1. Pepsicola

    Pepsicola New member

    Jul 3, 2018
    4
    I am new to this Talking Point forum and as I don't know who else to talk to really without sounding like a proper whinger (which is of course I am doing!) I thought I'd give it a go.
    I am in my very early fifties and have given up my entire life (not by choice) it seems to look after my mum who has dementia. Don't get me wrong, she is a lovely person, never moans, never demands, understands that I have to spend time with my husband (she thinks he's my dad by the way), and just accepts the situation she's in with grace and dignity, so why do I feel so sad and resentful towards her? She can still get up, get dressed and her house is spotless and is very helpful when she comes to our house every night. There is still a lot she can do but feel I am constantly behind her as I feed her twice a day, see to all her appointments, take her everywhere otherwise she wouldn't go out, see to her finances etc, you know the sort of stuff, you're all there I expect. The biggest problem I have if I'm honest, I don't want to be wholly responsible for mum's life any more and the constant guilt I feel if I go out without her is overwhelming and when I don't see her one night in the week, I'm really happy, how awful is that! It's like having a small child again. I have spoken to Mum about this and she understands how difficult it is which makes the situation even worse sometimes. The saddest thing that I really struggle with is that she doesn't see me as a daughter anymore and introduces me as her cousin, she does however remember that she has two sons, so not sure really how that works. I have a loving husband who never moans about mum being round all the time, but we can't go on holiday and any events I have to plan round her being fed or looked after because I know mum would not manage for any length of time without intervention and she won't have carers in - usual thing. Her mental well being deteriorates quickly if I don't see her for a few hours due to not eating or drinking enough and it then takes a lot of effort each time to bring her back to some sort of normal. I just feel like everybody else can get on with their life with no problem and I have been somewhat lumbered with this situation. I love my mum but I feel trapped and with that feelings of resentment keep coming to the surface making me miserable and everybody then just avoids me until I pick myself up again. I don't think anybody who hasn't experienced caring for somebody really understands the massive emotional impact of dementia and I applaud all you people out there who are experiencing many more demands than I am. I thought I'd feel better for writing this, but I don't as it just makes me feel very ungrateful for what I can still do with my mum. Sorry Mum. Thank you for listening.
     
  2. Pepsicola

    Pepsicola New member

    Jul 3, 2018
    4
    You describe it very well, I feel for you totally. I do have authority with my mum which is difficult to deal with sometimes as she used to be such a strong, independent woman and now reduced to only going out with me (which we do every day), and in a nut shell, her whole existence it feels, depends on me going round every day and keeping her going in every sense, emotional, financial, etc. Look after yourself.
     
  3. HelenC23

    HelenC23 Registered User

    Dec 1, 2018
    22
    I understand, I have no help from my family and care for my mum and work full time

    Luckily I have carers for 2 hours a day whilst I am at work, which my mum pays for, and they are usually very good with my mum

    You sound like an amazing person and a strong woman

    It's hard and carers rarely seem to get thanked, I hope you find the support that you need xxxx
     
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,022
    N Ireland
    Hello @Pepsicola, welcome to the forum.

    I think it's important that you don't overstretch yourself to the detriment of your own life/family. Of course your mum won't have carers, only you. Most, if not all, people with dementia will think that way. There will invariably come a time where a persons needs outweigh their wants and change has to come.

    In the hope that it may help put things in perspective I'll add below some links to AS Factsheets that may be of relevance. Click the PDF lines for an easier read

    Carers: Looking after yourself (523)
    PDF printable version

    Assessment for care and support in England (418)
    PDF printable version

    https://www.alzheimers.org.uk/find-support-near-you

    Now that you have found us do keep posting for support.
     
  5. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,365
    Female
    South of the Border
    Totally with you on this - as so many of us are - we are losing ourselves whilst we look after and care about someone who is gradually slipping into another world.
    I could make a list of what I have lost through my partners dementia, and the way his family have abandoned me to it all - but, what the heck! it would only depress me.. and you ... it is what it is - and that is flaming well awful for us all.
    No wonder there is a need for Talking Point - long may the site continue, but I would love it if it ceased to be - and that would be if there was no more dementia !!!!
     
