1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. KerryH

    KerryH Registered User

    Nov 9, 2015
    20
    My mum is entering into the late phase. She knows who we are but often mixes up names. She is in living assisted accommodation but thinks she's in a home which is becoming a nuisance to the staff.

    We have carers in twice a day for medication and a district nurse to help administer insulin as she's a diabetic.

    She's in hospital at the moment with a foot infection caused by diabetes, it's one foot ulcer after another and the infection causes delusion which has been ongoing for the last 2 weeks. I.e. she thinks all the women in the ward are gay men!
    They can't seem to control the infection so I don't know what will happen. She's already had a toe amputated a few years ago.

    On a day to day basis, she can walk to the shops but forgets what she went for so goes backwards and forwards. She has meals on site as she cannot fend for herself and now couldn't make a sandwich. She can't remember what happened 5 minutes ago and on the whole she's now struggling with basic stuff. She also sleeps a lot and is depressed a lot of the time.

    She has a cat which is her life, she's been allowed to have the cat but it's not allowed out so we have a litter tray which now she can't clean up, so we have pet care come in to empty the tray etc.

    The nurses and carers think she should be in residential care but I'm holding off as long as I can. I've rung various carers but they don't seem to offer what is needed.

    My gut feeling is residential care but it's so hard.


    Sent from my iPad using Talking Point
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    Welcome to TP KerryH
    Your poor mum; really going through it, isn't she. Glad she is being looked after in the hospital.
    You are right, though, to be considering what comes next - go with your gut, would be my thought.
    The nurses and her carers are agreeing with you - and you write that your mum thought she already was in a care home, so she may find the move a relief, no longer having to try to keep up with things she isn't able to do safely any longer.
    I appreciate you have wanted to hold off as long as possible - of course you have. It does, though, appear from what you've written to be time to find a home that will offer her the full-time support she will need when she comes out of hospital. And I wonder if you won't feel some relief that the every day care is taken out of your hands, so that you can give her the caring only close family can provide.
    Keep posting to keep us all up to date.
     
  3. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    I'm so sorry to hear about your situation, Kerry.

    Please forgive me if I don't get the terms right (I'm in the States) but if your mum is in hospital, is there a social worker/case manager/discharge planner person you could meet with, and any assessments you could ask for, to get better information about what kind of care your mum needs and how best to provide it?

    I'm sorry to hear about the foot infection. Impaired healing is such a huge problem for diabetics and I'm sure the infection alone is stressful, never mind adding in dementia and delusions.

    Wishing you all the best.
     
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,921
    Suffolk
    If mum goes into a care home, she will be fed, clean and have company. He health will be monitored daily, as will her diabetes. She will get the correct food as well.
    No choice, IMHO.
     
  5. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,034
    Female
    Chester
    my mum is in sheltered extra care (assisted living) and they made it clear when she moved in that if the dementia gets to a point they feel they can't cope she would be asked to move into a CH. At the moment that is a long way off I think (I know things can change suddenly) but when she was sent to a CH after having pneumonia I was surprised how much she liked it and realised that actually it may be the right thing to move in sooner than I'd planned.

    If she is being a nuisance to the staff, and thinks she is in a home, then I suspect she would be happier in a home with the strong routine it offers and may sleep less and join in more if she is encouraged to join in activities. The nurses and carers have a lot of experience, and have seen these things before and so are worth listening to.

    I only visit my mum once a week, the carers see her every day, so they know her better than me on many things.
     
  6. KerryH

    KerryH Registered User

    Nov 9, 2015
    20
    Thanks for all your comments. I think the next stage is respite care and then she will be assessed by occupational therapy and then we can form a plan.

    It's so stressful and upsetting.


    Sent from my iPad using Talking Point
     
  7. Misstep

    Misstep Registered User

    Oct 7, 2015
    57
    South Wales
    Hard decision

    Fully sympathise. My Mum went into a home from hospital 2 weeks ago (with dehydration - that can't be prevented outside a home). She's a bit further on than yours and I tried everything to keep her at home. In the end, she suddenly deteriorated and got into difficulty. She hates being in the home and is past understanding why she's there. She's been angry and aggressive with me about it and still is, but starting to show some signs of at least resignation. The interesting thing is that she's actually unhappy about exactly the same things as she was unhappy about at home. She still says she never sees anyone and she's lonely! She's getting way more visitors than she ever had and the home is great.
    In honesty, I kept her out of the home much longer than I should have. She really needs to be there. If it helps, I remember when I was a teenager and was angry when she wouldn't let me go out somewhere. She told me very firmly that her first responsibility to me was my safety and welfare, not my happiness. When our parents reach the stage they have, the same thing applies. It's hard, because you want them to be happy, but sometimes that's not what they most need.
     
  8. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Your last sentence says it all. You know in your head what is right, but your heart is screaming No! Not yet! Listen to your head. You know it makes sense.

    Good luck and let us know how things go. xx
     
  9. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    773
    That is really appropriate. I had not thought of mum in that way .
     

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