Only Married 8 years and together 14. Husband diagnosed 2 years ago. Very Difficult

[Lucy Grace]

I am new to this so slightly nervous. In 2013 when my husband was diagnosed with early dementia it was a terrible shock to both of us - never having had the condition in my family I was totally at sea as to how to cope. Of course, in the beginning my husband did not acknowledge anything was wrong and most people seeing him in a social environment would never know he had a problem.

2 yrs later it is a very different story and what is so sad is he is not the man I married and has turned into a stranger. The truth is I am no longer in love with him but these feelings were there before the diagnosis. I find caring for him very difficult because of my mixed feelings. I do feel sorry for him that he has dementia but his denial of it and aggressive behaviour towards me makes me wonder what I am doing with him. I never imagined my retirement years to be this miserable. I am a very social person and do have my own life but I feel like I am in a prison.

The reason I am writing on this forum is that most people I have come across who have a partner with dementia have been in a long and loving relationship and therefore feel in a different way about caring for them. I feel trapped.

 

[marionq]

You are not alone with these feelings and that is what makes being a carer so difficult. I was very young, 21, when I married and never regretted it as I doubt I would have found anyone I was more compatible with or loved more.

But..... The person I have been living with in recent years is not the person I loved being with. John is still a good natured sociable being but requires 24 hour attention as he is lost by the time he gets to the end of our street and does not know his own address.

I am very independent and want my own life back and I cannot have it unless he goes into care. Much of what I have seen I don't like. I do like the day centres and spent an hour in a new one on Friday which he will start this coming week.

If you stay with your husband then you need to look at structures which will care for him and give you time to yourself. Make all the contacts you can so that if respite or permanent care become a reality you will have people to help you through this.

 

[stanleypj]

Yours is a very difficult situation Lucy but there are other members who have posted in similar terms. I hope some of them will respond on this thread.

I hope you are aware that no-one is forced to care for someone and if the time comes when you reach the point where you decide that you no longer want to spend your life in this way there are other options, as you know.

I had only been with Sue for 5 years when the first signs of the condition appeared. Even during those 5 years she had a lot of debilitating illnesses, mostly viral infections, so I never knew her when she was ordinarily healthy. But meeting her still has to count as the best thing that ever happened to me and I will continue to care for as long as I can. But I find it hard to imagine that I could do this for someone I didn't love. The fact that you have come this far with your husband, in the context you describe, is worthy of admiration.

and I should have said 'Welcome to to TP'.

 

[Cat27]

I am new to this so slightly nervous. In 2013 when my husband was diagnosed with early dementia it was a terrible shock to both of us - never having had the condition in my family I was totally at sea as to how to cope. Of course, in the beginning my husband did not acknowledge anything was wrong and most people seeing him in a social environment would never know he had a problem.

2 yrs later it is a very different story and what is so sad is he is not the man I married and has turned into a stranger. The truth is I am no longer in love with him but these feelings were there before the diagnosis. I find caring for him very difficult because of my mixed feelings. I do feel sorry for him that he has dementia but his denial of it and aggressive behaviour towards me makes me wonder what I am doing with him. I never imagined my retirement years to be this miserable. I am a very social person and do have my own life but I feel like I am in a prison.

The reason I am writing on this forum is that most people I have come across who have a partner with dementia have been in a long and loving relationship and therefore feel in a different way about caring for them. I feel trapped.

Welcome to TP Lucy

There are comments & threads on here from people feeling the same as you.

Get some help ie carers or day centre & do what you need to do to cope.

 

[chick1962]

Welcome Lucy , I have only been with my husband for 6 years and we got married in 2011 and shortly afterwards found out he got dementia . He is 65 and I am 53 . I do love my husband and I am heartbroken we face this journey . We take each day as it comes and focus on the good things and what he can still do, rather then the things he can't. Nobody can make you care for someone and the journey is a difficult one. However there is help out there like carer support, Crossroads, adult social services and Admiral nurses. Perhaps you should talk to someone about how you feel my lovely. Sorry you having to go through this . Lots of hugs xxx


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[1mindy]

Hi Lucy. I felt the same as you that everyone else was selfless loved their partners and were committed to their journey together. I thought I was different .Last week I posted that I fe!Lt I was about to give up on our relationship. The arguments the nasty comments and just the whole feeling that I am too young to give up my life .I will be old and not have had a life if I committ to him. Unlike you we did have a good relationship and prior to this did love him. Now I'm no longer in love with this man because of who he has turned into. So I would say don't feel guilty just do what you feel is right for you and at the same time try to support him in the transition.So difficult as nothing is black and white and days living with this are very changeable.

 

[Lawson58]

Hi Lucy Grace,

I am really sorry that you find yourself in this difficult situation. There are lots of people who manage to remain in loving relationships despite AD but I am not one of them.

OH was showing obvious signs of having this disease for 3 years before I with the wonderful assistance from our GP managed to get a diagnosis. He had been showing signs of confusion, some memory problems and a huge amount of paranoia. And it was the paranoia that destroyed our marriage. Three years of battles and accusations, anger and resentment on both sides meant that emotionally there was nothing left. And all this was prior to getting the diagnosis. He also has other major health issues and survived a cardiac arrest two years ago.