  6. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,278
    Nottinghamshire
    Hi @Pepsicola. It sounds as though you’ve been doing a wonderful job for your mum. But what about you?

    Dementia makes people unable to see anything but their own needs and wants and it’s very easy to get trapped into their lives. I know because you are describing my life with my dad before I took the decision to introduce carers to him. I had to do this by stealth. We tried day care but he didn’t like that, then a lunch club but that was turned down too, so eventually I asked him if he’d mind if a lady who needed a job came and helped him clean once a week and built things up from there. It was a case of finding out what he’d accept as he never thought he needed help (he didn’t while I was helping out all the time!).

    His carer (that’s what she was) started going 2hrs once a week (then twice a week) to clean the house and keep him company or occasionally take him out. Eventually her duties changed as dad’s needs increased and it was more work and less chat but I’m glad I started her early as it gave me a break on those days and dad enjoyed the company.
     
  7. Feistywoman

    Feistywoman Registered User

    Aug 11, 2018
    101
    Hi @Pepsicola sounds like you have an awful lot on your plate, you are doing so much for your Mum. It’s such a fine line to tread with providing care and having a bit of life for yourself....to which you are entitled and shouldn’t feel guilty about.
    I posted on here about an issue with my Mum and someone mentioned that I had to consider how far and what level of care I was prepared to provide. It was such a wake up call, it had never been a question that I’d considered. I need to work full time financially, I go to my mums 5 days a week, my son and husband kindly do the other 2, I do her cooking, help with chores (when allowed!) and take her to appointments. I came to the realisation that I’m almost at my limit.
    Perhaps it’s time for you to consider if you are actually exceeding your limit? If it’s possible it may be time to put a few other support mechanisms in place? You are entitled to have a life without guilt or understandable resentment.
     
  8. deepetshopboy

    deepetshopboy Registered User

    Jul 7, 2008
    155
    Your description of what your going through matches mine unfortunately dad will not accept help and is becoming difficult and is now getting lost .i feel exactly how you feel right now it’s horrible dark place to be with a huge anount of emotional stress .i cant work and virtually he is with me 24/7 apart from 2 /nights a week when i go home late or take him hime then come back i cant go shopping/do hobbies /go on holiday nothing anymore i love my dad but sometimes i look at him and feel like screaming your so selfish if i tell him and moan at him that i have no life cos he wont have carers he just says go on holiday im not telling you to look after me ok dad so ill lie on a beach whilst your at home not eating washing forgetting how to switch yout tv not taking nedication and worst still getting lost its the worst thing if ever had to experience in my whole life im still pretty young 41
     
  9. pixie2

    pixie2 Registered User

    Jul 21, 2018
    39
    I cared for my mam at home. She is now in a care home. I didn't know how shattered I was until one day I had reason to call ambulance. I sobbed out my whole story to paramedics seeing to mam and wept uncontrollably. They steered me in right direction of a care home. I am so guilty and sad but with hindsight was the best thing to do
     
  10. pixie2

    pixie2 Registered User

    Jul 21, 2018
    39
    I want my mam back as she used to be I love her and miss her dreadfully and oh god Xmas alone. I am weaping now, sorry for hijacking your post. I would love to be a child again and be hugged
     
  11. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    1,399
    Essex
    Dear Pepsicola,

    Keep that one night out and never feel guilty I've been through all this with dad and I had to put him in a home. The night out is your respite and you need to relax. You need to look after yourself as well. You are doing your best for your mum and I am continuing to do the best for dad. I felt as though I had dad's freedom in my hands when I put dad in the home I then started to relax a bit and went down with shingles. My friends and neighbours all said it was due to the stress and whilst I realise that I am having to tackle all the finances (as I cared for dad at home and he paid half of the bills) I couldn't have gone on as we were. Dad is now well settled and I am attempting to rebuild my career and life.

    Your mum would be very proud of you and she obviously loves you very much

    MaNaAk
     

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