Husband just recently diagnosed with Early Onset Alzheimers

[maggie57may]

Hi,

My husband has just recently been diagnosed with early onset alzheimers. I feel that we have got over the shock of the diagnosis, but find it difficult some days to accept that this is acrually what is happening. It is hard when everyone around you thinks that it is not true and that they have got it wrong as most of the time my husband appears to them to be no different to how he was previously,(they only see him for the odd hour or so) so this actually makes me doubt it too on some days. Although other days I can see it and believe it is correct.
I lost my dad last year to this terrible disease and had many years of seeing him deteriorate and I am scared of seeing my husband go the same way, some times I think ignorance is bliss, but knowing what may lie ahead does give me some down days but I try to keep my/our spirits up as he gets agitated if I am not positive about things.

Has anyone else experienced the denial of family and friends upon receiving the diagnosis? and in the early stages feel the way we do that they are wrong?

 

[Shedrech]

Hi maggie57may
welcome to TP - I hope you have a chance to mooch around as you'll discover lots of information and much understanding here
dad wasn't early onset, which may bring out these types of responses more often, simply because many people don't appreciate that dementia doesn't only exist in our elders, but there were those who encountered him early on and just didn't know him well enough or visit for long enough to really grasp the changes in him; and some close family members, I think, just didn't want to acknowledge that the man they knew and loved did have dementia, one made it tricky at times to do what was best for dad
I tended to take the path of least resistance, letting them cope in their way but not actually taking much heed of them, while I concentrated on dad - most eventually came to accept, but that meant we hardly ever saw them
I hope you have some in your life who do accept what you say and will support you, keep those close and let the others be
My condolences on the loss of your dad, which I appreciate puts you in a position knowing how someone living with dementia can be affected - your husband is himself, though, and his path may be different - easy for me to say, but, make the most of your time together
and do keep posting
best wishes to you both

 

[chick1962]

Hi,

My husband has just recently been diagnosed with early onset alzheimers. I feel that we have got over the shock of the diagnosis, but find it difficult some days to accept that this is acrually what is happening. It is hard when everyone around you thinks that it is not true and that they have got it wrong as most of the time my husband appears to them to be no different to how he was previously,(they only see him for the odd hour or so) so this actually makes me doubt it too on some days. Although other days I can see it and believe it is correct.
I lost my dad last year to this terrible disease and had many years of seeing him deteriorate and I am scared of seeing my husband go the same way, some times I think ignorance is bliss, but knowing what may lie ahead does give me some down days but I try to keep my/our spirits up as he gets agitated if I am not positive about things.

Has anyone else experienced the denial of family and friends upon receiving the diagnosis? and in the early stages feel the way we do that they are wrong?

Hello Maggie it still happens to us too and we are in our 6th year of Alzheimer's and mixed dementia which my hubs got. The only advise I can really give is to take it one day at the time as there's so much lovely days still ahead . My husband does get frustrated at times which I fully understand as he is so aware of his illness. I tend to ignore ppl or friends who say my husband is alright and there's nothing wrong as they don't tend to know the illness really . It is a shock once diagnosed but I don't look to much in the future . We put our affairs in order for later and enjoy each day. Big hugs to you xxxx


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[Pb46]

Hi,

My husband has just recently been diagnosed with early onset alzheimers. I feel that we have got over the shock of the diagnosis, but find it difficult some days to accept that this is acrually what is happening. It is hard when everyone around you thinks that it is not true and that they have got it wrong as most of the time my husband appears to them to be no different to how he was previously,(they only see him for the odd hour or so) so this actually makes me doubt it too on some days. Although other days I can see it and believe it is correct.
I lost my dad last year to this terrible disease and had many years of seeing him deteriorate and I am scared of seeing my husband go the same way, some times I think ignorance is bliss, but knowing what may lie ahead does give me some down days but I try to keep my/our spirits up as he gets agitated if I am not positive about things.

Has anyone else experienced the denial of family and friends upon receiving the diagnosis? and in the early stages feel the way we do that they are wrong?

