1. Expert Q&A: Living well as a carer - Weds 28 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 Wednesday 28 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.

I Don't Want To Be This Person

Discussion in 'I care for a person with dementia' started by Andyp101, Feb 20, 2018.

  1. Andyp101

    Andyp101 Registered User

    Dec 5, 2017
    Hi All,

    I am looking after my 81 year old Mum who is in the latter stage of dementia. She requires 24 hour care and I have been here for 2 years. As some are aware, due to family difficulties I have been doing this alone aside from a care visit of an hour a day. This has recently been increased to 4 hours a day 5 days a week with an overnight stay once a week. I am burdened with stress, depression and anxiety from before moving here and tried to commit suicide about a year ago. SS know all this; I have a very good SW and it is through her (and the obvious fear of 'Carer Breakdown') that I have had the extra help.

    It is not enough. Mum reserves her worst behaviour for me. She needs constant reassurance - constant - and will forever question my intent 'You don't love me', 'I should go and kill myself', 'Well, kill me if you want then'. I have tried reassurance, deflection, distraction, everything. As everything 'resets' with her after thirty seconds it is impossible to keep her content and unafraid.

    I don't want to be the 'What do I have to do?' I know the causes of her fear and insecurity. I know that everything is frightening. I know all this. It is just so hard to be the person I want to be for her, the person she needs me to be. I am not good enough.

    I am looking at care homes but the process is so involved. All the while I am trying to keep Mum balanced, not tearful, not fearful. And I am failing.

    Mum deserves better than me. And I can't help but think that.
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Oh goodness, what a sad post. I know it's easy for me to say but please try not to think that way. You have supported and cared for your mum for so long - you have done all any of us can do - your best. Wishing you strength.
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    Your mum is lucky to have you @Andyp101. Dementia is the most difficult illness to care for. I've cared for my dad for 5 years and he is now just entering moderate to late stages. I've managed so far, with the recent addition of a home help, but just taken him to his GP as I now realise we need more help.

    I couldn't do what you've done and give dad 24hr care. It would break me.
    You are stronger than you realise and you should be proud of everything you've done for your mum.

    I hope your search for a care home is not too stressful.
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hi @Andyp101, your thread resonates with me as my wife, who now has Alzheimer’s, was a chronic depressive for decades before we met. I tried everything I could think of to ease the depression but nothing worked. Now that Alzheimer’s has entered our lives the depression is also getting worse and I face many of the questions/statements you now face. I’m lucky insofar as we don’t yet need 24hr care but I too am at a loss as to what to say/do at times because I’ve tried all I know and even when we agree on a course of action my wife will forget the conversation. At present we are on a long vacation in Cyprus but when we get back home I intend to ask our GP about an increase in my wife’s antidepressants. I guess I’m just saying you are not alone and maybe a tweak of the meds will help.
  5. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Im so sorry Andy.
    You are not a failure. Its just that dementia takes everything that you can give it - and then some more. Eventually it will eat you up and spit you out because it has become too much for one single stressed out carer to manage. It is not your fault. You have done your very best, but it has got to the stage where it is just not physically possible.

    I do hope you can find her a good care home soon
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hello @Andyp101
    I'm glad a good Social Worker involved and increased your mum's care package
    go back to them and explain that, even so, you are finding it extremely difficult to provide the care she needs and ask if they will organise emergency respite whilst you arrange a full time care home placement for her - as they know your history and her situation, I hope they will be able to do this for you both
    make sure both your GP and your mum's know how things are
    to me, you are doing the bravest thing any son can, by admitting that you can't cope on your own and sensibly seeking support - much better for you both than hiding away and pretending you are both fine
    sometimes we children do have to acknowledge that it's time to have a team of carers look after our parent, so that we can take some time to settle into a new routine, visiting out parent and sorting out our own life
    it's not that your mum deserves better than you; she has the loving son she deserves who is organising the best care for her that he can find and who will be there to make sure she is well taken care of
  7. Risa

    Risa Registered User

    Apr 13, 2015
    Mum deserves better than having dementia. And I can't help but think that.

    I've reworded your sentence Andy as I think that is what it should read. Please don't be so hard on yourself - you are obviously a very caring person doing everything possible for your Mum. You've said yourself that it is impossible to make her feel content and unafraid and I totally agree with you. When reason and logic have gone, emotions get out of control and as carers we can only offer comfort and reassurance. We don't have any other tricks up our sleeves.

