am I doing it all wrong?

Discussion in 'I care for a person with dementia' started by Julia B, Oct 15, 2015.

  1. Julia B

    Julia B Registered User

    Apr 13, 2015
    MiL lives with us, has been diagnosed for a few years, lived with us since Feb ( we converted the garage into a bedroom and en suite and built a lounge, had the garden landscaped so it was elderly friendly ), I work full time, her son ( my other half ) is her carer. She has depression too, 2nd week into tablets to help that, finally got a CPN round , she sundowns every night, refuses to eat but does do when I take dinner in. Her short term memory is a few minutes, she won't go out, and if she visits her sister ( same illness, in a care home) MiL is hard work for the next few days " I wish I was dead" or "i was never like this before I came here" or "I would be better in a home I'm a burden I don't see anyone all day " - OH is with her all day until she goes to bed, we've been out once since Feb, her other son sat with her for 5 hours... I'm drained, she's ill, I know that, but she won't wash, won't change her clothes, moves my things around, hides things, is a danger to herself. Nobody helps, which is what we expected, but its so oppressive. I keep her stocked with lemonade ( she needs reminding to drink) and biscuits, fruit and chocolates...her meals are fresh, served quietly and on her tray etc in this lovely room we had built for her ( she won't sit with us as she loses the thread of family conversation at the kitchen table ). We are getting married in 29 days, no honeymoon, nobody can care for her.. when she is low she wants to go into a home...I love her but she's exhausting, unpleasant at times, almost aggressive. I follow all the hints and tips on here, you guys are amazing btw, but is it time for respite? How do I even know what stage she is at? Any ideas, please, I'm worried we've done it all wrong, she always said to her sons please don't put me in a TP'ers , please...sorry , rant over..
  2. balloo

    balloo Registered User

    Sep 21, 2013
    my mil has vascular d she has lived with us for almost 3 years she cannot do personal care any more so that is left to me. she has her own room upstairs with bed tv chair but cannot work tv .age uk do sitting service if you full time carer its 9 hrs a month but occasional you need more and its £20/ hr .respite I all well and good but where I live you cannot book more than 2 weeks in advance and its £1000 a week and minimum of 2 weeks .so not bothered .we took her on holiday to Greece last year and she loved it. not now as she would fined it stressful and so would we .if I am luck I go away for 1 night while my husband takes over have done this 2 times this year he has managed 6 days so far including valuntines day ( day my mother died).I don't know what to say to help all I know is I am about to burn out and explode but not sure what to do myself. take care.
  3. Beate

    Beate Registered User

    May 21, 2014
    It doesn't matter what stage she is at, it's clearly more than time for respite or even a care home. I am quite concerned that you say that nobody helps. Have you spoken to social services? They have a duty of care towards a vulnerable adult at risk which your MIL clearly is, plus you and hubby have by law the right to a carers assessment to make your life easier. You need to be able to describe the problems, which you have clearly done in your post and you need to have an idea what type of support would help. Day care, sitting service, carers in the house, respite? Give them a call this morning. Say it's urgent. Remind them of their duty of care.
  4. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    Firstly welcome to TP. Secondly you sound exhausted. Thirdly, congratulations on your forth coming marriage, which I think is time to take stock of the situation you find yourself in, which I know you have done but start thinking of help.

    You need to contact the council to arrange an assessment for both you and her. She maybe able to go to a day care centre, as well as have someone in to give your partner a break. But right now I would ask them if respite in a home could be arranged ASAP with your wedding coming up even just for a few days together, even if at home but some quality time together. At least then you would know how she got in a care home environment, but I do know it does take time to settle when she first goes in.

    I presume when you get married you are having guests at your wedding, maybe the family members who attend should be asked to support you more than they are. Even if it's half a day a week.

    Have you applied for Attendance allowance for her as this would help to pay for some carers to help your partner. Your partner needs some quality time to themselves even just going out for a coffee or joining a group, because if not when anything does happen in respect of MIL they won't have any outside friends or interests to help him through the transition.

    I know your MIL says she doesn't want to go into a home I think 99% of the residents in the homes have insisted on it to their families, but you have to live a life too and she may improve with routine, stability and stimulation as well as company in a similar situation. You aren't super human, you can only try your best without harming your own health and life.

    Hope this has helped in some way, keep us posted. Don't forget to let us see a wedding photo too!
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi Julia B
    Wrong? - not at all. You and your husband-to-be (Congratulations :)) have made heroic efforts to give your MiL a good quality of life.

    I agree with Beate and Mrsbusy, you have a right to more support and you need to look into that now.

    If your MiL has funds, there is nothing to stop you organising respite yourselves - though it can be tricky to find a place for the time you need.

    I'm just going to quote from her:
    Maybe she is, in her way, giving you permission to consider a care home for her.?
  6. Bod

    Bod Registered User

    Aug 30, 2013
    Despite all that you have done for her, and very well done for doing all that, the time might be now that she needs more care than you can provide.

    Going into a home was the best thing that happened to my father, 4 years down the line, he's happy, well fed, clean, and enjoying life far more than he ever did living at home.

    It's hard, putting them in, but the rewards, are worth it.

  7. Tray2283

    Tray2283 Registered User

    Oct 5, 2015
    Hi there , it sounds to me like you are doing your very best to support your MIL. On the other hand you & your husband to be(congratulations) deserve some quality time away, that way you will come back feeling rested& ready to give the care for your MIL. I carried on for 3 years, my relationship suffered& my health& I found myself resenting my mum.
    I didn't find respite helpful as the home wasn't right for mum, but if you look around there are some very good homes that can offer a good service& your MIL might enjoy it.
    I now have Carers helping& the difference is amazing, I feel rested physically & mentally.

    Sent from my iPhone using Talking Point
  8. Julia B

    Julia B Registered User

    Apr 13, 2015
    Thank you, last night was a good one, no disruption to the peacefulness for her so she was happy, settled, ate like a horse and laughed at my antics with the dog, its nights like that I know we're doing our best, but heartfelt thanks for your kind, wise words
  9. Julia B

    Julia B Registered User

    Apr 13, 2015
    thank you for the congrats and I'm so glad its better for you now, thank you for replying I'm really grateful, take care
  10. Julia B

    Julia B Registered User

    Apr 13, 2015
    Thanks MrsBusy, I'll take your wise words and kind wishes, thank you so much for taking the time
  11. chelsea girl

    chelsea girl Registered User

    Jan 25, 2015
    Am i doing it wrong

    Hi, my mum is entitled to 5 weeks respite a year, so roughly every 2 1/2 months. We know when its getting to that time cos everything is hard work, we are so tired i cant think straight sometimes. I would definately recommend respite, the rest and losing that responsibility is like a weight lifting from our shoulders. Look into it, it helps give u a quality of life that we all deserve. Good luck with the wedding
  12. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    You are doing great, but you need help. My mum lives with us and some weeks are better than others - remember you aren't superwoman. I have 1 carer in twice a day to give my mum breakfast and lunch whilst we're all in work. I pay for it via Attendance Allowance - it was arranged by my mum's social worker after I had insisted on having a carers assessment.

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