Hi Maggie, my husband was diagnosed with early onset dementia last month, he's only 50. I've known it was dementia since September but everyone I talked to tried to convince me I was wrong, that surely it wasn't, it was stress, depression etc. nobody would really believe me. Some times he was so normal (his normal self) that I thought at times it was me that was going mad. I was positive by November it was dementia and then it took me 2 months to pluck up the courage to take him to GP. ( I wanted a little more time of pretend normality). The GP and memory clinic where equally concerned and diagnosis was rapid. My husband is oblivious to the the diagnosis, well he know something's wrong but can't remember the name of it. To be honest I'm really scared. I know what you mean about friends and family, they get a brief glance of what they are like and think things seem ok, that they seem little different.
Hopefully this forum is going to be great support for us( and I think that it will),
Keep posting xxxx

 

[Alison N]

Hi Maggie, my husband was also diagnosed with young onset Alzheimer's 18 months ago at the age of 51. Everyone said he seemed the same as he always had but like you they only saw him for an hour or so, so couldn't really see what was really happening. Sometimes he seemed OK and this is what they saw. I now just ignore what they say as they don't live with him 24/7. As time has passed they can now see the deterioration in him. Just take it a day at a time and enjoy the time you have together. There is always someone on here to give out really good advice so keep popping in.

 

[maggie57may]

I just want to say a big thank you to you all for all the responses. I felt quite emotional reading them as it made me realise that there are a lot of kind and understanding people out there that are going through the same or similar experiences, I am so glad that I joined the forum and I am sure that we can all give each other support as things progress.
It must have been really hard to be told that diagnosis at your husbands younger ages. I have found it has brought us closer together, perhaps because life was getting difficult and we didn't know why, and now there is a reason for it and we can appreciate what we do have. I appreciate where you are coming from in regards to not wanting to know just to keep a pretend normal life.
I am scared of the future (as much as my poor husband is) but like you say I really do need to learn to take each day as it comes, which is hard for me as I am a plan ahead type of person, but I am going to try my best.
Thanks again, I don't feel as lonely now and I look forward to keeping in touch and hearing how everyone is doing from time to time

 

[chick1962]

I just want to say a big thank you to you all for all the responses. I felt quite emotional reading them as it made me realise that there are a lot of kind and understanding people out there that are going through the same or similar experiences, I am so glad that I joined the forum and I am sure that we can all give each other support as things progress.
It must have been really hard to be told that diagnosis at your husbands younger ages. I have found it has brought us closer together, perhaps because life was getting difficult and we didn't know why, and now there is a reason for it and we can appreciate what we do have. I appreciate where you are coming from in regards to not wanting to know just to keep a pretend normal life.
I am scared of the future (as much as my poor husband is) but like you say I really do need to learn to take each day as it comes, which is hard for me as I am a plan ahead type of person, but I am going to try my best.
Thanks again, I don't feel as lonely now and I look forward to keeping in touch and hearing how everyone is doing from time to time

Plz let us know how you are getting on . My husband was 60 when diagnosed by the way and he is holding up still pretty well xx


Sent from my iPhone using Talking Point

 

[Jean1234]

Hi Maggie
My husband was officially diagnosed last year but I saw the signs many years previously. His mother and elder sister had the disease previously so I knew the signs and know what to expect although as they will tell you on TP no two cases travel the same route. You will find TP a great help and comfort on the difficult days and full of advise and assistance. Welcome to the TP family.

 

[1mindy]

My OH was diagnosed in 2012 and had shown signs years before. Only this Decemer did some friends begin to see the signs. I told my neighbours today that he has now gone into full time care they queried it as he had been having a nice chat to them a couple of weeks ago . No one knows the half of what goes on behind closed door because we put on an it's all OK face for our oh sake and maybe sel f preservation. So you two just do what is right for you and blow the rest. I still haven't told any of our " friends" as they haven't called us to see how we are for weeks some of them months.

