Feeling overwhelmed by the task ahead

Discussion in 'I have a partner with dementia' started by Fifon, Aug 25, 2015.

  1. Fifon

    Fifon Registered User

    Aug 8, 2015
    My OH and I are both 75, and he was diagnosed with Alzheimer's in February this year, though in reality had been having problems for at least a year before then, probably longer. He is in total denial of this, thinks all is well despite the 'odd' behaviour and his inability to converse, organise things etc, of which I am sure you are all familiar. He shadows me constantly and resents it if I go out to meet a friend. He does nothing all day unless I take him out, just sits staring into space, or watching TV. He is always asking me what I want to do, when he really means what are we going to do. He does help a little with household chores, though mostly I have to put things right when he does them, putting wrong bins out, emptying things into the wrong bins, things like that. When we visit friends he says little. I try to suggest things he might like to do but if I am not involved in them he isnt interested. He has occasionally taken himself off to the local shop but even then things go wrong, and I now worry if he is out on his own. When I remind him to take care he just laughs, as he does at most things I ask him to do. My contact with support is difficult as he cant accept he has a problem, and although I have someone coming to see me soon I know he will expect to be there when they talk to me, so thats not going to be much help. I dont want to go to bed at the same time as him as I value the few minutes I have by myself, and anyway I can't sleep for worrying about the future. I feel completely inadequate to cope with what lies ahead, so any tips on this would be really helpful. Sorry to rant on, I am usually a happy person who is able to enjoy life. I should say that my children are concerned, though because they think their father is wonderful I feel I cannot share things with them.
  2. JayGun

    JayGun Registered User

    Jun 24, 2013
    I would suggest that you enlist the family my lovely. Nobody can do all this alone and also, since dementia is a progressive disease they might want to know as soon as possible so that they can spend more time with him now in the early stages.

    Could one of them take a day out of their annual leave and come and take dear old dad out for a bit while you have your visitor perhaps?
  3. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    #3 sistermillicent, Aug 26, 2015
    Last edited: Aug 26, 2015
    please share things with your children, they will know that their wonderful father is ill, he won't stop being wonderful to them.
    My dad didn't share things with me soon enough and I was upset that he hadn't. I felt awful that he had struggled without adequate help from me until things got really quite terrible.

    The person coming to see you may be able to bring someone who sits with your husband while you talk in another room, they did this when dad and I had to talk to SS about things and they were very good at distracting mum for long enough. However, I really would ask your children for assistance, I feel sure they would want to be involved. Dementia doesn't make children stop caring about their parents, believe me. (I'm not a child, I'm 60!! but you know what I mean)
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Hi Fifon
    I can identify with what you're saying, I had to give up work in August 2014 to look after my wife and since then it's been 24 hours a day 7 days a week joined at the hip.
    She's no longer capable of doing anything around the house but is still reasonably mobile so I do all the housework, garden basically everything, I sometime wonder if it's like being a single mum with a small child, you have to do everything for them as well as yourself, you're constantly looking out for them all the time.
    We had to give up going to the pub with friends or for a meal over a year ago, it just got too unpredictable and anyway people stopped asking us.
    I wonder about the future too, I don't get a pension for anther 7 years (I'm only 59) and my wife get's hers next February I think just before her 63rd birthday so money other than carer's allowance, DLA and mobility allowance (we're still on the old system) is an issue.
    Maybe I'm more fatalistic than you but I don't worry about the future because I don't think about the future, as there's nothing I can do to change it so why worry? It might sound a bit stupid but as an aging hippy I just think that way, I just take everyday as it comes good, bad or indifferent.
    I suppose I'm just waiting for a crisis when something happens to force a change, sudden illness, run out of money and have to downsize, who knows what the future holds but until then I refuse to waste my present worrying about it.
    In the meantime I have some "me time" on here some nights or watch a bit of late night poker or a quiz programme on TV, since she became ill my wife doesn't like quiz's anymore.
  5. 1mindy

    1mindy Registered User

    Jul 21, 2015
    Morning Fifon.
    It is difficult when you cannot just get on. I think what you are going through is typical. My husband does not do anything without instruction , he will sit all day if I dont organise tasks for him. He doesn't do them well but I just let him get on and sort it when he is not looking, it keeps him occupied. He has increasingly started to resent me going out with my daughter or friends for a few hours but he doesn't want to socialise now.
    The person you have coming over ,if it is from the mental health team I suggest they speak to your husband on his own first so he feels he can talk in private too. I always do this with our health team nurse so that I can then talk in private too .Then we all speak together but that is just chit chat. I know what my husband says but he never knows what I say. Works for me. Your children need to know how you are and what is happening. This is why I meet my daughter a few times a week for coffee .Only for an hour ,it gives me a break ,she adores her dad and knows I need support. My son is just getting it now and spends time with me too. His dad thinks he is the devil incarnate so currently there is no support for his dad from his son .Sad really. But onwards and upwards. I think if you continue talking on the forum you will feel you can talk to people who know what you are going through and support you as best they can .
  6. Fifon

