I still can’t accept

No27

New member
Aug 19, 2018
2
0
My husband was diagnosed(4 years ago) with Early onset Alzheimer’s at the age of 57 never been ill with anything before. Needless to say this was a complete shock to both of us. My problem is that I can’t deal with what’s happening and seem to spend my life feeling like rubbish. On the other hand my husband has always been a very gentle layed back person so his attitude was/is to shrug his shoulders and.carry on in his own world.
I don’t know how to deal with the constant changes and get very hurt, there is no support or feed back from him for anything. Then we have a “good day” at it’s wonderful (I make the most of them) these are getting less and I go back to square “one” each time.
My question is does the pain go away? Apart from taking one day at a time what should I do? I have this feeling that I’m drowning with the odd breath to keep going. I have read many books and looked at many YouTube messages even been on a course, I just don’t seem to be able to accept/believe what’s happening to us like most people we have had our share of issues to deal with never been a problem before.
Sorry for rambling on Just woundered if anyone else feels the same.
Thank you for listening.
 

Cat27

Registered User
Feb 27, 2015
13,057
0
Merseyside
Welcome to TP @No27
I cared for my Dad & his diagnosis & behaviour took away my rock.
I never really came to terms with it all.

Please keep posting here as you’ll get lots of support.
 

Philbo

Registered User
Feb 28, 2017
853
0
Kent
My wife's dementia (FTD) has severely impacted her cognitive abilities, her speech and more recently, started to affect her mobility.

We are "only" 67 and she was diagnosed 4.5 years ago and it has been hard to watch this lovely, independent woman disappearing into her own happy (thankfully) little world. At the same time, I have had to man-up and take over all the things she used to do for the both of us and herself.

I don't begrudge this (for better of for worse - and all that) but I find it very hard (and lonely) and often feel like a hamster on its wheel.

What keeps me reasonably sane, is socialising, especially at weekends, when we go to our local pub. We've been fortunate to make some great friends (all since I first realised we were headed for a diagnosis), who are really good with Lyn and it takes some of the pressure off me and gives me the opportunity to interact with others.

The "pain" certainly doesn't go away (especially as new issues crop up) but I found initially, when it was all still so raw, that going to local dementia support coffee mornings and talking to other carers helped lift that feeling of isolation.

You will certainly get a lot of support and useful advice from the lovely people on this forum too.

Best wishes
Phil
 

karaokePete

Registered User
Jul 23, 2017
6,534
0
N Ireland
Hello @No27, welcome to TP. I hope you will find the forum a friendly, informative and supportive place.

My wife is also early onset and we felt the same as you after diagnosis. It’s called anticipatory grief. I was able to get through it quickly by getting active with setting our affairs in order - things like Wills, POA etc.

If you can’t get through the grief response do talk to your GP as something like Counselling can help and a lot of members have found that useful. You can read up on things like the grief response and POA in the AS Factsheets and they can be found with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

You can search for support in your area with this link https://www.alzheimers.org.uk/find-support-near-you

Lastly, there Is also a help line for expert advice, details as follows
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,112
0
south-east London
Hi @No27 and welcome to Talking Point.

I understand much of what you are going through in as far as my husband was also diagnosed with early onset dementia. In his case he was 58. Like your husband, he was very calm about the whole diagnosis, he accepted it from the start and had a sort of 'what will be will be' approach.

Like you, I was floundering at the start - mainly because I had no information to work with following the diagnosis.

That is where TP kicked in for me. I made it my goal to read up on everyone's experiences as much as I could. It was hard going at times, and along the way I had to take breaks from the forum for a few weeks here and there because it could be so overwhelming. I also learnt that not everyone will experience the same things or to the same degree as others, so being prepared was one thing but I knew nothing was inevitable

I never told my husband about the things I learnt here, nor did I speak about what might or might not happen, he remained calm and after a time, the more I read and learnt, I actually became more calm in myself because I was gathering together knowledge - and that can be a powerful thing.

With knowledge there was less chance of being caught off guard by changes as they occurred. Nine times out of 10 I had already taken precautions ahead of time like making sure the POAs were in place while he had capacity; changing to suitable floor coverings; getting rid of clutter; removing rugs; installing handrails; installing a shower with a lockable temperature control; adding a tag to his key ring with my contact number; having a supply of incontinence products; immediately recognising the signs of his first UTI - and numerous other measures besides.

This was a huge help because as things gradually became needed I was not running around in a panic trying to play catch up . As each change came - eg the first time he got lost, the first time he developed spatial awareness and mobility issues, and the first time he couldn't get to the loo in time - everything was in place and the atmosphere remained calm.

