Hello. my name is pam and my husband of 52 has recently been diagnosed with alzheimers and i feel my life has ended. our future is bleak and i feel miserable most of the time. there are very few resources for people his age and everyone thinks i should take anti depressants which i wont. i would like to talk to someone in a similar case...if there is anyone out there my age ..50 ..caring for a partner...not a parent as the 2 are very different....i would love to hear from you. i know its early days and i will get used to the idea...but its just a bit too hard to accept at the moment. enough self pity....would love to hear from anyone my age thanks
hello
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Hello Pam,
There are many contributors to Talking Point (TP) who are caring for partners with early-onset Alzheimer's, although I'm not one of them.
Just thought I'd drop you a line to say welcome, and I'm sure you'll find a lot of practical help & emotional support here.
All the various types of dementia are represented here, and all stages within those types. There are many common symptoms and behaviours and also, as you say, significant differences. The one thing common to us all is a fierce determination to do the best we can to ensure our loved ones get the best care available.
Best wishes, and I expect you'll be hearing from others soon.
There are many contributors to Talking Point (TP) who are caring for partners with early-onset Alzheimer's, although I'm not one of them.
Just thought I'd drop you a line to say welcome, and I'm sure you'll find a lot of practical help & emotional support here.
All the various types of dementia are represented here, and all stages within those types. There are many common symptoms and behaviours and also, as you say, significant differences. The one thing common to us all is a fierce determination to do the best we can to ensure our loved ones get the best care available.
Best wishes, and I expect you'll be hearing from others soon.
Hiya Pam,
I also am not in your position; my mum started with dementia in her late 50's, and I have watched my parents cope with it.
Yes you have some very hard times ahead of you; even when you are happy part of you will always be grieving for your lost future, but you can still have some really good times as well. Dementia is a rollercoaster ride, both for sufferers and carers; the sufferer has no choice but to take the ride; we as carers can take the decision to get on or not. If anyone asked me to get on a rollercoaster I would be scared out of my mind, but my sons tell me of the fantastic thrills - my fear won't let me get on- so I don't get to experience the thrills. I have sat with my mum on her ride though, and learned how strong love is.
Sorry I'm waffling. Don't be afraid - you have a 'family' here now who will listen, and support you. We do not know your pain, but we have a better understanding of it than most.
Take care.
Love Amy
I also am not in your position; my mum started with dementia in her late 50's, and I have watched my parents cope with it.
I think that is partly the shock of the diagnosis. I know my dad used to say he couldn't cope, he didn't want to cope, so one day I gave him permission to go, and I would sort out mum's future. The thing was, he had to make the decision to accept and face the future.
Yes you have some very hard times ahead of you; even when you are happy part of you will always be grieving for your lost future, but you can still have some really good times as well. Dementia is a rollercoaster ride, both for sufferers and carers; the sufferer has no choice but to take the ride; we as carers can take the decision to get on or not. If anyone asked me to get on a rollercoaster I would be scared out of my mind, but my sons tell me of the fantastic thrills - my fear won't let me get on- so I don't get to experience the thrills. I have sat with my mum on her ride though, and learned how strong love is.
Sorry I'm waffling. Don't be afraid - you have a 'family' here now who will listen, and support you. We do not know your pain, but we have a better understanding of it than most.
Take care.
Love Amy
Hello Pam Having just read your first message I thought I'd tell you that you're not alone in having a husband with early on-set dementia. My husband was diagnosed 2 and a half years ago at the age of 54. I am 48 and we have three children ranging from 26 down to 9 years old. It is very difficult at first, but you do adjust gradually. It is still taking myself and our family time to come to terms with it all. Some days are very trying and I find myself shouting at everyone, others are good days. Colin, my husband, has this need to wander everywhere, he'll be gone for hours and hours and makes his feet very sore, but no amount of reasoning will make him stop. He attends a day care centre for two days a week at the moment which is a help as I still work every day. I have a very good CPN, who I can contact any time I need any advice. This is just a short intro message, hope to speak to you again soon.
Hi Pam
Jan was 51 when her symptoms started, I was 44. She is now 65, is at an advanced stage and has lived in a care home for 5 years though I visit frequently.
Just to say you aren't alone and things that others have experienced may help you in times to come. Each situation is slightly different, but generally someone on TP has a contribution to make in helping us understand things better.
Welcome to this forum.
Jan was 51 when her symptoms started, I was 44. She is now 65, is at an advanced stage and has lived in a care home for 5 years though I visit frequently.
Just to say you aren't alone and things that others have experienced may help you in times to come. Each situation is slightly different, but generally someone on TP has a contribution to make in helping us understand things better.
Welcome to this forum.
Hello Pam
I was 52 when my husband was first diagnosed with AD.Yes you do feel your life has ended and you constantly feel miserable and you look at other couples and wonder why. There is no answer and I dont think its a disease you ever accept. Believe me you do get the courage and strength to deal with it and every day being different you have something new to experience and learn from.
Please dont do what I did and keep your emotions locked up inside you.I had tried so hard to find someone in a similar position.I can tell you that it is still very difficult for me even now to open up but I do try very hard.
Talk about it , ask questions and get as much help as possible. Now that you have found this site use it to share and get information and support.
I know what its like to want to talk to someone in the same position, if I can be of any help dont hesitate.
Pat
I was 52 when my husband was first diagnosed with AD.Yes you do feel your life has ended and you constantly feel miserable and you look at other couples and wonder why. There is no answer and I dont think its a disease you ever accept. Believe me you do get the courage and strength to deal with it and every day being different you have something new to experience and learn from.