I made the decision to stay with him because I knew that he would not be able to care for himself and to divide our assets and finances would have been a really dumb thing for us to do.

I know there are people on this forum who say that it is impossible to care for a person with AD unless you love them but I think that is ridiculous. I always think that being detached from the person you care for has distinct advantages as I find that when OH says something hurtful, it no longer causes me distress. I am able to use a very conversational tone of voice which gets better results when I have to get him to do something. We are managing to live with each other more comfortably now than prior to his diagnosis, far fewer arguments helped no doubt by his medication.

You don't say how old you both are and I think that if you are younger then your decision could be quite different to the one I made. We are both in our seventies.

You are the only one who can decide what you want from your life and not for any one else to be judgmental of your choice. But give yourself time to think about it before you make a move as it has to be something you can do with no regrets.

I wish you strength and good luck.

 

[Lucy Grace]

Sad Tuesday!

Yours is a very difficult situation Lucy but there are other members who have posted in similar terms. I hope some of them will respond on this thread.

I hope you are aware that no-one is forced to care for someone and if the time comes when you reach the point where you decide that you no longer want to spend your life in this way there are other options, as you know.

I had only been with Sue for 5 years when the first signs of the condition appeared. Even during those 5 years she had a lot of debilitating illnesses, mostly viral infections, so I never knew her when she was ordinarily healthy. But meeting her still has to count as the best thing that ever happened to me and I will continue to care for as long as I can. But I find it hard to imagine that I could do this for someone I didn't love. The fact that you have come this far with your husband, in the context you describe, is worthy of admiration. and I should have said 'Welcome to to TP'.

Hello Stanley

Thank you for your kind words. I am someone who is very loyal and know I could not live with myself if I walked out. I suppose at the moment I am finding life hard trying to get myself fit again to cope with my husband. I am a very determined person but today I am very sad as my daughter leaves for Germany. She has been a marvellous help to me and I will miss her. I am very much a people person and I get my energy from other people but with A he does not talk much anymore.

You sound a lovely man and Sue is very lucky to have you.

I try and live each day as it comes.

Take care

 

[Lucy Grace]

Hi Lucy Grace,

I am really sorry that you find yourself in this difficult situation. There are lots of people who manage to remain in loving relationships despite AD but I am not one of them.

OH was showing obvious signs of having this disease for 3 years before I with the wonderful assistance from our GP managed to get a diagnosis. He had been showing signs of confusion, some memory problems and a huge amount of paranoia. And it was the paranoia that destroyed our marriage. Three years of battles and accusations, anger and resentment on both sides meant that emotionally there was nothing left. And all this was prior to getting the diagnosis. He also has other major health issues and survived a cardiac arrest two years ago.

I made the decision to stay with him because I knew that he would not be able to care for himself and to divide our assets and finances would have been a really dumb thing for us to do.

I know there are people on this forum who say that it is impossible to care for a person with AD unless you love them but I think that is ridiculous. I always think that being detached from the person you care for has distinct advantages as I find that when OH says something hurtful, it no longer causes me distress. I am able to use a very conversational tone of voice which gets better results when I have to get him to do something. We are managing to live with each other more comfortably now than prior to his diagnosis, far fewer arguments helped no doubt by his medication.

You don't say how old you both are and I think that if you are younger then your decision could be quite different to the one I made. We are both in our seventies.

You are the only one who can decide what you want from your life and not for any one else to be judgmental of your choice. But give yourself time to think about it before you make a move as it has to be something you can do with no regrets.

I wish you strength and good luck.

Hello Lawson58

Thank you for your e-mail. I totally agree with you that when emotions are not involved it is easier not to get hurt by comments and behaviour. The other advantage is if we have a dis-agreement - 2 mins later he has forgotten all about it so no hard feelings.

My youngest daughter lives with her husband and sons in Perth, Australia which she loves. I have never been because many years ago I had a very major back 'op' - my lumbar spine was fused so even though I have no problems with it now I cannot sit on a plane for any length of time. She is due to visit next year.

I am feeling very sad as my eldest daughter has just left to go back to Germany having been here for 2 weeks looking after me. We get on very well and have lots of laughs and now I am left with a man who hardly speaks!!

What has upset everything is I had a freak fall at the beginning of Aug. I had been swimming and after drying my hair I put the hairdryer down on the ledge - turned and caught my foot in the cable and went crashing down on a stone floor and smashed my hip. I was rushed to hospital and was there for 10 days having been given a new hip. I then went to a rehab centre and they worked me very hard and on the day before I was due to leave my hip became very swollen. My youngest son had come to look after me and the first night home the wound burst and blood and water spurted out so he took me to Abingdon Hospital where they dressed the wound. To cut a very long story short 5 days later I was re-admitted to hospital as they felt the wound had become infected - thankfully it hadn't. My daughter came over to look after me but found herself looking after my husband while I was in hospital and she now knows what I have to cope with.

I am 74 yrs old and my husband is 81 and physically is very fit. Back in 2004 we both walked with our 3 dogs from Land's End to John O'Groats in aid of Prostate Cancer and it took 3 months. It was a great achievement and one I will never forget.

