I can't be out of sight

Discussion in 'I have a partner with dementia' started by Trisha4, Oct 21, 2015.

  1. Trisha4

    Trisha4 Registered User

    Jan 16, 2014
    2,440
    Yorkshire
    I am worried about the resentment I feel at times about my total lack of freedom. My husband is very anxious and unhappy if I am out of his sight. Consequently I have stopped all my activities. I used to go to keep fit, folk dancing, Language classes. I am a governor of a mental health trust and I was an active member but I haven't attended a meeting for months.
    I feel mean when I feel resentful as we are able to go out together and it could be (and probably will be) worse, but I just feel like a prisoner at times. I'm frightened I'm losing me.


    Sent from my iPad using Talking Point
     
  2. disi

    disi Registered User

    Hello Trisha, have just read your post, when my husband was at home over the last few months before going into a permanent CH was just like yours. He would even stand right next to me when I was cooking etc. So I know what you are going through. Can your husband go to a day centre, this would give you some space. Do you have carers come that could give you a break. I can't really offer much advice except send you a huge hug and hope you can sort something out. You must have some ME time, it is so important. Lots of love xxxxxxx
     
  3. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,562
    Female
    England
    My life was the same Trisha for the last three years my husband was at home. I did loose myself. I stopped being a Mum, a grandmother, great grandmother and friend. My husband was constantly a foot behind me. I had to sprint to the loo to make sure I got through the door before he did too. he went with me everywhere, dentist, hospital, even my monthly manicure.

    He was given a place at a centre 20 miles from where we live and I had to take him there. So in a day I did a trip of 80 miles and I am ashamed to say I broke the speed limit most days to get there quicker and to get back home to have some time to myself.

    You go through all these horrors and accept them, it is not until it stops you wonder how the heck you got through it.

    Sorry I can't offer any advice, I never found a solution for this particular problem but hopefully you can find a little time for yourself.

    Take care. x
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,908
    Female
    Scotland
    Trisha you are where I was six months ago. I was down, bored, resentful on the verge of depression. I couldn't leave John for a moment or he disappeared resulting in police searches and so much stress I was in despair.

    Light at the end of this particular tunnel came from a combination of increased medication (Trazadone) and three days at day centre ( two separate centres). All the issues are still there but I am able to cope and feel like I am my own person again. Yes the three days fly in and the four days feel like a fortnight BUT I can do it. John seems happier and more settled.

    You must have time to yourself and mostly that begins with an assessment from SS where you insist that you will crack without it. In my case there were reports to support that but your own demeanour and insistence is vital when talking to SS.

    Good luck.
     
  5. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Trisha have you tried Crossroads? Don't know if you got them in your area ? They are a Charity and I get 3 hours a week ( on a Monday ) where they either take my John out or sit with him. I know it's not a lot but I love my 3 hours me time . Hugs to you xxxx


    Sent from my iPhone using Talking Point
     
  6. pony-mad

    pony-mad Registered User

    May 23, 2014
    1,073
    Mid-Wales
    Trisha, I know exactly how you are feeling! A year ago I literally felt like I was drowning!!! For 3 years he hadn't left my side and I too had put my life on hold, retired from a job I loved and left committees and social activities. I also felt guilt as he was amenable and would go anywhere with me! But I realise now that I was depressed and was in danger of descending deeper. I had a carers assessment and daycare was suggested, I tried taking him but each time he became extremely upset and tbh I really didn't think it was for him. He is very active, still runs and walks for miles so sitting around doing activities was torturous for him, especially as his language is virtually non-existent.
    So now I employ 2 carers, it's taken a long time to find the right ones; he goes running, walking, swimming shopping gardening while I have returned to some activities; Pilates long rides on my horse and am contemplating volunteering at my local primary school! I'm not drowning any more. We are both happier. I hope you can find your life-jacket! Best wishes x


    Sent from my iPhone using Talking Point
     
  7. Trisha4

    Trisha4 Registered User

    Jan 16, 2014
    2,440
    Yorkshire
    Thank you all for your understanding and supportive comments. I have asked for a Social Services assessment for both of us. It's a long time since we had the first one when I said we didn't need any outside help, which we didn't at that stage.
    It's good to get encouragement from folk who have had the same experience. It's so easy to feel selfish. I will work on it.


    Sent from my iPad using Talking Point
     
  8. Casbow

    Casbow Registered User

    Sep 3, 2013
    997
    Colchester
    Good luck Trisha. I can't move either. It drives me mad. But so far the two day care places we have tried said they couldn,t keep him as he was to disruptive. I don't have an answer, so just keep going somehow. I have nearly broken 2 times but managed to recover. I still love him very much, and sometimes we have a moment of laughter just like we used to. I live in hope for a daycare place for him. I have just made an appointment to get my eyes tested and have had to ask for him to be with me ,if there is enough room. I can,t leave him outside. He will be gone to look for me within 2 minutes. xxx
     
  9. marionq

    marionq Registered User

    Apr 24, 2013
    5,908
    Female
    Scotland
    Casbow would a Befriender help to give you a few hours break? The SS should be able to refer you eg to the Alz Soc or whoever provides in your area.