Please dont do what I did and keep your emotions locked up inside you.I had tried so hard to find someone in a similar position.I can tell you that it is still very difficult for me even now to open up but I do try very hard.
Talk about it , ask questions and get as much help as possible. Now that you have found this site use it to share and get information and support.
I know what its like to want to talk to someone in the same position, if I can be of any help dont hesitate.
Pat
Hi Pam, May I introduce myself . I am 51 and my husband is 53 and has early onset AD. He was diognosed at around 1999----2000 and is now very advanced. We live in a small town in Australia and he is the only early onset AD sufferer here, which made it very difficult ,or should I say impossible for me to talk to someone with first hand experience of caring for a partner with this illness.I had truck loads of written material given to me about AD but it seemed mainly to relate to older people with a small section on early onset which seemed basically to say that ' it was possible!'. I found the first few years really difficult. It seemed as if I was never given a straight answer to any of my questions, always the same reply,' We can't really tell you exactly what is going to happen as every case is different' and I know this is true, but it just made me feel lost and confused. If I remained positive , I was in denial, if I fell to pieces everyone around me fell too. We have 5 children who at the time were 30,28,20,18 and 16 all at important stages of their lives so I had them to think about, this was their Dad and he was a strong role model in their lives, he was there for help, advice and the odd hand out, as well as love, and explaining to them was awful. I did most of my crying in the shower or somewhere out of sight, and learnt that a bottle of eye drops and make up for my red nose helped heaps. Because of the uncertainty of the diognoses, and my husbands level of confusion at that time, explaining to him what was happening was a real problem so I eventually told him that he just had a few brian problems that were caused by the chemicals he had worked with as a spray painter, and that he would just have to take an early retirement. If I mentioned the word 'Alzheimers', he would just get angry and confused as if I didn't know what I was talking about. This meant that I had to keep fairly cheery around him. But as things got worse he hit some really low spots and so did I, but I won't go into these now.To cut a long story short, Pam these last few years have been difficult physically, emotionally, and financially. The strain on the family has also caused it's problems. But for me as a woman and a wife it has been a lonely personal journey , scared of today and scared of the future, this AD support group has been the only place I have been able to talk to anyone who I thought would really understand, even if it is on the other side of the world .People I know here in town would listen to me sympathetically and mean well, they couldn't truely understand what I was feeling I know it sounds harsh but it's as if they just felt sorry for me and were so grateful it wasn't them. Anyway I've survived and I want you to know that if there is anything you ever want to ask or talk about please feel free , and I will answer as openly and honestly as I can about what I have felt or experience in my situation as this is what I truley missed and desperately needed...............................Cheers Daizee
thanks
Thank you all...near and far for your replies. you're right ...sharing your feelings with people in similar situations does help. I've been told to try to get some counselling from either psychiatrists or cognotive therapists...and i have asked the doctor to put me on a list...i cant justify going private at £70+ a time.
I think i just have to come to terms with my lot...i really dont want to spend the rest of my days as a carer but i have little choice. the man i married and loved for so long is no longer the same man..he is more like a child....and thats not why i married him. i'm scared i will come to resent him...even hate him...what a selfish thing to say ...but if i cant tell the truth here where can i? i'm still young...isnt 50 the new40!! i still want to go out and socialise...and yes i want to be loved and cared for. i've already had enough of being the strong partner, managing the finances and making the decisions on my own...and its only been a few months since the diagnosis altho i knew things weren't right 2 years ago. i know young widows who have to do the same thing...but i envy their closure on their mourning and the ability, shoud they wish, to move on and start anew. i feel that that has been denied to me. i know i should be grateful for the good things in my life..and there are many i'm sure, but i often just feel so sorry for myself. i hope to draw strength andhelp form this site. thanks everyone Pam
Thank you all...near and far for your replies. you're right ...sharing your feelings with people in similar situations does help. I've been told to try to get some counselling from either psychiatrists or cognotive therapists...and i have asked the doctor to put me on a list...i cant justify going private at £70+ a time.
I think i just have to come to terms with my lot...i really dont want to spend the rest of my days as a carer but i have little choice. the man i married and loved for so long is no longer the same man..he is more like a child....and thats not why i married him. i'm scared i will come to resent him...even hate him...what a selfish thing to say ...but if i cant tell the truth here where can i? i'm still young...isnt 50 the new40!! i still want to go out and socialise...and yes i want to be loved and cared for. i've already had enough of being the strong partner, managing the finances and making the decisions on my own...and its only been a few months since the diagnosis altho i knew things weren't right 2 years ago. i know young widows who have to do the same thing...but i envy their closure on their mourning and the ability, shoud they wish, to move on and start anew. i feel that that has been denied to me. i know i should be grateful for the good things in my life..and there are many i'm sure, but i often just feel so sorry for myself. i hope to draw strength andhelp form this site. thanks everyone Pam
Pan, the emotions and fears you have expressed today are not unique, others have felt & said the same, and are nothing to be ashamed of. Your mind must be whirling with "what if" and "will I" questions & imaginings, and it's only natural for you to be wondering where YOU fit into all this. Alzheimer's doesn't only affect the patient.
Hang in there, keep posting, venting, crying, raging - whatever it takes.
Hugs & Best wishes
Hang in there, keep posting, venting, crying, raging - whatever it takes.
Hugs & Best wishes
