1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Return to Talking Point

Discussion in 'I have a partner with dementia' started by Unhappy15, May 31, 2015.

  1. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
    130
    Hello to you all,

    I did post one thread in February, just after my husbands diagnosis and you replies were so comforting.

    Well here we are three months on and I am still floundering. He was prescribed donepezil which totally disagreed with him and after just two tablets I stopped them. He had two weeks of psychotic episodes which I must admit nearly drove me to a breakdown as we received no help or advice from the memory clinic or the G.P.

    However, Social Services were very helpful and gave me the information I needed to get in touch with carers groups etc.

    The thing that I am struggling with is my resentment at being put in the role of a carer when I know that he would never do this for me, something he always told me. My husband is 81 and I am 12 years younger and I feel that my life is being taken from me. He wants to be with me all of the time even if I am just in another room I am never allowed any peace. I have talked to him about carers but he flatly refuses and just says that I can do it.

    He is at the stage where I have to assist in all of his personal needs otherwise clothes are put on in the wrong order, showering him and assisting with the toilet.

    I just hate it. I know this is a dreadful statement to make and seems uncaring but most days I wake up with a cold feeling in my stomach just dreading the day ahead especially if it is raining when we have pacing for hours on end.

    I do take him out everyday shopping & we have coffee or a meal out but as soon as we are home the difficulties start.

    I just feel trapped and I do apologise but I need to know if other people feel this way, does it pass or does it get worse?
     
  2. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    I don't know if everybody naturally accepts what happens to us when facing dementia, and caring for someone who has it. To help myself, I tried to imagine what having the disease must be like. I don't have it, thank God because I know there would be absolutely no support for me whatsoever.

    I say that without any malice aforethought. I just know it to be the truth.

    You do eventually get used to having to deal with the many and varied issues that come along. Not with joy, perhaps, but with a certain amount of gumption!

    I've been told I should stop trying to be so independent! If I wasn't, I'd never make it. I don't really have any choice if the latest crisis doesn't end well. Still working through that.

    I very much hope that you can find all the support you need, Unhappy. I wish I knew how to comfort you, xxxxx
     
  3. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    Hello. Glad you felt comfortable posting again. :)

    I think many of us need to draw lines in the sand. I became my mother's carer when Dad died, but I knew that I would not be comfortable doing any of the personal care that others on here seem to cope with. That was my line in the sand and if she hadn't moved into a CH, then I would have brought in carers, whether she liked it or not.

    Tbh, if I were in your shoes, carers coming in would be non-negotiable. Your husband has no right to demand that that you undertake this level of care, especially if you know in your heart of hearts he wouldn't do the same for you. My former neighbour is in a similar situation and I've tried endlessly to get her to understand that she too has rights, including the right to say "no, I'm not doing that." But she seems knuckle down to his demands and insists on playing the martyr. Personally, I applaud you for voicing your true feelings on here.
     
  4. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
    130
    Thank you

    Thank you so much, I read the posts and I do feel like some kind of a monster compared with other carers but I want some kind of a life back before its too late for me. I have asked him if we could move to a retirement village where we would not be so isolated but it just meets with a flat refusal. I might just pack up and go on my own and employ a full time carer for him.
     
  5. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,494
    Female
    England
    Unhappy you are not alone with the feelings you are having. I looked after my husband for 7 years at home, no carers and very little proffesional help. My husband was agitated and angry every day, like you are experiencing he was my shadow.

    Every day was the same and they were long days because he never slept and it was not safe to leave him to his own devices.

    I can't remember many days when I did not say " why me? ". We do manage though, how I don't know but we do. My husband has been in care now for nearly three years and when I sit and think I wonder how either of us survived those 7 years. But we did and we are now out the other side, still worrying and caring but at a much slower pace.

    I hope you can start to feel a bit better soon and the advice that SS have given you will help. Keep reading the forum, see how others are dealing with similar problems.
     
  6. Delphie

    Delphie Registered User

    Dec 14, 2011
    1,252
    Easier said than done, but if you feel you can't care for him, or even if you don't want to, then don't do it. It doesn't even matter whether or not he'd care for you, we each have our tolerance levels and if you've reached yours then that's that.

    Unless you have the will to engage in more battles about carers and so on, then consider taking yourself off to stay with a friend or for a holiday, after informing the SS that as of whatever date Mr Unhappy will be on his own and he's a vulnerable adult, so they have a duty of care. Then see what happens...

    Maybe after a break you'll find the situation improved by carers going in, maybe things won't have changed enough for you to want to carry on in the carer role. If it's the latter you have every right to say that this is not for you. You'll probably have to accept living with a level of guilt, but then that's par for the course for most of us anyway, however much we end up doing.
     
