1. Frodocat

    Frodocat Registered User

    Mar 21, 2016
    My husband has recently been diagnosed with Altzheimers although so far does not seem to be following the normal path. I have been a reluctant carer for him for 7 years through a bumpy ride of epilepsy followed by complete heart block needing a pacemaker and then a serious motorcycle accident and now finally the diagnosis I and our sons have known for over 3 years.
    When I say reluctant carer, we have not been close for many years and just before all this started, I had decided to end the marriage. Obviously I am still here.
    Things got very bad at Christmas and T ended up in hospital having become incontinent and immobile. Followed by rehab and care home respite. I was poorly myself and virtually had a breakdown. Crying all the time, panic attacks etc. T made steady progress and eventually came home again. Although the break gave me time to recover it also made me realise how much I resented him. I feel totally trapped and although we now have a full care package I end up wandering round shops all day to keep me away from our home I only go home when I have to.
    I realise that compared to most carers I am a complete failure but I have had to accept my feelings and just try and survive in this nightmare existence.
  2. Aisling

    Aisling Registered User

    Dec 5, 2015

    You are not a failure. Don't please compare yourself to other carers/ other people. You are in an awful position. Is there anything I can do to help you?


  3. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Hi Frodo, welcome to TP
    I've always wondered how someone in a less than strong relationship copes...now I know and it is just how I imagined it would be:(
    I think you should contact your local services and ask them to do and adult assessment on you and tell them how you feel, particularly given the obvious distress it's causing you as a person. They have to consider the impact it's having on you as well as him.
    I think it would be for the best if he went into full time care from the sound of it, if it comes to it tell them you're quitting, packing your bags and leaving, what are they going to do for him when that happens.
    I don't see you as a failure I did it for as long as I could but when it all got too much (violence mainly) I got help and she's in care now, I don't think I failed we al have a breaking point.
    Keep posting
  4. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    My heart goes out to you, and I don't think anyone here (who all understand just how hard it is) would ever think that you're a failure. Rest assured that you will get lots of help and support here.

  5. Lawson58

    Lawson58 Registered User

    Hi Frodo,

    Welcome to TP though it is sad that you had to find us here.

    There are many people out there who are caring for someone they love deeply and spend years grieving as the person gradually disappears physically and emotionally. But there are many others who are just like you and me who through no fault of their own, find themselves trapped in a situation that gives them no control over their lives, having to care for a person who was actually lost to you years ago.

    You have obviously had a rough few years and it is not surprising that you have been having issues of your own. Caring is stressful for all of us and you have no need to think of yourself as a failure and just like the rest of us there sometimes comes a time when you reach the limits of your endurance.

    It took me three years to get OH to the point where he was diagnosed with AD and those years really took their toll on our relationship and at one stage we discussed the possibility of separation.

    There were many good reasons for staying together, the obvious one being financial.
    But his overall health is poor and as he has no other family living in this country, I couldn't just quit and run especially as I had saved his life when he had a cardiac arrest at home two and a half years ago.

    But I hate it, I resent that I can no longer make any concrete plans for myself for the future and wonder at times how I will get through. I have a great GP who is a tremendous support and I hope that you are getting the support you need to help you survive.

    I wish you strength and peace.
  6. marionq

    marionq Registered User

    Apr 24, 2013
    A lot has been written about the effects of dementia on relationships but I have read nothing about the damage or destruction of marriages in the years before a diagnosis. Very often the spouse or partner cannot understand the changes in behaviour, the lack of interest or empathy in anything other than themselves.

    Poor judgement and decision making can strain a marriage to breaking point and just as the partner is ready to leave a diagnosis of dementia explains it all. The trouble is that the damage has been done and the pre dementia feelings have gone.

    I hear so many people say that they stayed in the marriage because of the diagnosis but resent the loss of those years when they were not happy but felt guilt tripped because of past feelings. So, your reluctance is not unusual and rather than inadequate you are heroic for sticking with a partner that you had fallen out of love with.
  7. Quilty

    Quilty Registered User

    Aug 28, 2014
    You are certainly not a failure. You are still there even though you dont want to be.

    I agree with the others. Ask for respite then say you cant take him back. You cant be forced to take care of another adult and you sound to be at breaking point.

    Have you spoke to your doctor? This could get the ball rolling.

    Sending you a big hug and some strength
    Love quilty
  8. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    Your feelings are not unusual, even carers who dearly love their cared for have feelings of resentment, no life of their own, no time, no thanks etc. Dementia is a very difficult disease to live with and to care for and we can only do our best. We all have different strengths.
  9. Jennyc

    Jennyc Registered User

    Oct 3, 2011
    Hello Frodo, these pages do help. I, like you, am a reluctant carer. Our marriage was not happy for many years, and when I retired, the plan was that for financial reasons we would continue to share our house, but do our own things. (My husband had not earned for many years, suffered from depression and was rather an aggressive, bullying person, our two daughters left home at the earliest opportunity but still are very close to me).

