1. annielou

    annielou Registered User

    Sep 27, 2019
    Its an awful thing to say but I feel like I'm an inmate in mums prison lately.
    A while ago mum said her home felt like a prison because she's stuck in it all the time with nothing to do and nobody to talk to.
    At the time I felt sorry for her but as I was seeing her most days and she was coming to my house a few times a week and she had been there most of the day before I thought she was either confused or exaggerating a bit because she was fed up.
    As mums memory seems to have got worse over the last few weeks and she gets confused how much time has passed and forgets what we've done, where we've been and how long I've been with her I thought thats probably is what it feels like to mum. It probably does feel like a prison.

    And as I've been staying with her since last Tuesday (apart from 2 nights last week when my sister stayed) I also feel like I'm in a prison.

    We're stuck together 24 hours a day, apart from when she's asleep, and mum wants to know where I am the whole time. Even when mums in bed she calls out for me or gets up and comes to find me to ask me if things are locked up, has she done this, and during the night asks where am I or where is she and I won't leave her on her own will I.
    During the day she wants to be with me all the time and doesn't like me doing anything else that might have even part of my attention, if I'm texting or looking on my phone she gets annoyed. If I'm out of the room doing a job she constantly calls out or comes looking to see what I'm doing.
    When hubby comes to visit if we talk she wants to know what we're saying and when I go to show him out she often moans about me taking too long.
    I went in another room the other day when my sister rang to talk about arranging social care assessment and mum kept coming in telling me to hurry up because I was ignoring her.
    At times I get so frustrated and feel trapped especially when she's annoyed at me over 'ignoring' her or 'getting on at her' which is usually when she asks me how to do something and gets annoyed when I tell her, or I Ask her if or why she did something, or she says one thing, I do it, she has forgotten she said that and starts telling me off for whatever I have done and doesn't believe me when I tell her it was her idea.
    And I also find it hard as she is constantly asking questions about what she's done, how bad her memory is, why I'm staying, why no one is helping her and no matter what I say or do she just won't stop and gets in a loop for hours.
    It's awful seeing her getting upset and scared by what she has done or what she cant remember or what might happen and on a selfish note it's awful for me going through it over and over again reminding myself how sad things are and knowing that no matter what she says now, whether agreeing to try this or that she will have forgotten it soon and we'll keep having these same conversations that get us nowhere except upset.
    Nothing I try can take her mind off these questions once she starts on the loop and there's nowhere I can go to have a minute where she won't follow me except the bathroom and even then as it's a small bungalow she just talks through the door at me if I'm gone more than a minute.
    I'm constantly watching her or listening out for to check she's ok or needs help and not doing something odd. Every day I'm in the shower (the longest time I'm not with mum apart from bed time) I come out to find mum has done something with my stuff like most days she throws my glass of water away and washes up glass. Moves things like magazines, sweets, and this morning threw the new pack of brioche away I'd bought for my breakfasts. Or put the washer on even though we decided not to because its raining and the airers full. Or thrown the loaf away that still in date and were going to use at lunch.

    I know its selfish to feel so trapped and frustrated and annoyed at things that mum isn't doing on purpose, I know it must be worse for mum. She never asked for this and as she says, she's not enjoying it and doesn't want it, but I can't stop myself feeling like we're now both trapped and controlled by this.
    I feel like I'm being sorry for myself and morngy feelingvlike this.
    Does anyone else feel like this?
  2. Lirene

    Lirene Registered User

    Sep 15, 2019
    Yes, I’m so sorry to say it happens to the majority of us. We have no life of our own it’s a living nightmare.
    I did nothing and just let it carry on and gave up everything and seeing everyone and my world just revolved around my husband. Looking after his every need and trying all the time to keep the peace - literally walking on eggshells and not rocking the boat for fear of how he would respond if I did. All in all, I have to admit I ended up being frightened of him.
    You need to approach the professionals, write to your mothers GP or make an appointment. Keep a diary of everything that happens if not, you will forget. You need help and lots of it!
    I did nothing, and regret the years I have lost. My love, thoughts and prayers xx
  3. Lirene

    Lirene Registered User

    Sep 15, 2019
    Nowadays they seem to call it coercive behaviour as was pointed out to me - I just called it ‘keeping the peace’ and many others are doing the same xx
  4. Crafts101

    Crafts101 Registered User

    Aug 22, 2019
    It's so hard to remember it is the disease that is doing it and not your Mum. It's so hard to see the person who had so much empathy and caring for you, and others, no longer be there, even though they are standing in front of you. It's so hard to not loose your temper when you have been in 'the loop' for what seems like hours, with no end in sight. It's so hard to find any space or moment to yourself, if it is not behind a locked bathroom door. It's so hard to realise you are loosing your life, bit by bit, to this disease too and you are not the one with the diagnosis. It's so hard to try and remember what 'normal' life feels like as you are now in an alternate reality most of the time. Its so hard to get others to understand any of this if they have never experienced it.

    Thank heaven for TP and all of us out there who can connect.