    Is your Mum taking any meds such as anti-depressants? They can help. If you are really struggling then don't be afraid to let your SW know you are suffering from carer breakdown and see if your Mum can go into respite. Don't feel a failure for things that are out of your control {{{hugs}}}
  8. father ted

    father ted Registered User

    Aug 16, 2010
    You are not failing Andy. Your Mum is lucky to have you and it sounds as if you have been coping and keeping everything ticking over in very difficult circumstances.

    You say due to family circumstances you are doing it all alone but not a word of recrimination nor hint of resentfulness in your words. You praise your social worker where some might have felt what she offered was inadequate and yet your only words of criticism are saved for yourself- the one person doing all the work.
    Try to see what all the other posters are seeing. Your Mum needs a lot of support which you provide and you quite rightly are looking at residential care. I know it is tough to even do visits when you are only able to leave home for short periods but keep looking and eventually you will find somewhere that is suitable.

    Hopefully some respite can be offered until then and you can try and live some of the life you have been given for you alone.
  9. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
  10. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    The fact that you are the one caring, says it all. Are there other family members able to assist? It is all so familiar, that one and one only of the siblings takes charge of this caring role, with all its extremely demanding elements. It is so important to understand that dementia is the antagonist and NOT your mother. Easier said than done of course. When dementia presents in this way, you feel at times, helpless and inadequate - on top of which, you 'feel' rebuffed by your own mother, as if you can never satisfy her needs - when in fact, you are doing all that is humanely possible to do so! All of this is clouded by a deep kind of despair and perhaps feelings of isolation. Which way do I turn? One thing which becomes evident in the future, when this turmoil has passed, is the fact that you CANNOT go it alone in the caring role, when your loved one is afflicted with dementia and all of its complexities. If your Soclal Worker is at your side, then this must be of considerable value when looking into the idea of Care Homes - something again, which becomes inevitable, if only to allow proper, sustained care and a 'quality of life'. I can understand your anxieties almost to the word. I too cared for a mother who presented with Alzheimer's and vascular dementia and the caring role was at first, demanding, but possible. Then it became much harder and the 'personality' traits which accompanied the 'nursing' role, i.e. "you do nothing for me! Leave me alone! Help!! Police!!" and some quite traumatic moments, culminated in "emergency respite" evolving out of a UTI and admission into a Care Home. None of this was easy and you will know only too well about feeling completely wretched at times. But you must NOT ever put yourself down. What you are doing currently is clearly from the heart and it is YOU who is doing the caring! Never forget just how important that is. But when it comes to having to look into that next stage (Care Home) despite all the angst, tears, feelings of utter despair - it DOES improve. Once your loved one is 'settled' into a GOOD facility, where a team of Carers can apply all that is required in proper care, then visits can become both cathartic and genuinely positive for all concerned. I found this to be the case. There could not be a closer bond between myself and my late mother and it was a very tough journey emotionally - but not one which did not have light at the end of a sometimes very dark tunnel. Finally, if you can say to yourself that "I can do no more than I am doing now", that is a huge plus. The fact that you are there by your mother's side endorses that. Allow yourself some breathing space and do not despair. You are not alone and that is a fact. This site is testimony to that and there will be a thousand folk out there heralding your words from the bottom of their hearts! With warm wishes.
  11. Andyp101

    Andyp101 Registered User

    Dec 5, 2017
    Thank you all for your replies.

    Writing my post enabled me to vent a little. I went back to Mum, hugging her and both of us crying. I apologized for not being a better son but I was talking to Mum, not the person she is now. It was not a reconciliation. Mum reset a few minutes later. We have an overnight scheduled tonight and Mum has been constantly checking and re-checking. 'Do you love me?' 'You don't love me.' 'You want me dead.' 'No one loves me, I might as well be dead.'

    I am thinking hard on contacting my SW tomorrow.
  12. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    Greater London
    24/7 on your own, you give yourself a huge pat in the back you are being the most amazing son.
    This awful illness that clouds your Mums world just doesn’t let her say what she would - which I think would be a massive thank you, filled with love.
    Re read the posts some very wise words from great people.
    Reach out to the SW, they will be delighted to be able to help. You deserve some help, take it.

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