    I retired, ready to travel and leave husband at home growing vegetables, his main interest. Alzheimers struck. Here I still am, 5 years later. He now thinks our marriage was the happiest ever, is very dependent, can't dress himself properly or cook or work tv, or drive, or shop, or hold a conversation.

    I've got used to it. Reading these pages from time to time does help, though I can't stop feeling how lucky people are when their partner dies, what a release, but of course they are devastated because they actually loved their person. I did some online counselling a year ago, which helped a bit though as the circumstances cannot be changed, it outran its usefullness. I was overwhelmed with feelings of bitterness, resentment, why should this happen to me? But it gave me some coping strategies. It's maybe worth trying for you.

    Not sure how I'll cope as things progress, but for now, I make sure I find some time for me, i don't argue or reason, I keep the peace, I answer the same question a hundred times an hour, and life if limited, is bearable. If you are going to stay (I would have felt too guilty to leave, marriage vows and all that, under the circumstances) then you need to make sure to hang on to your friends, to do things YOU want to do from time to time, and keep talking to people. I feel for you.
  10. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    Absolutely not a failure Frodocat, as Marion said you are a hero. I think a lot of us, maybe all, tend to look at other people and feel inadequate. I know I do, even though I say other people shouldn't, because the journey is so hard whatever stage you're at. For you there is the added anguish that you are having to give up so much for someone you haven't wanted to be with for a long time. Very good advice given in previous posts so I hope this helps you to find a way through, and I'm sure it will be helpful for you to be part of the TP family. Sending you a big hug.
  11. Allypally67

    Allypally67 Registered User

    Feb 20, 2016
    West Sussex
    Hi Frodo,
    I think you deserve a medal and are far from a failure!
    It is early days for me but I am already finding it difficult at times with my mum and we have always been so close (she is my best friend as well as my mum!) so I can only imagine how hard it is for you and my heart definitely goes out to you.
    All I can say is you MUST look after yourself! Really listen to the others on here with more experience/understanding. It really sounds as if you need to get respite at the very least.
    Sending big virtual (((hugs))) I really hope you can sort something out. I will be thinking of you.
    Allypally67 x
  12. triumph25

    triumph25 Registered User

    Apr 2, 2012
    Forest of Dean
    Hi Frodo, believe me I do know how you feel. When my O/H was diagnosed with young onset Alzheimer's, we too had talked of splitting up! We aren't married and had only been together for 6 years and the last 3 if those were a emotionally a desert!

    However, I stayed, and as a result, like you, feel trapped, overwhelmed, resentful, and as if I have no life of my own, and I am not old! (Although I fell at least 80 some days)

    BUT, the one thing I don't feel is guilty or a failure!

    And no-way should you!

    The people here on TP are wonderfully supportive and non judgemental, so all I can say is keep posting, try not to feel in any way inadequate, because you are not! And give yourself credit for the things you do do so well!
  13. Slugsta

    Slugsta Registered User

    Hello and welcome to TP, although I am sorry you have need of us.

    You are far from being a failure,you are doing your very best to care for a man whom you no longer love. On top of that is the difficult behaviour that often goes hand in hand with dementia. And yet you are still there.

    Take a bow. Take a medal. Take a break. Don't beat yourself up for being human!
  14. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    Hi Frodo, and a warm welcome from me to Talking Point. :) You'll soon find, as I did, that these Cyber Friends understand far more than many of our "real life" ones, and will give you lots of help and support.

    You're doing a brilliant job, under very difficult circumstances, and we can all only do our best. I used to say that sometimes my best might not have been as good as others, sometimes it might have been better, but it was all I had, and I did all I could.

    Sweetie - you're not a failure - you're a star. :) xxx
  15. Frodocat

    Frodocat Registered User

    Mar 21, 2016
    Thank you so much. All you kind comments have really helped me. It does sound like you have already been to a similar place.
  16. Frodocat

    Frodocat Registered User

    Mar 21, 2016
    Thank you so much for your kind words. They have really helped me.☺
  17. elizabeth hc

    elizabeth hc Registered User

    Oct 31, 2012
    It was reassuring to know I am not the only one looking after O.H when before the diagnosis I was thinking of moving on. He was always very selfish and if I was brave enough I should have left years ago Anyway dementia caught up with us so I guess I will stay for the long haul. If I think about it I could be bitter but that is a wasted emotion so try and block it out

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