    You are not alone.
  5. annielou

    annielou Registered User

    Sep 27, 2019
    Thanks @Lirene & @Crafts101 it helps to know I'm not alone in my feelings, although Its sad to hear.
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I do think it`s much more difficult to abandon what was your life for a sick parent.

    Those of us caring for partners/spouses are continuing a life already being lived but give up on their plans, hopes and dreams.

    Those caring for parents are juggling lives under different roofs.
  7. TNJJ

    TNJJ Registered User

    May 7, 2019
    Well said Canary! The only bonus with dad being immobile is he cannot follow me .But I still get the questioning”Where are you??”
  8. Pete1

    Pete1 Registered User

    Jul 16, 2019
    Good Morning @annielou, the world certainly shrinks as the dementia becomes all consuming.As it strips away the person that once cared for you there is a whole gamut of emotions that you go through, guilt/sadness/anger/frustration/helplessness - and often it all feels impossible in the eye of the storm. I think what is clear from your post @annielou is that you do need help - this isn't a sustainable situation for you (or your family), it will drive you into the ground. I know you are trying to get some home care support, so I wish you well with that. Take care of yourself and keep posting.
  9. Blondee

    Blondee Registered User

    May 12, 2018
    Oh @annielou I can identify so much with everything you say. I looked after my mum until I could no longer continue and completely broke down. She had to go into a care home and died six months later - at 92. But she was generally happy there. The first thing you need to do is get a diagnosis and it sounds as if you are already on that. Sad to say that’s no magic wand. I remember when we got mum’s diagnosis. She was aged 90 and the first thing the doctor said to me before even addressing the reason we were at the clinic was “so I guess you’ll be retiring soon”. In other words you’ll be able to devote your life to looking after her. You’re right, no one asks you if you are willing or able to do this but it’s your mum so of course you do. But there is help out there and there comes a time that professionals are needed. You need to engage with Social Services as soon as possible. When I could no longer continue, mum’s social worker was great. Immediately agreed that I was no longer able to give her the care she needed and that residential care was the answer. And someone else saying that is what you need. It’s too difficult on your own. But you need to tell it like it is. Don’t sugar coat it or play it down which will be your natural inclination. If someone has to be with your mum 24 hours a day it sounds as if things have gone past what you can provide. Even if you don’t feel she’s reached that stage yet, if you have social services engaged then it makes it easier when and if the time does come. Keep engaging here. There’s so much support for you both practically and emotionally on here.
  10. LadyA

    LadyA Registered User

    Oct 19, 2009
    I remember when my husband was still at home telling people that I couldn't go to the toilet by myself, and they would smile indulgently and say "aw, bless him."! They thought I was just using a figure of speech. Sort of exaggerating for effect. I would have to explain that I literally couldn't go to the loo by myself; I had to bring him in with me. Otherwise, he would be banging on the door non stop, crying "where are you? I need to see you!"
    The isolation, that feeling of being locked in is something that can get right in to us. Now, four years after his death, I have a very busy life. I take care of my mum (but don't live with her!), and I help my daughter & her family out a lot with very young children. I work part time. I make an effort to see friends occasionally. But that sense of isolation has stayed with me. I do all these things, but I find myself longing to just stay home by myself. I certainly wouldn't have done anything differently, and I don't resent or regret caring for my husband as long as I could. But, those long years did change me.

    You must try and arrange more help. You have your own family to think about, and, tough as it is to think about, your mum will not always need you, and you will have to readjust to your own life. It will be much easier to do that, if caring has not totally consumed you.
  11. Buggs

    Buggs New member

    Oct 26, 2019
    I understand what your up against, since mum passed away I've become dads carer. Its hard by yourself, you need help. What will happen if your ill? It's not selfish to think about you, get family involved more then you maybe able to enjoy more of the time with her.x
  12. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    South Northwest
    [WARNING: live firing navel gazing exercise in progress. Stick to the paths or you may step on unexploded rounds of introverted pontification or delusional dogma poo.]

    I've survived quite nicely by being a permanent pessimist. It's prepared me well for everything life's thrown at me, including becoming a dementia carer. I mean, if your motto is "no matter how bad life gets, it can always get worse!", what's to fear?

    I know optimists tend to be happier, healthier, live longer, get a lower chance of depression and dementia, and are so much nicer to be around, but looking on the bright side must get very tiring. I tried it once, but had to wear sunglasses to stop myself being dazzled by the limitless possibilities of a positively lived life.

    Not sure I fancy trying it again. Makes me shudder just to think of it! So I'm probably ideally suited to being a resident in what I've often described as my mother's open prison. I have a little freedom, but not enough to get spoiled by. The tyranny of choice and opportunity was never for me... I like a few simple rules to live by. Maybe it means I never grew up properly (which would explain a lot) but in a previous era I'd have ended up as a monk or shepherd living high on the moors with hundreds of sheep, trenchfoot, and a thousand words for drizzle.