 

[Scarlett123]

Hi,

My husband has just recently been diagnosed with early onset alzheimers. I feel that we have got over the shock of the diagnosis, but find it difficult some days to accept that this is acrually what is happening. It is hard when everyone around you thinks that it is not true and that they have got it wrong as most of the time my husband appears to them to be no different to how he was previously,(they only see him for the odd hour or so) so this actually makes me doubt it too on some days. Although other days I can see it and believe it is correct.
I lost my dad last year to this terrible disease and had many years of seeing him deteriorate and I am scared of seeing my husband go the same way, some times I think ignorance is bliss, but knowing what may lie ahead does give me some down days but I try to keep my/our spirits up as he gets agitated if I am not positive about things.

Has anyone else experienced the denial of family and friends upon receiving the diagnosis? and in the early stages feel the way we do that they are wrong?

Hi, and a warm welcome to Talking Point from me. Having experienced AD so recently, with your Dad, is especially hard for you, and though you saw the path your Dad's illness took, it may not be the same path for your husband.

There's no hard and fast rule for how long each stage lasts, and during my husband's 12 year battle, we had some good years in the middle, where things plateaued and we were able to create some lovely memories. You'll get loads of help from others on here, and if ever you want to offload, there's always someone awake.

 

[maggie57may]

Bad week !!!

Hi, Well it has been a bad week this week, quite a few tears (not in front of my OH though). Been to memory clinic with my OH, he always gets anxious when he is due to go there as he does not want to hear anything negative. Luckily the visit went well and he has been told his care can be transferred to his doctor now that she was happy that the tablets have not been causing any side effects. But the next day my OH seemed to have a melt down and was ranting about the way he is just before I went to work. I work full time and hate going of to work when he is upset like that, so I have decided to start by cutting down one day a week (but make up some hours by going in early on the other 4 days to make up for the loss of money) I am waiting for work to agree to this. I am so tired as working full time and my OH wanting to get out on a weekends. I am torn between what my OH thinks of me being selfish (which he has stated) worrying about our finances when I should be concerntrating on making him happy, while we can. i know I should live for each day but it is so hard when I have always sorted out our finances and been a plan ahead type of person, and am scared of how things will be further down the line.
I am not sure what stage my OH is at, does anyone know how to tell the stages?

Thanks for taking time to read this and any support you may have.

 

[Luanne]

My Husband has early onset,

Hello I have just joined this forum as my 50 year old, strong and gallant handsome husband has just recently been diagnosed with early onset dementia and bipolar. And he seems to be getting worse weekly. He is still at work but I don't think for much longer as he is forgetting everyday tasks and timings of things.I work from home ( I have 2 lodgers and 2 rooms I let out to guests on holiday) But we do not own our home and do not have any money put by. I don't know what we will do once he stops working. We have no assets and savings ( which we should have in our 50s)because,due to the fact that my husband was so careless with business /money over the years ( many failed ventures)which I know now is due to Bipolar. He has recently been prescribed drugs to help with that. But it is the dementia that he is finding difficult to except and I know he is scared and worried.I am so scared and worried for our future too, but I try to be positive in front of him. Friends and family I feel are not really believing the diagnosis, but I know he has not been the man I married for some time now. I also have my Dad living with us who is 81yrs and has bladder cancer and his wife ( not my mother) in my opinion has an undiagnosed personality disorder, she is dreadful. So I am feeling sorry for myself today as I have a lot on my plate, just trying to bring in the money to pay the rent etc.And to top off my self pity I have not had much sex over the last decade, we use to have so much good sex, I really miss it! I am not into DIY of any sort, what can I do, I think I am sexually frustrated, but my darling handsome man can't manage much I love him dearly and am still very much attracted to him and he is me ( at times) but it is momentarily.So please how do any of you cope with the loneliness and lack of romance/sex? Sorry to be personal.

 

[Nameless]

Hello Luanne,

I'm sorry to hear about your situation and it sounds like you have a lot to cope with. There are a lot of nice people here, who know what you are going through. You might want to check out the thread "intimacy".