    Fifon Registered User

    Aug 8, 2015
    Hi and thank you, and all the others, for their helpful comments, it is much appreciated. Unfortunately my children do not live that near to us, so visits are always arranged, and they have their own responsibilities at home. Having said that, the eldest one in particular is doing her best to keep in touch, but just doesn't want to hear details. Of course her dad isn't having a normal day when she comes, or we go there, so really doesn't see him in action, so to speak. I am fortunate in that I have a very good friend locally who is really caring, and I know I can bend her ear, but who wants to listen to a moaning Minnie! Anyway I am trying to live each day as it comes and not worry about tomorrow, maybe I'll get better at this as time goes on. Thanks everybody.
  7. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    You'll sometimes be surprised at who does want to listen. Just try and always remember to throw in a cheerful comment as well, as often as you can to lighten your spirits, too. I had to learn that the hard way!
  8. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    I think we mostly find that, as things change, we tend, more or less, to adapt to the situation we find ourselves in. But it's never easy and there are always added complications like a partner being in denial, as in your case.

    As far as your family are concerned, maybe you should encourage them to find out more about dementia, perhaps on here even.

    There are two excellent helplines where you can get advice and support:



    There may be an Admiral Nurse based in your area though there aren't as many as we would like around the country.

    The AS helpline will put you in touch with your nearest AS branch or you can find it on the AZ site,
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    I cared for my mother at home with me after my father past away mum lived with me.
    My life became very isolating when my mother was in that stage of shadowing me constantly & resenting me if I went out or even if friends came around.
    Only when mums spatial awareness, mobilty get worse did the constant shadowning stop.

    When this person comes around to talk to you your husband there also is it about getting support for you ?
  10. pippop1

    pippop1 Registered User

    Apr 8, 2013
    Write a note

    And when the person comes to see you, your OH is there and you don't feel that you can talk freely in front of him, why not have prepared some written notes, bullet points are fine, which say what your concerns are with your husband's behaviour?

    Keep the letter hidden in an envelope in a pocket and hand it very discreetly to the person that comes. Just say something like "Here is the paperwork which you need to read now before our meeting please" and write PRIVATE on the envelope.

    In the letter you can say what you like and explain why discretion is needed.
  11. tigerqueen

    tigerqueen Registered User

    Mar 11, 2014
    #11 tigerqueen, Aug 26, 2015
    Last edited: Aug 26, 2015
    Dear Fifon

    I know exactly how you feel. I too have given up my job to care for my husband even though I am some years away from retirement. I have found the loss of my independence very difficult, but even though my OH resents my trips out to see others I regularly arrange lunches with old work friends etc once a month, which he has to accept. I don't tell him I am going until on the day, and wherever possible I take him out for a walk in the morning. I find this normally tires him out, and he often sleeps for a while whilst I am out so doesn't miss me so much. Initially, he didn't like me going at all, but he seems to accept this better now as it's become a regular thing, or maybe I'm a bit more relaxed about going even though I know he doesn't like it!! I just say I'm going out for 2 hours regardless, as he has no concept of time now anyway.

    I also continue to go to the swimming pool or gym in the morning before he gets up, and when I get back we have breakfast together. Whilst this might not be something you want to do, are there any hobbies you have that you could join a group to go to.

    This constant demand of our time is very hard to accept, I can't even go to the toilet without him following me, but I do understand why he does it. His whole world is shrinking and is hard to understand, so I am the only constant in his very scary life and he's constantly looking for reassurance. But just because I understand doesn't make it any easier. I just know that if I neglect my welfare I won't be able to cope.

    Please involve your family as much as you can, but it can be hard for them to hear how much their dear dad is deteriorating. My family were very willing to help when I asked them to do specific things for me, but they need to be guided by you as you are now the expert in what you need and what your OH needs. My daughter saw I was struggling and called a family meeting without their Dad so I could talk freely about what help I needed.

