1. Avis

    Avis Registered User

    Nov 2, 2019
    I know that almost everyone on this forum is in the same boat so I feel a bit silly posting that I am so tired that I am almost over this caring business. I have cleaned up the toilet four times today, rescued my OH from falling over several times and responded to countless calls of "where are you" when I am in plain sight or at the toilet or hanging out the washing. I cannot move out of his sight. After 7 years or a steadily declining situation I am feeling quite down tonight. Glad to have this forum to give vent to my feelings as I know that many of you truly understand what it is like.
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I’m sorry things are so bad for you and there’s no way should feel silly posting this. I’m glad you’re finding the forum a supportive place to come to when you feel down.

    Do you have any support for your OH? No wonder you’re feeling down.
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I'm not surprised you`re feeling low @Avis. You sound exhausted.

    When caring at this stage there seems to be no space to breathe. It`s the constant reassurance needed by so many people with dementia on top of the physical demands.

    I remember my husband thinking I`d gone out and left him when I was only in the kitchen or, as you said Avis, hanging out the washing. I knew it was his fear of being alone and his inability to understand what was completely under his nose, never mind what was in another room.

    I do hope you get some respite. If not please make enquiries about help available for you.

  4. Avis

    Avis Registered User

    Nov 2, 2019
    We have a physio once per week and a gardener and house cleaner once per fortnight for an hour. With MSA the dementia seems to strike at any old time but he is much worse in the afternoon and evening when I am at my most tired. It is not good timing.
  5. Avis

    Avis Registered User

    Nov 2, 2019
    My OH is steadfastly refusing respite. Everyone including our GP and his case manager have suggested it but unless we carry him out he won't go. I need to have both knees replaced so he will have to go in then. He says he can look after himself but there is no way he could even make himself a cup of tea. He wanted sugar in his tea yesterday - he hasn't had it for 40 years or more so when I got it for him he wouldn't drink it because it was too sweet and tasted funny. It is like having a toddler again when you can't shower or go to the toilet without them looking for you.
  6. Sunshine2*

    Sunshine2* Registered User

    May 16, 2019
    Hello Avis, I understand everything you are going through and just remember you are doing a wonderful job caring for your husband. However, a few hours a week respite would be really beneficial for you both. Is there anywhere you can arrange to take him and tell him you are going out?
    My husband also requires 24/7 attention and if I go outside to do a spot of sweeping leaves/gardening, he starts shouting and banging on the door. He reckoned there were people from school in the house the other morning who were after him and asked me to stay in the room. I checked the house to calm him down. In the past he’s accused me of having an affair! I was taking elderly relatives for hospital appointments! I realise it’s the dementia, but it is very hard and lonely when you are a sole 24/7 carer, as I am.
    I really hope things improve for you. Continue to post on here. It really helps me.
  7. Tea and. toast

    Tea and. toast Registered User

    May 8, 2019
    Hello Avis I feel for you. i look after my Dad and have similar issues. I hope you get some respite soon. Sometimes I fall asleep on the settee early evening for an hour or so. I need to get my sleep situation sorted out. However I have to sort Dad for bed which can take time so I never get to bed early. I am all to pot tonight. Must go to bed as up early for morning carers. Take care.
  8. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    Crumbs! 7 years of this! I’ve only had 2 really grotty years, and I’m feeling I can’t go on! Every day is too many for me! I take my hat off to you.
  9. Avis

    Avis Registered User

    Nov 2, 2019
    Perhaps your person is harder to care for than mine. There are many days when I feel I can't go on but I do - and the years roll on. Everyone is different. I spoke to a woman today who's husband thought she was stealing from him and became violent so she had to put him into care. At least mine is not physically aggressive so far.
  10. Gillywilly

    Gillywilly Registered User

    Sep 21, 2018
    Hi have you though about getting carers in it sounds like you need a help after seven years you have done wonderful my mother only survived four years and ten months. I think you need a break I know it’s okay me saying take a break we never took a break until mum was dying and had nursed her for eight months. You are on overload think about getting social work in and some care in place. I understand what you are going through my father was totally against care until push came to shove and it was a case of she either went to a home from hospital or got carers at home oh course he chose the later good luck
  11. shuserpas

    shuserpas New member

    Dec 4, 2019
    These are situations I recognise for my stepfather, who cares for Mum. I work and have arthritis but I bail him out 2 days per week - usually weekend when I just have to leave my own family. They have a cleaner and now she helps me with mums personal care. Mum will not have carers and flatly refuses to leave her bedroom never mind the house so any respite for my stepfather appears to be out.There are frequent crises and GPs and district nurses are shocked at the mental state of both of us, but she will not go. I am assuming that he will just collapse, but then what?
  12. wonderfulmum

    wonderfulmum Registered User

    Aug 20, 2015
    Me too, it feels longer and each day is draining that any time I have I just want to sleep. Love going out once in a while to meet friends but my world crashes back down to earth as soon as I'm through the door.
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I read your posts & feel so sad for you, life shouldn’t be like this. Loved ones become strangers & childlike. Cruel disease
    Hoping your days become easier soon

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