Take care

 

[maggie57may]

Hi Luanne

Hello I have just joined this forum as my 50 year old, strong and gallant handsome husband has just recently been diagnosed with early onset dementia and bipolar. And he seems to be getting worse weekly. He is still at work but I don't think for much longer as he is forgetting everyday tasks and timings of things.I work from home ( I have 2 lodgers and 2 rooms I let out to guests on holiday) But we do not own our home and do not have any money put by. I don't know what we will do once he stops working. We have no assets and savings ( which we should have in our 50s)because,due to the fact that my husband was so careless with business /money over the years ( many failed ventures)which I know now is due to Bipolar. He has recently been prescribed drugs to help with that. But it is the dementia that he is finding difficult to except and I know he is scared and worried.I am so scared and worried for our future too, but I try to be positive in front of him. Friends and family I feel are not really believing the diagnosis, but I know he has not been the man I married for some time now. I also have my Dad living with us who is 81yrs and has bladder cancer and his wife ( not my mother) in my opinion has an undiagnosed personality disorder, she is dreadful. So I am feeling sorry for myself today as I have a lot on my plate, just trying to bring in the money to pay the rent etc.And to top off my self pity I have not had much sex over the last decade, we use to have so much good sex, I really miss it! I am not into DIY of any sort, what can I do, I think I am sexually frustrated, but my darling handsome man can't manage much I love him dearly and am still very much attracted to him and he is me ( at times) but it is momentarily.So please how do any of you cope with the loneliness and lack of romance/sex? Sorry to be personal.

I am really sorry to hear about your husband, my heart goes out to you. What a shame when it affects people so young and with bipolar too, life can be so unfair. I guess it was a little easier for me because my OH had already retired early, so finances have not really changed much, although I do try to keep him under control for spending as he has a why not attitude and really doesn't care how it will effect me at the end (some of which I can understand, as he is scared and wants to just do what he wants) Wow how on earth do you cope with lodgers and guests, your dad and partner, you must be a saint is all I can say, as it takes all my strength to cope with just working full time and my OH. It is ok to have days feeling sorry for yourself, I do to and I am sure many others on this forum would agree, some days I just want to scream, shout or cry but I just try to hold it together. No one actually understands and I have no one to really talk to face to face. Our sex life has never really been great (although he has different view point to that lol) I used to do DIY and it does help, you should really give it a go it just releases some of the tension. I can't be bothered with any of it any more and it does make me sad to think is this it for me.....my OH seems overly affectionate recently (if you know what I mean)he says its because we seem to be getting on better, but sadly I have no feelings in that department, which frustrates him, how do you tell someone after 40 years that you just don't fancy them any more, you can't especially not now. This may make me sound like a cold, heartless cow but truly I am not, I just always seem too stressed to feel sexy, so give it a go any way, it may help. I have not used this forum as much as I should, but perhaps it does help to get things off your chest at the least. Keep strong and stay in touch

 

[maggie57may]

Hi, So it has been quite a while since I have written on this forum , although I have visited it from time to time. It has certainly been a rollercoaster of a ride. Sadly now though my husband has finally accepted that he has this disease (as previously he wanted to be in denial, as everyone was telling him he didn't have it) He realises he is getting much more forgetful, he has quite a few mood swings (occasional aggression, not physically) and things in general have gone down hill. I don't seem to be coping very well with the changes and I feel so guilty when I respond to something he does or doesn't do in a negative way (usually just an instant reaction) I try to take each day as it comes and some times get irritable and sad. He sighs so much from the moment he wakes until he goes to bed, he won't wear his hearing aids which I keep trying to assure him would make a big difference to us both, but he just doesn't want to know. I am worried I am getting to the stage of not wanting to go out and about with him, as it is like having mixture between an old man and a child. This can be so exhausting, and I still work four days a week which doesn't help. I know it isn't going to get any easier, I just need to get over feeling as if I am not being supportive enough. Thank you, it has helped getting it off my chest and hopefully the positivity will soon be back and we can deal with every day together.