    So... so maybe I'm just a complete weirdo, but there is a kind of optimism to be wrung out of this isolated caring lifestyle. The fewer options you have, the more you are forced to examine yourself and work out what really matters to you. Ok, if you decide that what really matters to you is dumping all your worldly goods and travelling the world with the contents of a rucksack, you're a bit stuffed. But if you decide to take an Open University course in daytime TV, bathroom cleaning and staring into space wondering what you've done with your life (which is surely a course at one of the recently created 'Universities of Just Down the Road' littering the landscape now) then this is a time of wondrous opportunity.

    I'm lucky because I've got my guitar to lean on. It's been a constant companion through my adult life, but always a very frustrating and unfulfilled one until I became Mum's carer. Now it's part of the glue that both lubricates and binds the day together for us both; it's something that entertains Mum and makes me feel I'm progressing in some small way.

    Even acts as 'simple' as being here on this forum, whether helping others or simply being passive members of a community, can help us shape a new way of looking at ourselves and the world. I mean, we're looking after folk whose lives, on the whole, show to us every minute of every day how fragile and wonderful our sense of self is. Are we put on this Earth to go on five holidays a year, eat at bistros every night (are bistros still a thing?) and live the life of proverbial Riley?

    Surely not. That's nice unwork if you can get it, but is that how most of humanity lives or has ever lived? No it's not. Most of humanity is still focused on the family unit, on surviving from one day to the next, perhaps on moving to somewhere like here where capitalism's 'life of Riley' is at least a option.

    But I think much of the freedom we generally enjoy here isn't really freedom... or sustainable, or desirable long term. Perhaps what we, as relatively isolated carers, want back -- the freedom to be and do whatever we want -- was always an illusion putting huge strain on us (as mental health stats continually prove) and on the rest of the world. Perhaps the whole of Western society has a form of cultural dementia... we do whatever we want, whenever we want without choosing to be aware of the impact it has on the world.

    So maybe the future is putting everyone in a kind of cultural prison and we're ahead of the curve? The less you have, the more you appreciate it. We need to learn to face that truth again. The post-war generation we care for now lived through that kind of experience and took it for granted. Less is more will become the new cultural touchstone whether we like it or not. Nature will force that upon us if we don't choose it for ourselves, and we -- isolated and restricted carers -- are pathfinders for that new reality. The lessons we learn now will prepare us for what's to come. So find pleasure in the simple things in life -- whenever you can, wherever you can -- because they are all that really matter. A smile; a blue tit landing on the window sill; a cloud shaped like a mushroom; the smell of the last rose of autumn; the reassuring, steady patter of rain on the window; the chuckle of a child on telly... you get the idea. Insert your own nauseating platitude here!

    Mmm... here endeth the advert for the gin marketing board. Drink up everyone, either win the lotto of get blotto is my new motto. But I'll leave the final word with my mother. While wondering whether to hit 'Post Reply' I just took time out to help her in the loo and was, as usual, my usual smart-mouthed self (you'd never have guessed, would you) trying to ease the awkwardness with a smile. Mum just gave me her best withering, sceptical look and I said "ok, Mum, I give in. I'll stop being a smart @rse!" Quick as a flash Mum replied "Thank god for that!"

    Sometimes she can still cut through the dementia fog as fiercely as ever! But where was she about ten paragraphs back when you needed her to avert this car crash of a post?

    Have a nice day everyone. It's wet, it's miserable, and it's only 59 days til Christmas. But if you survived reading this, you can survive anything. Except maybe bird flu. Which reminds me, must try to get jabbed next week. See, the trick is always to have something in life to look forward to! ;-)
  13. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    @Andrew_McP , as I’ve said before please gather these pieces up. There is a book there for sure .
    @annielou , I hope today is going better. I think you do need an escape plan, as things can’t carry on like this.
  14. TNJJ

    TNJJ Registered User

    May 7, 2019
    That did make me smile.I like your humour
  15. Starbright

    Starbright Registered User

    Apr 8, 2018
    @Andrew_McP ...you really make me smile sooooo you see ..... something very Positive :):)

    Keep on posting please A x
  16. Crafts101

    Crafts101 Registered User

    Aug 22, 2019
    Oh @Andrew_McP thank you - I so needed to read that! You are a modern day philosopher my dear. Brightened up this dreary day and made me chuckle. Now of course I have to explain to mum what was so funny and what can I be doing on that 'thing' I keep tapping on...... Nothing like a challenge eh?
  17. Palerider

    Palerider Registered User

    Aug 9, 2015
    North West
    You really should publish your writing @Andrew_McP . Even in this mess I'm in you made me chuckle, and i haven't actually laughed for some time.

    'Drink up everyone, either win the lotto or get blotto is my new motto'

    What more can I say.....
  18. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    South East
    Whole heartedly agree ! I look out regularly for your posts @Andrew_McP as they make me smile and put me back on an even keel . Thank you .
  19. Lirene

    Lirene Registered User

    Sep 15, 2019
    Mr wonderful @Andrew_McP
    In the midst of a pickle - you made this chick chuckle!! Publish and be dammed they say - please, I dare you!
    Love and hugs everyone xx
  20. annielou

    annielou Registered User

    Sep 27, 2019
    @Andrew_McP that was funny, a bit depressing, but funny and interesting to read. You have an interesting way with words and it seems like you brightened up quite a few of us today x thanks x

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