  7. Rashley

    Rashley Registered User

    Dec 21, 2014
    20
    Devon
    Hello I thought I would just say that I feel the same as you, but after a lot of pressure I got my husband to agree to carers twice a week for showering. I am having a battle over day care and tomorrow I am trying another CH as he hated the first home. My husband is 73 and I am 69 sometimes I feel too young for all the problems that have arrived with his Vascular Dementia, which was diagnosed in June 2013. Best wishes for the future I know how difficult it is.
     
  8. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,494
    Female
    England
    My husband was 62 when he was diagnosed 10 years ago and I was months off retiring. We have had no retirement just a hard slog to where we are. So like you Rashly feel really robbed of what should have been our time to do just what we wanted with no work getting in the way. Not all doom and gloom though, we have wonderful care for my husband.
     
  9. Mibs

    Mibs Registered User

    May 26, 2014
    73
    Derbyshire
    Years ago I read a post on TP about two sisters who had 'popped' their mother (AD) into a lovely care home, sold her house to pay her fees and got on with their own lives. At the time I thought it was a callous thing to do - now I'm one hundred percent with them.
    I've learnt to differentiate between the disease and my husband - he looks the same, but the dementia is in control of his mind.
    Once you come to this conclusion - and it is a grieving process for the life you've lost - you can start to put yourself back on an equal footing with your partner. Take a step back, make alternative arrangements for care, and hopefully in time you'll achieve a new balance in your lives.
    It's taken me years to realise this - I've just arranged carers for my husband - first day tomorrow and I'm dreading it.
    Take care and keep posting - we're all here for you.
     
  10. sheila55

    sheila55 Registered User

    Feb 6, 2014
    52
    My FIL was being looked after by MIL for a few years. We had got to the stage where she couldn't really cope but when we suggested carers they both refused and were not prepared to discuss it. Eventually things got so bad that the family took matters into their own hands and arranged for carers to come in. Well within a couple of weeks the carers had become friends and were the best thing since sliced bread. I think you just need to bite the bullet. Could you perhaps develop a bad back or something and tell him the carers were just temporary till you recovered? Then hopefully he will get used to them coming in. You are not being selfish, you are entitled to some time for yourself.
     
  11. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,519
    Ireland
    Unhappy - when we are living with someone with dementia, as the illness advances, we are all, like Alice, living through the looking glass! Nothing is as it appears. We go sometimes for years, thinking we can engage in "normal" conversations and that we are and have had rational discussions on such subjects as carers coming in/getting help etc. It's an illusion. It's as if there is a slight "out of sync"ness in the language you are speaking or something. Like a friend of mine, who speaks a language derived from English - it's almost English and I constantly feel if I just listened harder, I'd get it, but I can't understand it! You (like we all did) are behaving as if your husband can still make reasoned, rational decisions about what's needed as regards his care and what you are able to do. It sounds to me as if he can't. I think you need to find a way of introducing carers, and get the help you need.
     
  12. sarahjg

    sarahjg Registered User

    Apr 15, 2015
    17
    #12 sarahjg, May 31, 2015
    Last edited: May 31, 2015
    Hi Unhappy… I was not my dad's full-time carer but my mum was in this position. I think Mum felt increasingly resentful of various things as he has always been a difficult person to deal with! This time last year he was very resistant to any carers, day centres or anything really… Mum was looking after all his personal care needs and although he was unable to manage these himself he was resistant and aggressive. At the time he would not let me help with anything personal ( although this has changed as his condition has worsened)They had some help initially with an electronic chair for the bath and an alert mat for when he got out of bed but Mum was getting very little sleep and she was exhausted. It was difficult to take him out anywhere as he was increasingly immobile but he refused a wheelchair. At home he would not let mum leave him, even for a few minutes to go to another room …
    Over time he did accept carers, an Alzheimer's Society befriended and a day centre- the thought that they were 'nurses' seemed to be helpful at times. The carers were really helpful - they were used to dealing with patients with dementia and the resistance we were worried about was taken in their stride. Even though he was sometimes angry after visits, the fact that it gave Mum a breathing space was so important and ultimately allowed her to keep caring for him for much longer.
    Some of the other posters on here have mentioned the difference between the person and the condition - I know that this was a real problem for my mum.. at some points we just had to make the decisions that were in Dad's best interests although he may not have been in a position to see this.. and to support Mum in these decisions as well.
    Thinking of you x
     
  13. goodtotalkC

    goodtotalkC Registered User

    May 2, 2015
    7
    I know how you feel.

    I feel the same as you. How do other people cope? it amazes me. I lack patience and although I do try, I react too quickly when things happen. MY OH also needs help with all the personal things and hates that as was always a private person. Also My OH blames themself all the time but does get shirty if I gently ( see I do try!!) point out where the bathroom is or help with disentangling clothing that is on back to front etc . Just says things like ` I wll just have to go away somewhere and I cant do this anymore`
    Luckily food is a great distraction and as weight loss is also a problem my OH can eat as much as possible. The one thing I find is lack of interest in much of anything I mention although with other people it is completely different SO IT MUST BE ME !
     
