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.

  1. AnnieHunt

    AnnieHunt Registered User

    Jan 11, 2016
    I don't know whether to be mad or sad weak or strong. My mother's dementia is progressing right before my eyes and I don't know how to feel. She lives with me I give her total care. She is still mobile she can still eat but here lately she has developed ticks where the muscles in her face twitch and when she tries to talk her mouth twist to the side. She can't bathe or dress herself or do any of the daily hygiene routines, I do all of that. Her nose constantly runs thick mucus and she coughs while eating a lot and her chest always seems to have lots of phlegm in it. I know that it is a sure sign that she could develop pneumonia but I check her everyday to see if she has a fever. She is holding her bowels so I have to give her laxatives so it will come out on its own. She urinates on my carpet if I don't catch her to take her to the potty in time. She fights me when I'm trying to help her. Some days she is nice and some days she is mean to me. My mom thinks something is wrong with her when she poops so she holds it in and if I don't give her a laxative she gets really constipated and when she goes she cries because she doesn't know what is coming out of her bottom she thinks because she is pooping that she is sick. It has been very hard caring for her because she is my mother. I've always taken care of other people with dementia in my career but it's different it's personal feelings versus the type of care and love provided to strangers. I was sympathetic but stronger than I am with my mom. Some days I cry when I think about the old mom and to see her now is devastating. I don't know how I'm going to handle her passing. I'm trying to be strong now. I get angry because I ask WHY MY MOTHER! WHY MY FAMILY! All the training from my job could have never prepared me for this.
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Welcome to TP :)

    I think the why my mum, why my family is something that lots of us think.
    Do you think the time has come to get some help with your mum?
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello AnnieHunt

    I`m not surprised you have mixed emotions witnessing your mother in such distress. It is the first time I`ve heard of a person with dementia terrified they are seriously ill every time they have a bowel movement. What a nightmare.

    I have read on TP how many people experienced in caring for a person with dementia find it a very different situation when they are caring for their own. I wonder how many people you have advised to accept outside help. Perhaps now`s the time for you to do this too.
  4. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Hi, Annie, and welcome to TP.

    I am so sorry to hear about the situation with your mother. You are definitely not the first person here who has experience as a carer/nurse/social worker/health care provider in their professional life, who finds it a whole different story when caring for a family member.

    Just remember that you do have a lot of good knowledge and experience, even if you don't always feel that way.

    Clearly you are tired and overwhelmed. You know, as a professional, that's it is not reasonable to expect one person to provide hands-on care 24/7 with no assistance and no relief, indefinitely. Please get some help for yourself and your mother. If you don't take care of yourself you will be of no use to anyone, especially your mother.

    Best wishes to you.
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    Hi there
    You've been doing an amazing job but sometimes it is good to get some outside help - you might have said that to others during your career? Sometimes we all need some extra help just to maintain our own strength and also to help us see things differently.

    You won't be letting either mum or yourself down you will just be using your expertise in a different way - to make sure she gets the best help you can. You are in such a good position to be able to monitor the care from others closely and make sure it is the very best while giving yourself a break to recharge your batteries.

    It is hard but it is worth thinking about xx

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