how it could progress in a years time, are these changes seen over months? If so what could be the next stage after this?
There is no telling. some progress faster than other and some hardly change at all, th there is a big change. Its rarely a steady decline, but when it is, the speed it different for everyone.

Please try & relax bit an live each day as it comes. Your husband may be fine for many years to come with just a little support from you.

I'm 61, I forgt word/names sometimes.

What made you seek a formal diagnosis?
have you had any other opinions- could be many things
 
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ocean drop

New member
Mar 31, 2022
9
0
There is no telling. some progress faster than other and some hardly change at all, th there is a big change. Its rarely a steady decline, but when in is, the speed it different for everyone.

Please try & relax bit an live each day as it comes. Your husband may be fine for many years to come with just a little support from you.
I know, I feel so silly with these questions. Please forgive me! At least I know that the decline may not be steady so that’s something too watch out for. I am going to go with the fact he may well stay like this for many more years to come and I will cross that bridge when we come to it😊 . Xx
 

Cat27

Volunteer Moderator
Feb 27, 2015
12,831
0
Merseyside
I know, I feel so silly with these questions. Please forgive me! At least I know that the decline may not be steady so that’s something too watch out for. I am going to go with the fact he may well stay like this for many more years to come and I will cross that bridge when we come to it😊 . Xx
@ocean drop There is no such thing as a silly question. Ask whatever you want & people will answer.
 

silkiest

Registered User
Feb 9, 2017
636
0
Hi @ocean drop, having more detailed information about the scan unfortunately is unlikely to give you more information. The human body is very strange - some people function normally with a lot of damage and vice versa. Try googling the "Nuns Study" These nuns were followed over years for signs of dementia and the damage found on autopsy did not correlate at all with the symptoms they had.
Maybe you can approach the POA as something to protect the children - if anything happened to both of you together , say in an accident you would need someone to look after them. My BIL lives in Australia with no family over there and they did POA to make sure the children would be looked after if anything happened to either/ both of them. They had each other and also my husband as attorneys.
You will definitely need POA health - he needs to know that if he cannot make his own decisions re his care that doctors and social workers will not involve you without it and may make decisions against his wishes.
Dr's recently wanted to stop mums blood thinners that prevent stroke as she had become anaemic with a small bleed - I could tell them that one of my mums greatest fears when she started thinners was having a stroke. Because of this they decided to manage her anaemia and continue the thinners. Without POA I could not have even had this discussion.
 

MarieD

Registered User
Dec 26, 2021
38
0
Thank you so much for the reply. I under that the drs wouldn’t keep anything from me but I feel like I was not given enough information like how much of the brain has damaged? Could we get an idea as to what the outlook could be. She was a lovely dr and she found it extremely hard to explain the diagnosis as it seemed she was upset herself having to give this news. So she wanted to keep it at simple as possible. Also is there a chance that the scan may be wrong? She said the brain scan shows ‘symptoms suggesting dementia’ . I just feel like I have been told this life changing news and have no idea what to expect. What do I do now? My husband is still very capeable. He first noticed symptoms around 6 years ago then I started noticing a year ago which is what led me to get him assessed. He just finds it hard placing names to things sometimes , or then looses track in conversation sometimes, he watches movies on mute but stares intensely as if he is watching with concentration. I guess I am just wondering if these are mild symptoms and he had them for 6 years could it mean that he could just stay like this? I find it hard and incomprehedable that he will change. It has stayed at this stage for a long time. He also said to me that he will stay like this. I guess I just need someone to explain everything. I have young 2 children too, what do I say to them? Should I not say anything because husband is ‘ok’ at the moment. I am just sooo confused. Sorry for the long reply xxx
It all sounds so stressful for you I’m so sorry it must be so difficult. Could you contact his consultant again and explain how your feeling and that you would like more information and you’ve got questions. Maybe speak to your husband and get him to explain why he’s so adamant he doesn’t want a POA in place? This is all so fresh at the moment I’m sure as time goes on and he excepts the diagnoses he may change his mind. I must admit myself and my husband still haven’t even got a will in place it’s one of those things you don’t like to think about isn’t it.
 

Cazcaz

Registered User
Apr 3, 2021
264
0
Sorry to hear of the diagnosis.