    John's day centre wouldn't give us an extra day for some months after he slipped out and the police had to search for him. This was resolved by hiding his hat and coat and also when his Trazadone was increased. He now has three days and the difference for me is tremendous and he is more settled. He is exhausted on these days as they keep them occupied as well as going out on trips.

    Get back to the SS and ask them to help.
     
  10. minstrel6

    minstrel6 Registered User

    Nov 25, 2015
    3
    isle of wight
    I know how you feel.I am followed about the house and called when out of sight.Like you,I feel my identity is being eroded.Yes, it'slike being in prison.
    Sent by Minstrel6.
     
  11. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello Trisha4, only just read your post, l have had so much freedom since September, when my hubby went into a CH, the relief is unbelieveable, l struggled to look after him for 2yrs, could not go anywhere without him with me, had to give up bowling, holidays, lunches out with girlfriends, the family suffered so much. I visit CH everyday for 4hrs, l still care and love him very much, life for me is so much better.☺
     
  12. theoh

    theoh Registered User

    Nov 11, 2015
    24
    Hi Trisha4
    thanks for sharing and helping me as I have the same issue. I am at work or at home with my OH, I cannot be anywhere else. I cannt go for a wee without him shouting for me. I can not just be around the house I have to be sitting next to him, he wants to go to bed earlier and earlier I have to do the same, then I get into trouble for reading in bed (it being 8pm). we have a daytime carer now but it has to be me other than when I have to be at work. Managed to get a friend to sit with him to go for a Christmas dinner with some girlfriends - first time out in 6 months - I have lost the art of small talk and he phoned me every 15 minutes.

    I know it sounds mean but oh for some me time! cannt even do the Christmas shopping at the moment as can not get out to do it - he is not very mobile and needs the loo all the time so cannot take him with me. End up having to take time out of my work as I have my curfew. The stress gets to unbelievable levels as I have a stressful job as well. I get short tempered with others around me as I have to have patience to the nth degree with my oh.

    not much help to you Trisha but just to say I can share your situation and understand all you are saying.
     
  13. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,442
    Kent
    Before Mum died suddenly from a massive stroke, she said life had become dull because she couldn't or wouldn't leave Dad for any length of time or let others help. The alzheimers home support worker said, in the 10 months after she died when I lived with Dad and I could totally see what Mum meant, that generally the sufferer is reasonably well looked after it's the carer who it takes it's toll on. Even in the 10 months having dropped my own life which I didn't hesitate to do in the circumstances, we found mum when we gathered for her 80th birthday lunch, dad couldn't get help from the night before when she died because of his dementia (dad has now been in care for 16 mths) it took it's toll on me even though I would do exactly the same again to help Dad. I don't like to think of this but who knows, mum was otherwise healthy, so the stroke came completely out of the blue, maybe the caring had taken it's toll to catastrophic effect, I know she got frustrated at how her life had become and getting to grips with how dad had changed, but would never have changed anything in her care, they had been married for 60 years. I know she had plans to pick up her life again if Dad had gone first (he had triple heart bypass over 20 years ago) so we were realistic that this may have happened. The point I am trying to make, from my experience with Mum, don't let all of your life and interests go, you just don't know what's round the corner, don't let your life become dull like Mum's had.
     
  14. 19maggie

    19maggie Registered User

    Jul 18, 2014
    3
    Exactly my predicament"

    Hello,
    I am in exactly the same predicament. Even if I nip to the loo he is standing outside the door asking where I am! I love him dearly but crave a little time on my own unfortunately we don't seem to have anywhere that he wants to go he loved the outdoors and our day centres concentrate on sitting playing games ect - not one of his things! We walk a lot but he gets very tired and if we go shopping he wanders off so there is no respite. We are going to the hospital this week to see if they can recommend something to settle him at nights to stop his wandering so please keep your fingers crossed for me. I get loads of comfort from reading other peoples struggles it shows you are not in your own. Maggie
     
  15. Casbow

    Casbow Registered User

    Sep 3, 2013
    997
    Colchester
    19maggie

    My situation is the same as all the others and I'm afraid that I don't know the answer.I have crossroads 2 hours a week which is a blessing but would prefer 4 hours as I could make it a much better break. But after 8 months he still paces ands frets while I'm out and I am not happy to make him unhappy. Tried two Day care places and neither could keep him. Said he was too disruptive. So just try to keep going as we are. I miss our life as it was. Its a pretty boring much all of the time. I think of all we might have been doing in retirement and its never going to happen. My husband was 65 when he was diagnosed. So the retirement dreams didn't happen. Never mind. I count my blessings and think of those much worse off. It does help. Love to all.x
     

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.