Take care - it has been lovely writing to you

Lucy Grace

 

[Lawson58]

Hi Lucy,

You have had such a rough time in the last few months. It is not at all surprising that you feel so down in the dumps and I really hope as your health improves that you find yourself in a better place emotionally and mentally.

I have no idea of what support you can get from your local authorities but it certainly sounds as if you need some help.

While your husband doesn't talk much, mine won't stop. He rambles on and on saying the same things over and over and talks constantly through TV programs etc so I would just love to have some peace and quiet!

There is one thing I did that got me through all those feelings of resentment and anger about having my life stolen from me and that was to make some plans for my own future, for the time when Oh would either be in care or had passed on. That sounds a little brutal perhaps but I needed a lifeline. My plans may never eventuate but that is not the point. We all need a little hope, and to enjoy the prospect of doing what we enjoy most.

So I have some plans in my head for some travel and that involves some tentative ideas about what I will need to do with the dog, the house, the car and so on. And I want to get involved with a different area of volunteer work and I spend a little time preparing for that. Of course I can't make any definite plans but I love looking at possible destinations and it distracts me from getting bogged down in my day to day problems.

I don't know how your finances are but perhaps one day you could visit your daughter in the lovely city of Perth by flying first class, you know where you can actually stretch out to sleep.

I do hope that you are feeling better soon.

 

[Lawson58]

Just interested to know if you have mentioned your husband's aggression to your GP?

OH was initially on Donepezil which didn't agree with him but is now on rivastigmine and I believe that it has been a huge help in reducing his paranoia. Maybe there is a medication that could be helpful for your husband. I know that there a few people on TP who have had this problem and sometimes patients respond well to a variety of drugs though it depends on the type of dementia they have.

 

[Lucy Grace]

Trying to be Positive

Hi Lucy,

You have had such a rough time in the last few months. It is not at all surprising that you feel so down in the dumps and I really hope as your health improves that you find yourself in a better place emotionally and mentally.

I have no idea of what support you can get from your local authorities but it certainly sounds as if you need some help.

While your husband doesn't talk much, mine won't stop. He rambles on and on saying the same things over and over and talks constantly through TV programs etc so I would just love to have some peace and quiet!

There is one thing I did that got me through all those feelings of resentment and anger about having my life stolen from me and that was to make some plans for my own future, for the time when Oh would either be in care or had passed on. That sounds a little brutal perhaps but I needed a lifeline. My plans may never eventuate but that is not the point. We all need a little hope, and to enjoy the prospect of doing what we enjoy most.

So I have some plans in my head for some travel and that involves some tentative ideas about what I will need to do with the dog, the house, the car and so on. And I want to get involved with a different area of volunteer work and I spend a little time preparing for that. Of course I can't make any definite plans but I love looking at possible destinations and it distracts me from getting bogged down in my day to day problems.

I don't know how your finances are but perhaps one day you could visit your daughter in the lovely city of Perth by flying first class, you know where you can actually stretch out to sleep.

I do hope that you are feeling better soon.

Hello Lawson 58

Thank you for replying. Every day I am getting stronger doing my exercises, walking and going in the pool. I have always been a very fit person and swim 2-3 times a week but of course at the moment I can only do hydrotherapy in the pool. I am a very positive person but this accident has knocked my confidence. I have seen A deteriorate and this morning I lost it with him as he cannot remember anything - I know it is not his fault but I am now having to remind him of everything.

I do have a busy life normally and can't wait to get back to it. Next Thursday is my 6 week check-up so I hope I will be able to drive again. I go to a support group in a nearby town and last summer I did a 12 week Cognitive Behavioural Course which helped me a lot but then A was not too bad.

It is strange that your husband never stops talking and mine hardly says a word!!! If I ever say anything he doesn't like he cries or sulks. I married him because he had a wonderful temperament with a very good sense of humour. Back in 2004 we walked from Land's End to John O'Groats with our 3 dogs for Prostate Cancer sponsored by A's company.

I think you have a very good idea planning things for the future and I am going to try and do that. I will be going to Hamburg to see my daughter at the beginning of Nov. so I have that to look forward to.

What I wish for is that A's family showed more interest but they really don't want to know.

Like you it would make no sense financially if I left Alistair so I just have to try and plan my own life so I can escape.

Take care and try and keep smiling.

Lucy Grace

 

[Lawson58]

Hi Lucy,

I do hope that all goes well for you at your check up. You do sound as if you are feeling better and it is great that you are making plans to visit your daughter in November. I think too that once you can drive again and can get back to your fitness routine that life will start to look better for you.

From what you say about your walk from the bottom to the top of Britain, you must have had an excellent relationship with your husband. But please don't feel guilty about losing it at times when you get frustrated with having to remind him about everything. None of us are saints and we all do it from time to time. And if we ourselves are unwell or tired it happens more frequently so please don't beat yourself up about it.

Caring for someone with dementia can be a pretty thankless task and none of us know for how long we will have to endure so we all need to find whatever it is that works for you.

Best wishes.