Any advice welcome please

Discussion in 'I care for a person with dementia' started by number 9, Dec 13, 2016.

  1. number 9

    number 9 Registered User

    Aug 5, 2016
    I have never been on a forum before so this is a bit new to me. My mum was officially diagnosed with alzheimers 11 months ago. Took a long time to get a diagnosis. She started showing symptoms 3 years ago. I gave up work to be her full time carer last year. She's a very proud lady who has lived a truly remarkable life. She has always been a very private person who's courage, compassion & strength of character has has helped so many people over the years. She has sacrificed so much of herself to help others. She is the bravest and most caring person I have ever known. I have read people's stories on this forum but have never posted a comment. I felt that in doing so I would be betraying her. I feel like I am betraying her as I write this. She taught me to be strong & deal with whatever life threw at me. With her love & support I did just that. Yes I too am a very private person. But I am lost. I want to do the best for her & make her happy. I think I'm failing miserably. She is 90 years old but certainly doesn't look it. I hate saying this but I feel like I've lost my mum & She's been replaced by a stranger who looks exactly like her. My mum was always so immaculate but now she gets angry when I gently suggest she has a bath or changes her clothes. She says she doesn't have any other clothes. She has 2 wardrobes full. Every morning after making her breakfast & giving her medication I lay out clothes for her. Some days she doesn't want to eat anything & changes back into the clothes she wore the day before. If I leave the room for any reason she gets anxious & calls me. Even when I'm in the shower. If I go out I tell her where I'm going & how long for. I also leave a note to tell her I've gone to the shops & will be back in 30mins. She is just so frightened to be alone. It breaks my heart to see her so afraid. I have learnt to cope with the constant repeating of questions & the telling of old stories but sometimes I just want to cry because I hate what alzheimers is doing to her & to be honest I miss my mum. I feel guilty for being weak when I should be able to cope. I have siblings but none of them are remotely interested in her care. They are only interested in her will & on their very rare visits question her about it which upets her. After they've gone she says they are waiting for me to die. I comfort her the best I can. She then forgets about it & hails them as they came all this way to see her. 2 miles isn't that far. Some don't come at all & others once a year. They stay for a short while then nothing. Don't even call her.
    I'm trying to cope but I feel so alone. I gave up my career & my relationship to care for my mum. It was my decision. I simply could not leave her alone. She refuses help from anyone else. Won't have day carers & won't go to any social groups. She says she doesn't need anyone else she has me. SS have been round. They are arranging handrails & bath chairs etc but cannot do anymore as mum refuses anything they offer. She says please don't ever get married & leave me. She forgets how old I am. She sometimes mentions my soul mate & says you should have married him. Then it's back to please never leave me. I feel so guilty sometimes. I miss my life, my partner & my career. Then I think of what my poor mum is going through & I know I could never leave her. My siblings now ignore my calls & text mssgs. Only 1 keeps in touch. I hear from them about the others. They all talk about her will & how much they will get. It's heartbreaking. I can't believe they can be so cruel. I miss them as we all used to be so close but I hardly recognise them now. Sorry I didn't intend to ramble on for so long... would appreciate any advice.
  2. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Hi Number 9 and welcome to TP. I do hope that posting on here has helped a little.
    TBH you sound as if you might be nearing carer's breakdown. Nobody can keep on doing what you're doing, single-handedly 24/7. You're NOT being weak, you're simply a caring human being with a finite amount of energy. It's pants that your siblings aren't helping but there's nowt you can do about that apart from hope for karma.
    I think you desperately need respite - for you, before things get too much.
    And sometimes, the best way of caring is to let go and hand over the day to day care to others, who will wash her and dress her and do all the mundane but stressful stuff, so that you and your Mum can resume a better, less stressful relationship for however many years she has left. But this is about you as much as it is your Mum x
  3. Meecey

    Meecey Registered User

    Dec 11, 2016
    South Yorkshire
    Hello, I'm new to talking point. I just wanted to say I'm sure you're doing an amazing job looking after your mum. My dad has Alzheimer's and although he looks really well he's not the dad I knew growing up I don't have any advice but I think I understand some of what you're going through. X
  4. angecmc

    angecmc Registered User

    Dec 25, 2012
    Hi, you are not a weak person, you are kind and caring and have made so many personal sacrifices for your Mum. You need help, as we all do, nobody can do this alone. Some dementia sufferers sadly become very selfish, My Mums personality changed completely it was always "what about me?" She has been in a care home for three years now, before that my Dad and I cared for her for over 7 years, it was horrendous. I feel for you doing this alone. You do know you are entitled to an carers assessment from social services, don't you? I agree you sound like you need some respite care, tell your Mum if she wants you to carry on caring for her, she needs to accept help for you and you need to take a break now and then. It is not a sign of weakness to ask for help. Xx

  5. Bod

    Bod Registered User

    Aug 30, 2013
    Number 9
    From a practical point of view, when she removes any clothes you want to wash, remove them straight away, putting on the washing machine at 10pm if necessary!
    If it helps, think of her as a 90 year old toddler, treat her as you would a 3 yr old.
    Tell, don't ask. Keep any choice simple. Keep to your routine, she will fit in with you.
    You do, as others have already said, need a break. Use the SS contacts to arrange a Respite Break.
    You might be surprised, Mum might like being on holiday, in a care home.
    Sibling's not helping, at least they are not interfering!
    Should they complain about the cost of Respite, then they can come and look after mum for a week or two.
    You will not be able to care for her if you have a breakdown.
    Same should your mother need to enter a care home permanently, affecting their inheritance, then they can take her on. Tunes will very soon change!!