  14. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,973
    Suffolk
    It's not you, it's the disease, whatever your husband says. Empathy and logic are the first things to go, which was a shock in my very logical OH!
    Luckily he didn't mind carers, cleaners, or day care. I think because all our lives our families have had other people around doing those types of jobs. Having done national service, he's not bothered with other people around at intimate times. I didn't mind too much doing that with OH, but I could never had dealt with my father who, I swear, had dementia from a very young age! Fortunately I left home just in time and other people took that job on. But he was very decided and very vocal about what he wanted/ didn't want!
     
  15. Jennyc

    Jennyc Registered User

    Oct 3, 2011
    72
    Kent
    We are nearly four years into this now, husband diagnosed at 69, I was 62, just about to retire. I'm still angry and resentful. I cope, most of the time, and to all outward appearances I am calm, helpful and understanding. Every day I wake up angry and depressed. I can't offer any help, i don't know how to stop these feelings myself, I just wish every night that he won't wake up in the morning. He's very fit, just has Alzheimer's. (Just?) This could go on for another 15 or so years. We were not in a happy marriage, so I can't look back with affection. Tough. Maybe you will find a way. If you do, please tell me. Sorry.
     
  16. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,973
    Suffolk
    OH wasn't diagnosed until 73, now 82, but he'd had it for at least a couple of years before that. I'm now 66. It's only got really bad four/ five years ago. I had to give up work then, although work was getting difficult, health wise, for me.
    Yes, I feel hard done by. On the other hand, he had given me chances to achieve the unachievable ( in my eyes). I've noticed that my health has gone down with his, but whether this us coincidence or stress, I don't know.

    Although he's now in permanent care, I still don't feel well and am occasionally wracked with guilt. But that's life!
     
  17. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    333
    rct
    Hi!..your feelings are something we are familiar with.
    I care for my dad who has dementia with lewy bodies. ..have done for about 3 years with a diagnosis and a few before that due to lifethreatening episode that lasted 8 months..

    My dad has been my mums carer for donkeys years due to spine prob and copd. I suppose you could say i care for them both!

    Firstly can i say it sounds like you are doing a fantastic job. Id be only too happy if my mum could cope with doing half of what you do.
    It is ok to say when things get too much..and its not a discredit or disrespectful to your loved one at all...the fact that your expressing it is a good thing!

    My mum wont accept help other than mine...but i have made it clear that if my dads care needs change i will insist. ..
    My mum sees accepting help a being defeated and letting my dad down. Its not its doing the right thing...for him and her..

    You are totally within your rights to say that youre getting help for you...not your husband. I know its a play on words but ive seen people protest and then totally accept help!

    WIth my dad his thinking process is completely mixed up...and even if he said no..hed probably accept it in time...even if it started with a companion from age uk or red cross or crossroads meeting you for coffee or taking him out..it has to be completely staged to look like youre meeting a new friend...

    I always say to anyone that says oh yes your a carer...i was a carer for someone...if your not a carer for someone with dementia you can only understand the principal and never know the realities..

    Keep typing on tp...and get help for you..and remember you matter too!.
    If youre ill or worn out hes on his own...best wishes

    Sent from my GT-I9505 using Talking Point mobile app
     
  18. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    You wont be judged here friend. You are in an impossible situation and your life has been taken away from you. I am a carer for my mum and resented the life that i had lost because of her needs. She fought help at every step - day care, carers, respite etc etc. After 2 falls and nights on the floor she in now in a care home. She is actually happy, something i never expected.

    You need to stand up for YOUR rights. Carers, social services etc. Get some life back before your health suffers. We are with you. Sending you a hug and the strength to change things. He wont die just because you do something he does not like. You are actually in charge.
     
  19. May 1

    May 1 Registered User

    May 7, 2015
    9
    Surrey
    understand





    Reading this you could be me my OH is 67 just been diagnosed. I have big problems with his behaviour. I am bitter and angry all the time. I feel that my life is over. I see no future but a
    big black hole. I wish I had the answer. Xx

    big black hole. I wish I had the answer. Xx
     
  20. Jennyc

    Jennyc Registered User

    Oct 3, 2011
    72
    Kent
    To Unhappy15 and May1 - Trying to be positive

    I realize that what I wrote is incredibly negative. True for most of the time, but definitely negative. Anger and depression and despair are such harmful emotions, I know, so it is also very important to try and find some positives in the horrible situation we are all caught up in.

    Life is not really all unbearable, there are good things too, like family and friends, and beautiful days, and also in finding that we can do things we never thought we could. It is amazing what you can tackle when you find you have to. So sorry for putting such a bleak picture - it is bleak a lot of the time but I am making a big effort to see the positives - we all need to or we will go under. Good thoughts to all of you, and hopefully one day things will be easier.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.