    I have found the local Alzheimers society have some great groups that I can take him too, and this just takes the pressure off being cooped up together 24/7, so if your local society have groups do give this a try.
  12. Fifon

    Fifon Registered User

    Aug 8, 2015
    The person coming is from the Admiral nurses, who I believe are coming to offer me support. My OH had a visit from a Memory Advisor, whose only aim seemed to be to apply on his behalf for Attendance Allowance, whereas I just wished she could have talked to him about his condition. She said she was there for him, not me. I have heard from her today that she is leaving, so maybe her replacement, who I gather will contact mein six months, will be able to do this.
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    #13 Margarita, Aug 29, 2015
    Last edited: Aug 29, 2015
    That sounds positive :)

    I am sure they will know how to handle the situation with your husband being there, knowing how difficult he can be in accepting he has a problem, getting support for you .
    I am assuming you have spoken to the Admiral nurse beforehand about that ?
    If not ring them tell them.
    I aways found them very helpful when I rang asking them things about mum .

    I always use to say to my mother it was me that needed support, even thought mum would never admit that she had a memory issue.

    Asking to write down her birthday, date, year .
    In case next time they ask her at the AZ day centre.
    Even thought it would be iralavant that mum would forget it was written down keep in her purse .

    Seems it was about keeping mums dignity, while using tough assertive love on my mother so I could keep on Supporting, caring my mother

    It would be interesting to read how it went on with the Admiral nurses xx
  14. Fifon

    Fifon Registered User

    Aug 8, 2015

    Well have had visits from two lovely ladies, who have given me lots of suggestions re activities for my OH and tips for caring for myself. The first one I saw with OH present, which wasn't the best idea, but I am meeting her for coffee in a few weeks' time. The second one, the Admiral nurse, I actually asked in OH's presence who she had come to see and so I was able to spend a lengthy time with her, following which she had a nice chat with OH and that seemed to satisfy him. I still feel apprehensive about the future as it is clear from all those writing in the forum that things get so much worse, but at least for the moment I have various suggestions to investigate for activities to get him involved in. Today we were out shopping all morning, lunch out at his favourite coffee house, but hadn't been home more than an hour when he was asking if I wanted to go out again, and was very morose when I said no. I find this very hard to deal with as it's exhausting to walk around with him walking two paces behind me. Am I being selfish? What do others do? I obviously want to do the best for him, but even having spent time with the 'professionals' I'm unsure.
  15. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    Yes, there's no doubt that this kind of thing can be very frustrating. And I suppose there will be occasions, there may have been some already, when you're keen to get out and he isn't!

    I'm certainly missing the activities, mostly singing, that Sue and I used to attend. We hope to get back when we've sorted out a wheel-chair and transport. I even miss the walking, believe it or not. And I know all about the two paces behind. In fact I used to slow down to allow Sue to catch up and all that happened was that we would still be walking two paces apart but more and more slowly until we ground to a halt. That was the point when I realised that we had to link arms and walk together.
  16. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    Coming to terms with what's happened is worst in the beginning stages I feel. Later on, you've some experience of living with the problems so it becomes a load that somehow everyone expects to be able to manage (including the patient).
  17. dollydee

    dollydee Registered User

    May 9, 2015
    I totally understand

    Dear Fifon, I seem to be going through very much the same as you. My OH will go out on his own with the dogs, but twice this week one dog has left him and come home alone. I have reluctantly decided that I can't let him take them alone. He loves to go in the garden, but has started pulling out plants. Other than that, he just sits in front of Sky sport all day. He's very kind, and will hoover if I ask, but forgets if he leaves it for 5 minutes. I think he has vascular dementia, although we haven't got a formal diagnosis. We have an appointment with the memory clinic this month. He's got rapidly worse in the last few weeks. It is so very hard to remain cool headed in the face of such memory loss, and his doctor won't talk to me unless he's there. Isn't it just ridiculous that the very person who needs to have help and guidance to care for the patient is prevented from having the information.
  18. Fifon

    Fifon Registered User

    Aug 8, 2015
    Dear dolly dee, I was very fortunate in that my GP was my biggest ally in getting my OH to attend the Memory Clinic. I must say that the consultant, whilst wanting me to be there during the appointments, rarely refers to me, although at the last appt he did ask me how I felt things were going, to which I replied I thought my husband had deteriorated, which was borne out by his mini mental test score, which was down. However it was a relief to get a firm diagnosis at our first appt, confirmed by CT scan at his 2nd appt. Following his diagnosis I got in touch with my local Alzheimer's office, and they arranged visits from the local MIND people followed by Admiral nurse and others, and I have found comfort in knowing there are others available should I need to turn to them. There is also a wonderful listening ear available at the local Alzheimer's office too. I hope that all this will be true for you too, it is so hard to see someone you once relied on turn almost into a child, and not even that, as children will learn as they grow, and we know from what we read in this forum alone that that is not going to happen for our OH. Thinking of you and hoping your consultation will go well.

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