  6. number 9

    number 9 Registered User

    Aug 5, 2016
    Just want to say thank you so much for welcoming me into the forum & taking the time to read my ramblings.... I was nervous about joining a forum but your comments have already helped me so much. For the first time in ages I feel that I'm not alone. Thank you. It also makes me wish I could help others in the same situation. I popped out to the local shop to get some milk & when I got back my mum was crying & screaming that she couldn't see. She was so distraught. Turned out she had lost her glasses. After a 10 min search I found them under a chair. It was my fault... She was angry & upset because I went out & left her. Shes calmer now & hopefully will eat her dinner. Sorry I'm rambling again....
  7. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    That's why you can't carry on as you are, with no help or breaks. Popping out for 10mins is nothing to most people. But to a PWD (person with dementia) it must seem as if their world has disintegrated and then the (temporarily absent) carer gets the brunt of the fallout.

    (I couldn't leave my Mum at all because she was prone to falls and to becoming disorientated. Leaving a note would have served no purpose.)

    You need a break, you need a carer's assessment, in the short term you need help and in the medium term you need a plan!

    You're most certainly not alone now, there's a wealth of experience and advice to be found here on TP. Just ask/ramble/rant whenever x
  8. Clueless2

    Clueless2 Registered User

    May 14, 2015
    Number 9,
    Welcome, the practical advice you have already received is spot on. I too had very private parents, hiding my mothers dementia from even their closest and oldest friends, not airing their private concerns in public. The sense of betrayal was huge every time her condition was discussed with anyone outside the immediate family.

    You are exhausted and grieving; dementia has taken those elements of your mothers character that you valued and loved so much, leaving you with someone who looks like her but in almost every other aspect could not be more different (ceasing to care about appearance can be so upsetting).

    When you are in the middle of living their dementia with them, as you are, it can be impossible to see the wood for the trees. For your own health and sanity you need support. Now is not the time to dwell on what past promises may have been made about care homes, always being there for them etc because with the best will in the world, there will be some pwd who really need that level of care and support.

    i hope that you find the support that you need from her GP and the mental health team and this forum. Try not to dwell on those siblings, whilst their selfish avoidance and concerns are no support, at least they aren't actively frustrating you. Good luck.
  9. smartieplum

    smartieplum Registered User

    Jul 29, 2014
    Your love for your mum radiates from your post. Can totally empathise. My mum too has been replaced by a stranger. You need help. Take it.

    Sent from my SM-G920F using Talking Point mobile app
  10. marionq

    marionq Registered User

    Apr 24, 2013
    All good advice above. I rarely give my husband choices. I put his clothes every night in the laundry bag. I lay out a clean set for the morning. I wait for him to use the toilet then go in and switch on the shower and he is in before he knows what's happening. Just as someone else said I do exactly what I would have done with my small children but I chat away while doing so which distracts him from being managed.

    It is all a strain but arguments and resistance are a bigger strain so being decisive is the lesser of several evils. Keep your own health and well being at the forefront of your decisions.
  11. Peirre

    Peirre Registered User

    Aug 26, 2015
    Your not alone, it may feel as though your in a darkened corner searching for the light switch. But there are many of us here in the same dark corner and we can help each other with words of advice and comfort to lessen the feeling of isolation and despair.
  12. number 9

    number 9 Registered User

    Aug 5, 2016
    Thank you so much. I feel bad for rambling on but the support I have gained from everyone on here is indeed priceless. I never had any comprehension of Alzheimers. I've learnt a lot in the last year & indeed in the last few days from hearing about the incredible people on this forum. I'm so glad I signed up & thank you again to everyone on here for sharing their stories & such invaluable advice.
  13. number 9

    number 9 Registered User

    Aug 5, 2016
    Thank you so much. I have felt so alone. Knowing I'm not the only one in this dark place is such an incredible comfort. Your kind words have helped more than I can say. Isolation & despair you've nailed it. That's how it feels. To know there are other people feeling the same & willing to share their experiences to help others is indeed like finding a light switch.
  14. number 9

    number 9 Registered User

    Aug 5, 2016
    Thank you. Yes I'm learning that arguments are futile I don't want to argue but when my mum says that someone has been in the house stealing her jewellery & even her bin bags I try to reassure her that nobody would do that. She insists & gets very angry. Now I just try to change the subject. Sometimes it works... I'm trying to think about my own health & wellbeing but as I'm sure you know it's hard. I admit I'm upset about my siblings & I need to stop thinking about them but apart from being angry with them for not caring about our mum I really miss them. I've tried to call & text but no replies. I need to get a grip & accept that they aren't interested. Sorry I'm rambling again..... I hope you've had a good day today?

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