Of course it hurt to see each change in him but there were always people here to listen and support, so none of us have to go through this alone.

Acceptance does come, if only in as far as we realise that we cannot change the diagnosis - we can only do our best to make the various stages as smooth as possible and make every good moment count.

I believe that my husband 's own quiet acceptance of his diagnosis is what gave me strength to face the uncertain future. It would have been so much harder to deal with had he been angry or in denial and I have read many heart-breaking accounts where that has been the case for other members on here.

Please keep posting and know that we are all here for you.
 

kindred

Registered User
Apr 8, 2018
2,937
0
My husband was diagnosed(4 years ago) with Early onset Alzheimer’s at the age of 57 never been ill with anything before. Needless to say this was a complete shock to both of us. My problem is that I can’t deal with what’s happening and seem to spend my life feeling like rubbish. On the other hand my husband has always been a very gentle layed back person so his attitude was/is to shrug his shoulders and.carry on in his own world.
I don’t know how to deal with the constant changes and get very hurt, there is no support or feed back from him for anything. Then we have a “good day” at it’s wonderful (I make the most of them) these are getting less and I go back to square “one” each time.
My question is does the pain go away? Apart from taking one day at a time what should I do? I have this feeling that I’m drowning with the odd breath to keep going. I have read many books and looked at many YouTube messages even been on a course, I just don’t seem to be able to accept/believe what’s happening to us like most people we have had our share of issues to deal with never been a problem before.
Sorry for rambling on Just woundered if anyone else feels the same.
Thank you for listening.
Welcome sweetheart and it's so lovely to hear that you have these good days as well as difficult ones. I found that as well as losing abilities, my husband could be far more appreciative and loving than he had been for years and I always wrote down what he said. Some of the stuff quite stunning. This was longish time ago, I was sole carer for him for 5 years and it did get hard, but at the end of each day now he is in nursing home, I sit on the stairs and read some of the wonderful things he said and it's evident that I did all I could and he knew it. This helps me tremendously and you have a chance to do this if you wanted to. All thoughts, sweetheart. Kindred.xx
 

AliceA

Registered User
May 27, 2016
2,911
0
My husband was diagnosed(4 years ago) with Early onset Alzheimer’s at the age of 57 never been ill with anything before. Needless to say this was a complete shock to both of us. My problem is that I can’t deal with what’s happening and seem to spend my life feeling like rubbish. On the other hand my husband has always been a very gentle layed back person so his attitude was/is to shrug his shoulders and.carry on in his own world.
I don’t know how to deal with the constant changes and get very hurt, there is no support or feed back from him for anything. Then we have a “good day” at it’s wonderful (I make the most of them) these are getting less and I go back to square “one” each time.
My question is does the pain go away? Apart from taking one day at a time what should I do? I have this feeling that I’m drowning with the odd breath to keep going. I have read many books and looked at many YouTube messages even been on a course, I just don’t seem to be able to accept/believe what’s happening to us like most people we have had our share of issues to deal with never been a problem before.
Sorry for rambling on Just woundered if anyone else feels the same.
Thank you for listening.
It came to us later, very slowly though. We made natural excuses for a while. Like with many couples I just I filled and covered up. Accepting the present situation for what it is does help, then something happens and it seems back to square one. Head knowledge does not stop the heart hurting. Treasure the good days, I find good days happen sometimes out of the blue but also on calm consistent days too. Take care of yourself, in all ways. This self care helps us both. X
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Hello, @27, I don’t think the pain does go away, but you do get used to living with it. Talking Point was, and is, my lifeline. Being able to communicate with others who understand is invaluable. Sometimes you feel isolated, in a house with someone who is living in their own world, and you can come online and ‘ chat’ to someone. When major milestones come, continence issues, wandering, care home...there is someone here who has gone on before and who can help and support.
One piece of advice I was given, that I took, was to get my husband involved in day care of some sort at an early stage, so that when we really needed it, he would be used to it. I introduced it as a ‘club’ and it really did help. We used a Cogs Club (cognitive support), I know some people have used ‘men in sheds’. You can do a search in your area and see what is available.
https://www.alzheimers.org.uk/
The other advice I was given, was to build a life for myself. I’ve not been quite so successful there! But I am a member of WI which I love, and has been such a good place to make friends and have someone to do things with. But a wise person told me, it is easy to find someone to do something with, but nearly impossible to find someone to do nothing with. And there’s the rub.
Sometimes I found Talking Point hard to read in the early days, as it was scary to see what the future might be, but it really is different for everyone. Enjoy those good days...they can go on for a long time. My husband is in a care home, but we still take holidays, go out to restaurants, have family meals. It’s getting harder, but while I can still manage, and he still enjoys, we will carry on.
 