 

[Sad Staffs]

Hi, So it has been quite a while since I have written on this forum , although I have visited it from time to time. It has certainly been a rollercoaster of a ride. Sadly now though my husband has finally accepted that he has this disease (as previously he wanted to be in denial, as everyone was telling him he didn't have it) He realises he is getting much more forgetful, he has quite a few mood swings (occasional aggression, not physically) and things in general have gone down hill. I don't seem to be coping very well with the changes and I feel so guilty when I respond to something he does or doesn't do in a negative way (usually just an instant reaction) I try to take each day as it comes and some times get irritable and sad. He sighs so much from the moment he wakes until he goes to bed, he won't wear his hearing aids which I keep trying to assure him would make a big difference to us both, but he just doesn't want to know. I am worried I am getting to the stage of not wanting to go out and about with him, as it is like having mixture between an old man and a child. This can be so exhausting, and I still work four days a week which doesn't help. I know it isn't going to get any easier, I just need to get over feeling as if I am not being supportive enough. Thank you, it has helped getting it off my chest and hopefully the positivity will soon be back and we can deal with every day together.

I just read your first post and thought I had written it.
I’ve now read your update and I want to say how hard it must be having to work and care for your husband. But the good thing is that you do have some normality with your work life and hold on to that for as long as you can. It’s very precious.
I can’t leave my husband for more than 2 or 3 hours, and that is a worry. He gets very anxious if I do go out on my own, which if I am lucky is once a fortnight. Probably not that often!
And yes, you are right, it is a mixture of having a fully grown child. I said earlier that at least I could send my child to their bedroom!
But for all our trials and tribulations I love my husband so very much, I don’t always like how he is especially when he gets so aggressive, but I still have him and we have our memories of a lovely 44 years together. My cousin has recently lost her husband and she is devastated. For all our problems I am better off than she is.... I still have my husband every day, warts and all!!
Take care and thinking of you. Bx

 

[maggie57may]

I just read your first post and thought I had written it.
I’ve now read your update and I want to say how hard it must be having to work and care for your husband. But the good thing is that you do have some normality with your work life and hold on to that for as long as you can. It’s very precious.
I can’t leave my husband for more than 2 or 3 hours, and that is a worry. He gets very anxious if I do go out on my own, which if I am lucky is once a fortnight. Probably not that often!
And yes, you are right, it is a mixture of having a fully grown child. I said earlier that at least I could send my child to their bedroom!
But for all our trials and tribulations I love my husband so very much, I don’t always like how he is especially when he gets so aggressive, but I still have him and we have our memories of a lovely 44 years together. My cousin has recently lost her husband and she is devastated. For all our problems I am better off than she is.... I still have my husband every day, warts and all!!
Take care and thinking of you. Bx

Hi Sad Staffs.
Of course you are right, when I am at home with my husband I wish I was at work, (as you said for normality) and when I am work (as I don't enjoy my job) I wish I was at home with my husband. There is no pleasing me, I think some days I am as confused as he is.....I am lucky that I am still able to leave him for longer periods of time, although I have cancelled a 3 day trip away with some girlfriends in October, as husband had a bit of a melt down recently and it scared me and I realised there is no way I could go and leave him for so long(I think when I booked it I was being optimistic at the time and things didn't seem so bad) My husband does get very anxious about everything.
I do love him but I really don't like myself some days when I feel I hate him (it is a strong word to use and I don't mean it to be) I am trying to make memories for us both but constantly feel exhausted, I know there are people out there going through so much worse stages and I admire how they have managed to get through it all and I hope that I can be as strong as they are. I realise that we are both just sad and scared of the situation, but have to just deal with it.
Stay strong and keep in touch on here for support, you have given me the strength to re-evaluate what is important, thank you.

