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. copsham

    copsham Registered User

    Oct 11, 2012
    593
    Oxfordshire
    I peeked in to Talking Point this morning and felt so overwhelmed by the care and kindness of everyone that I am sitting here in tears. I feel as though I have had no feelings in relation to my mother (vascular dementia in a nursing home) and suddenly I found myself sobbing my heart out!

    I do not understand myself. I was a loyal daughter, visiting my mother with dementia every day when she was at home, and at her worst. The journey was a 2 hour round trip. I made sure she was safe and had the best possible care. Then I arranged for a nursing home placement and she has had over 5 years of positive care, obviously getting less and less "with it". For four and a half years I visited at least once a week ensuring that she had everything that she needed. But everything has changed.

    About 6 months ago she was more "vacant" than ever. I was tired but made the long journey to see her. We greeted each other and then she said "You don't mind if I go to sleep do you?" I had just driven 2 hours to see her. Since then I have found it so hard to visit her. I keep thinking I will visit tomorrow but tomorrow never comes. Until now I have thought that she doesn't realise that I am not visiting much, so with other diversions in life, I have told myself that my lack of visiting is not a problem. But if I think about it I feel guilty and wish I could get back in to visiting but have been quite cut off.

    So it was to my suprise that I found myself sobbing in relation to some sensitive Talking Point posts. It is such a long road. I was as supportive as possible when she was at home with dementia and in a nursing home, a total of 8 years. But my commitment just disappeared about 6 months ago. I have tried to get it back. I have made a visit, promised myself I will get back to visiting regularly then time goes by again.

    This is in the context of her being a very negligent mother when I was a child. I felt upset on my last visit when two staff separately told me how lovely she is, so caring etc. I wanted to say "you don't know the real her" and had to bite my tongue. I am pleased they feel kindly towards her - what I want from a nursing home.

    So I started writing this post feeling why on earth am I getting upset reading Talking Point posts. Now I know! It is good to know there s a forum where there are so many people with so many experiences and different opinions, I know someone will understand me!

    Thanks for reading.
     
  2. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    500
    Copsham,

    Bless you. You have grief come up behind you and give you a walloping big bite. It sounds as though you did a huge amount for your mum and tried to get her the best in terms of care. Letting go is hard. Letting go of someone who does not appear to realise you are there or not is a toughie.

    Be kind on yourself and also give yourself a chance to grieve. It feels awful at the time, however, it is much better out than in. Doesn't feel brilliant at the time but far better dealt with in the long run. Unlocking the floodgates does feel overwhelming at the time but is effective for clearing blockages which are stopping you going forward.

    Thinking of you.
     
  3. copsham

    copsham Registered User

    Oct 11, 2012
    593
    Oxfordshire
    Thank you "Oh knickers" You said "You have grief come up behind you and give you a walloping big bite" ... is exactly how it feels .. there I was carrying on my every day life and wham enveloped in a flood of grief .. so unexpected.

    I should have seen it coming as last weekend I read Michael Rosen's book on sadness and grief (see it on Amazon) and it opened my emotions but I quickly bottled it up. It is actually a relief to let these feelings out, so thank you, thank you for your supportive post!
     
  4. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    460
    Chard, Somerset
    I too care for a mother who never really cared for her children - much too interested in herself. She is still at home with me but has lots of clubs and also goes into day care at an amazing home nearby. They all say how lovely, sweet and caring she is and I always think, 'if only you knew' as she still tries to denigrate and be sarcastic to me.
    I tried to rationalise things, e.g.: am I trying (still) to get her attention and approval?
    But after a while I just realised that I am a much more caring person that she is and would not allow the situation she was in five years ago to continue. And if she had been the sort of mother I might have wanted, would I be the person who could look after her today? If you have read anything else I've posted you'll realise I sometimes need to let off steam and the guilt monster raises its head quite regularly, as does the why the hell did I get myself into this situation question (and when will it end?).
    So, yes, these things come and bite you on the bum but you have done your best (all anyone can ever do) to make sure she is comfortable and cared for. You can't do any more than that and IMO should be giving yourself a bit of a pat on the back
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,143
    Kent
    Oh dear I do identify with this.

    You did everything you could when it was necessary @copsham and now your mother is being cared for by others you feel the weight and responsibility have been lifted.

    I still visited my mother weekly in residential care but her home was only a ten minute drive away. My visits were short and I couldn't get away quickly enough.

    Do what you can , just to let the home know you are in contact and try not to feel guilty.
     
  6. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
    @copsham
    Hi, nothing beats a good weep. I’ve found myself sobbing at some posts too. I figured it is a reality check it’s written down and I’ Saying yes I know how you feel to the poster and suddenly bang you realise you are in the same place and the feeling engulfs you.
    I’ve moved around in a muddled haze for a long time, heartbroken at where we are with Mum.
    Like you exhausted with it. I’ve called in sick today for work, just so tired.
    I get you and send you a hug hope it helps. There are wonderful people on here who care and understand. You can share tears and laughs.
    Time for a cuppa and mind numbing tv.
    Take care. X
     
  7. Scouts girl

    Scouts girl Registered User

    Jan 18, 2017
    308
    Nothing will stop us feeling guilty although we know in our hearts that we do what we do for our loved ones, whether looking after them at home, or making the awful decision to move them into care the guilt can overwhelm us most of the time. I know I couldn’t carry on looking after my mum at home as it was affecting my health and family but still that guilt monster keeps rearing it’s head. I just think we feel that we should have always done more. I know each time I visit my mum and see her bedridden and gradually leaving me, I am heartbroken. I don’t know how I carry on seeing her live this life day to day, but we have to don’t we. She is being well cared for and safe and I try and reassure myself that this is the best I can give my mum now. Knowing that there are so many of us going through this awful journey and being able to write our feelings down on this forum can keep us going through the dark times.
     