Canadian Joanne

Registered User
Apr 8, 2005
17,710
0
70
Toronto, Canada
It is very difficult when someone is diagnosed while still fairly young. My mother was diagnosed one month after her 64th birthday.

I don't know if I ever accepted it, but I think I learned to simply endure.
 

No27

New member
Aug 19, 2018
2
0
Hi @No27 and welcome to Talking Point.

I understand much of what you are going through in as far as my husband was also diagnosed with early onset dementia. In his case he was 58. Like your husband, he was very calm about the whole diagnosis, he accepted it from the start and had a sort of 'what will be will be' approach.

Like you, I was floundering at the start - mainly because I had no information to work with following the diagnosis.

That is where TP kicked in for me. I made it my goal to read up on everyone's experiences as much as I could. It was hard going at times, and along the way I had to take breaks from the forum for a few weeks here and there because it could be so overwhelming. I also learnt that not everyone will experience the same things or to the same degree as others, so being prepared was one thing but I knew nothing was inevitable

I never told my husband about the things I learnt here, nor did I speak about what might or might not happen, he remained calm and after a time, the more I read and learnt, I actually became more calm in myself because I was gathering together knowledge - and that can be a powerful thing.

With knowledge there was less chance of being caught off guard by changes as they occurred. Nine times out of 10 I had already taken precautions ahead of time like making sure the POAs were in place while he had capacity; changing to suitable floor coverings; getting rid of clutter; removing rugs; installing handrails; installing a shower with a lockable temperature control; adding a tag to his key ring with my contact number; having a supply of incontinence products; immediately recognising the signs of his first UTI - and numerous other measures besides.

This was a huge help because as things gradually became needed I was not running around in a panic trying to play catch up . As each change came - eg the first time he got lost, the first time he developed spatial awareness and mobility issues, and the first time he couldn't get to the loo in time - everything was in place and the atmosphere remained calm.

Of course it hurt to see each change in him but there were always people here to listen and support, so none of us have to go through this alone.

Acceptance does come, if only in as far as we realise that we cannot change the diagnosis - we can only do our best to make the various stages as smooth as possible and make every good moment count.

I believe that my husband 's own quiet acceptance of his diagnosis is what gave me strength to face the uncertain future. It would have been so much harder to deal with had he been angry or in denial and I have read many heart-breaking accounts where that has been the case for other members on here.

Please keep posting and know that we are all here for you.
 

AliceA

Registered User
May 27, 2016
2,911
0
Hi @No27 and welcome to Talking Point.

I understand much of what you are going through in as far as my husband was also diagnosed with early onset dementia. In his case he was 58. Like your husband, he was very calm about the whole diagnosis, he accepted it from the start and had a sort of 'what will be will be' approach.

Like you, I was floundering at the start - mainly because I had no information to work with following the diagnosis.

That is where TP kicked in for me. I made it my goal to read up on everyone's experiences as much as I could. It was hard going at times, and along the way I had to take breaks from the forum for a few weeks here and there because it could be so overwhelming. I also learnt that not everyone will experience the same things or to the same degree as others, so being prepared was one thing but I knew nothing was inevitable

I never told my husband about the things I learnt here, nor did I speak about what might or might not happen, he remained calm and after a time, the more I read and learnt, I actually became more calm in myself because I was gathering together knowledge - and that can be a powerful thing.

With knowledge there was less chance of being caught off guard by changes as they occurred. Nine times out of 10 I had already taken precautions ahead of time like making sure the POAs were in place while he had capacity; changing to suitable floor coverings; getting rid of clutter; removing rugs; installing handrails; installing a shower with a lockable temperature control; adding a tag to his key ring with my contact number; having a supply of incontinence products; immediately recognising the signs of his first UTI - and numerous other measures besides.

This was a huge help because as things gradually became needed I was not running around in a panic trying to play catch up . As each change came - eg the first time he got lost, the first time he developed spatial awareness and mobility issues, and the first time he couldn't get to the loo in time - everything was in place and the atmosphere remained calm.

Of course it hurt to see each change in him but there were always people here to listen and support, so none of us have to go through this alone.

Acceptance does come, if only in as far as we realise that we cannot change the diagnosis - we can only do our best to make the various stages as smooth as possible and make every good moment count.

I believe that my husband 's own quiet acceptance of his diagnosis is what gave me strength to face the uncertain future. It would have been so much harder to deal with had he been angry or in denial and I have read many heart-breaking accounts where that has been the case for other members on here.

Please keep posting and know that we are all here for you.

Such sound advice, x
 

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