 

[Sad Staffs]

I really feel as if I am the only person going through this trauma. It is a surprise to read someone’s post, like the first post of yours, that stops me in my tracks as I realise that I’m not alone. I think if I could leave my husband for a morning or afternoon then going to a Carers group might be helpful. Although I’ve never been very good at such things. But as my husband is incontinent and can’t manage to put on or take off his pads I have to be there for him. I am ashamed to say that I do sometimes get irritated, but if I leave him too long then I have to clear up the consequences.
I think if you can manage it then you should take the opportunity of your break away. You might not get the chance in the future, so if there is any way then I think you should try to go with your friends and charge your batteries. Don’t feel guilty. We all do so much more than we ever dreamed we would have to.
Most of my husbands problems have been caused by treatment for his bladder cancer, 7 years ago, and he has been having treatment ever since with many general anaesthetics. We now know that anaesthetics have made his dementia worse. He goes back in hospital this week for a change of his kidney stents, and of course a GA. We have spoken to the anaesthetist and she has said that we can expect some impact.
It’s a terrifying time, and I have no idea how he will be post surgery. Just got to wait and see.
It has been good talking to you. Take care of yourself. Bx

 

[maggie57may]

I really feel as if I am the only person going through this trauma. It is a surprise to read someone’s post, like the first post of yours, that stops me in my tracks as I realise that I’m not alone. I think if I could leave my husband for a morning or afternoon then going to a Carers group might be helpful. Although I’ve never been very good at such things. But as my husband is incontinent and can’t manage to put on or take off his pads I have to be there for him. I am ashamed to say that I do sometimes get irritated, but if I leave him too long then I have to clear up the consequences.
I think if you can manage it then you should take the opportunity of your break away. You might not get the chance in the future, so if there is any way then I think you should try to go with your friends and charge your batteries. Don’t feel guilty. We all do so much more than we ever dreamed we would have to.
Most of my husbands problems have been caused by treatment for his bladder cancer, 7 years ago, and he has been having treatment ever since with many general anaesthetics. We now know that anaesthetics have made his dementia worse. He goes back in hospital this week for a change of his kidney stents, and of course a GA. We have spoken to the anaesthetist and she has said that we can expect some impact.
It’s a terrifying time, and I have no idea how he will be post surgery. Just got to wait and see.
It has been good talking to you. Take care of yourself. Bx

You are most definitely not alone, this site certainly makes that clear ( but it doesn't stop that feeling of isolation) I guess I am lucky in that respect as when he got diagnosed I joined a meetup group with lots of nice ladies in our area, so have been out for meals etc (I wasn't great at that sort of thing and still have to push myself to go) but as you say I need to do these things while I still can, that was one of the reasons I agreed in the first place to the 3 day break, not sure if I have done the right thing cancelling it, but I don't think I would have relaxed and enjoyed it. You should be proud of how you are coping with the incontinence, my husband has just starting wearing pads when we go out for long journeys or visits, but I think this is because he leaves it until the last minute, forgetting to go, then it gets urgent, at least it is just the odd dribble at the moment, not sure \I could cope like you do.
I know what you mean about GA as my husband had a hip replacement in April and they talked him out of having GA, stating it could/would make things worse. Poor you, no wonder you are terrified. Have you got any family/friends for support?
I hope things don't go as bad as you fear. Let me know how it goes?

 

[swood]

Hi, So it has been quite a while since I have written on this forum , although I have visited it from time to time. It has certainly been a rollercoaster of a ride. Sadly now though my husband has finally accepted that he has this disease (as previously he wanted to be in denial, as everyone was telling him he didn't have it) He realises he is getting much more forgetful, he has quite a few mood swings (occasional aggression, not physically) and things in general have gone down hill. I don't seem to be coping very well with the changes and I feel so guilty when I respond to something he does or doesn't do in a negative way (usually just an instant reaction) I try to take each day as it comes and some times get irritable and sad. He sighs so much from the moment he wakes until he goes to bed, he won't wear his hearing aids which I keep trying to assure him would make a big difference to us both, but he just doesn't want to know. I am worried I am getting to the stage of not wanting to go out and about with him, as it is like having mixture between an old man and a child. This can be so exhausting, and I still work four days a week which doesn't help. I know it isn't going to get any easier, I just need to get over feeling as if I am not being supportive enough. Thank you, it has helped getting it off my chest and hopefully the positivity will soon be back and we can deal with every day together.