  8. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Copsham, welcome to Talking Point. I'm sorry you needed to find your way here but hope it will help you. I've not time for a proper response at the moment, but couldn't read and run.

    I'm another daughter of a mother who didn't do a good job and was often unkind, and we were never close. Like you, I've had those moments where the care home staff tell me how much they enjoy my mother, and I also think, oh, if you only knew what she really used to be like!

    I think that dementia and caring are really, really hard and they impact us in a lot of ways. Don't underestimate how difficult it can all be, and please do your best to be kind to yourself.

    Best wishes and do feel free to post any time, or not, whatever works for you. TP is always open!
     
  9. gene genie

    gene genie Registered User

    Apr 26, 2017
    178
    Thank goodness it's not just me, my mum was a lousy mum really to my sister and myself, my brother on the other hand, well let's kill the fatted calf for him daily.
    I understand why she preferred my brother as she had previously lost my elder brother at 7 years of age, then my youngest sister came along then my younger brother so of course he was everything to her.
    However some 8years ago my brother fell out with mum and has had no contact with her since, we have informed him that she has Altzhiemers and does not remember the row but he's not interested, I on the other hand do everything for her including having her live with me and my partner I haven't seen my precious grandsons for over a month that a long time as previously had them over at least once a fortnight often more, as I can't look after them and mum(they are 8 and 4)and want nannie(me) to play with them take them to the park etc, none of which I can do at the moment.
    I am fed up of mum asking for my brother and making excuses for him so she isn't upset I realise she can't help it but can't help feeling resentful at times, I cannot live my life can't go out can't invite friends have given up work never get a full night's sleep I'm pretty fed up mostly,then feel so guilty for resenting her and her demands, she doesn't realise how my life has changed, and I sometimes wonder if she would care even if she did know.
    Everyone at hospital where she has been in patient 10 times this year see her as a lovely lady so sweet and smiley. YEAH RIGHT
     
  10. MaryH

    MaryH Registered User

    Jun 16, 2016
    120
    Ottawa, Canada
    Mom is nice in general and I love her. But I found her very difficult these days since she bear grudges due to unexpressed feelings. She feels unable to talk back when people bully her or take advantage of her with her mom displine her when she get into fight or argument as a child. As a result, she still talks about her 2 sister in law (dad's brother's wife and her brother's wife) with a lot of resentment sometimes even bordering on hate and both have died a number of years ago and things she was talking about happened 50 to 70 years ago along with some coworkers and acquaitance that took advantage of her.

    People also don't see her slapping herself when upset and doing it to me which she learned from Dad who copied his mom where grandma apparently used to hit her head against the wall to control her family. Mom was upset when dad was slapping himself when I tried to manage his diabetic diet and told him he cannot eat candies all the time or 7 juice popsicles in short order (1.5 cups of juice equivalent) but now she does it to me.

    I am burned out and she says I am exaggerating and complaining. My brother who is once a week for 2 hours if we are lucky is the good son since he is nice to her but I who does the majority for her and make choices that put mom and dad first is a disobidient daughter. Go figure...

    I think those of us who takes care of the parent(s) close to full time are sometimes taken for granted... A friend compared us siblings to the divorced parents where the short term fun parent are admired but the responsible one taken for granted or upset since you are trying to do what is best for them i.e. limit sugar, getting them to do exercise, etc..

    Well despite efforts dad had a stroke and is not paralyzed on the right side and uncontrolled diabetes may have been a factor.

    I have been having a number of meltdowns and crying bouts recently and normally I am pretty strong and used to a high stress job before taking time off to take care of mom and dad. Sometimes it is just too much and you need to figure out ways to take care of yourself too. My sister said she finds it hard to be with mom more than 1-2 hours at a stretch, but that leave me with the majority of Mom's care. She is trying a bit more these days but I am already at the burnout stage and it is hard to come back from it.
     
  11. copsham

    copsham Registered User

    Oct 11, 2012
    593
    Oxfordshire
    Hi all,
    Thanks for the warm and supportive replies. You know, it was a relief to read others saying my mum was terrible too. I know, but I am really shocked at what a long haul this is. Members on line seem to have here for many years, the names are all familiar from years ago.

    It feels that my mother will go on for ever. She was assessed as having vascular dementia, then they said not so she has no specific diagnosis. She is not really following the patterns described. She had been on a plateau for a long time then a minor dip, now a long plateau again. She sleeps in bed most of the time. Gets up three times a day for meals, walks quite well with a walker. Sleeps most of the night, gets up in the night for an occasional wander, gets lost and has to be helped back to her room. Because she is looked after well she has nothing more than an occasional cold. As I said it feels that she will go on for ever.

    What I am missing at the moment is that my mother and I used to be obsessed with family history. In the days before digital records, we used to go off to archives to search. I have got major new family history information that I would love to share with her but obviously no chance. i tried to share once but she was stuck on what her married name was and who she had got it from. Oh well another day ....

    Gene Genie my heart goes out to you! What a hard place to be in. I want to say you MUST make some "me time" but I know how difficult that is. We all have such complicated times - Big hug coming your way from me!
     

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