On a practical level, You need to be prepared as soon as possible. “Crossing that bridge” when you come to it is not a good idea as by then he may have lost capacity to make decisions and without the information and paperwork sorted it won’t be you making the decisions. It will be someone appointed from Social Services. If he loses capacity without any POAs in place, you lose decision making for him.

For example

without Finance POA you won’t be able to take care of his money, a complete stranger will do it. You can’t access his funds or have a say in how his money is spent.

without Health POA you will have no say where he lives (at home/care home), you won’t be able to have a say in his care or treatment or have any right to be kept informed about his condition beyond being his next of kin,

another consideration to be sorted out early is finances. If Social Services were to take over his care all money in his own name and half of any joint accounts will be taken to pay for his care. Given this, it’s a good idea to work out if he will be self funding (paying for his own care vs Social Services paying for him) and if so for how long. DO NOT start moving money around, if money is removed from any of his accounts now to “protect it”, then it will have to be repaid and will still be counted towards his care, this is called a Deprivation of Assets. Social Services have the right to delve into his past finances, going back as far as they wish.

But you need to start figuring out what happens if he needs full time care (in some this can take a decade, for others like our family it’s happened less than a year after diagnosis -hence why your drs said you might not have a year). Can you afford to live at home without his income or savings. You will have your own income, your savings and half your joint account to live on. Being prepared for this is a good idea.

Lastly who owns your property/who pays the mortgage.

Sorray to sound so ‘matter of fact’ but believe me, being prepared is the only way forward.
 

Raest

Registered User
Jan 15, 2022
13
0
Hi, thank you for your reply. Your reply is also helpful because you have explained ‘he may’ loose his capacity so I have a time frame. I guess its the not knowing part but then I think well he may have another 10 years like this. He is adamant he does not want a POA at any costs. I have even said I will get one too but he refuses point blank. Also do you think it is possible to drs to tell me what stage he is at? He if fully capeable and just forgets words sometimes. There was 2 times where he left the home to go get shopping but ended up somewhere else.
 

Raest

Registered User
Jan 15, 2022
13
0
My husband was diagnosed in January this year at 57 although we were told he probably had it in October. It was a total shock and everything i needed to sort out was overwhelming. I had to go on medication as I found it difficult to cope. What helped me was speaking to an independent financial advisor who was recommended to us. They sorted out POA for hubby and me as well and amended our wills at no cost to us. They then advised us what to do financially if we may have to look at care homes.
 

Sam50

Registered User
Apr 1, 2021
10
0
51
South West
Hi, I read your message and want to. Help as I am have young onset alzheimers. 51 now but it start maybe 5 yer ago. Diagnosed 2 ye ago. I am about same so far and am living well. POA in place. This is not just for us with dementia, but for all. My advice- take all the offers of help re dementia. Admiral Nurses are wonderful. Start with them. Take care. S
 

MaNaAk

Registered User
Jun 19, 2016
7,541
0
Essex
Dear @ocean drop,

I'm sorry to hear about your and I support what the others have said but like to add a few suggestions of my own. Dad was diagnosed in 2016 with Alzheimers although I noticed the symptoms a year before and he noticed them even earlier. We were both present at the diagnosis and all I could think of was him when we heard it. We were told six months but he was prescribed donepezil 5 mg and at first we were both depressed. However he took his medicine and at first it made him feel dizzy as he was taking it at dinner time instead of bedtime.

Sometime after taking donepezil he actually appeared to be better and was virtually back to his normal. Without donepezil he probably would have had six months but with donepezil he had four years! He was in his late seventies at diagnosis and had other problems and finally had a stroke. Anyway whilst your husband is still capable you need to get things in motion. You can do both POAs online I would start to fill these in possibly dealing with the finance one first of all and tell your husband that this will allow you to look after his money. Infact you could also do one for yourself as this may encourage him. You can start to have a look at benefits but you're going to have to get him to take that medicine and you will need to tell love lies. Does he take any other medication? Could he take these at bedtime to get him used to donepezil?

Could he take it with a snack as this is what dad used to do? In the months since diagnosis dad and I made beautiful memories with lunches and dinners out.
He even enjoyed lunch at the hospital and he felt better with the medication at first.

Hugs


MaNaAk