I had an epiphany today

Discussion in 'I care for a person with dementia' started by AndreaP, Sep 1, 2015.

  1. AndreaP

    AndreaP Registered User

    After the awful visit with mum on Sunday I went to the CH today to see the doctor who visits Tuesday. I sat with the Director of Care and the GP and went through mum's complaints about the place. I asked if she could move to another section where the people weren't so far gone but they said there was really only a couple of people who were with it and they might not relate to mum too well.

    They did agree that she could shower herself and choose her clothes for the day without assistance. I hope the message gets through to the carers. I went to see the activities co-ordinator and arranged for mum to be taken on the weekly excursion.

    I couldn't visit mum - I wasn't up to it. The activities co-ordinator said not to visit in the afternoon. She said dementia patients are much better in the mornings and admittedly it was mid afternoon on Sunday when I was there.

    After my visit I went to see my friend Jane whose father had dementia and ended up in a CH. I explained how mum was in despair, hating me and how I was at a loss as to what more I could do. I described mum's delusions and non existent memory and the paranoia. I said how I had looked at a lot of places before selecting this one.

    It may not seem much but Jane was very helpful. She asked if I could have done more in finding a good place for her to live. I truthfully answered "no". She asked if mum was likely to be happier somewhere else and the answer was "probably not". Was she getting a good standard of care? I said "yes I believe so". Her response was "then what more could anyone do?" She said "you've done the best you could and now mum will have to make the best of it. Her disease has brought this upon her, not you, but she is incapable of realising that. You must console yourself that the perfect environment for mum doesn't exist and where she is is the next best solution." And the most telling for me was "you are not responsible for what's happened to your mother - the Alzheimer's isn't your fault. What you've done is provide her with the best possible care available. So stop beating yourself up over mum's situation."

    For me this was a revelation, silly as that may sound. I think I am so used to mum blaming me for everything that I took on responsibility for her misery out of habit. I decided that while my brother is visiting every two days (he lives across the road) I will continue to manage mum's affairs and leave the visits up to him. I'm not going to allow myself to be punished any longer by mum for her disease.

    For the first time in months I don't feel nauseous. I do hope Jane's words are as meaningful to others as they were to me. The Guilt Fairy has been banished from this house forever (I hope) :eek:
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    That's so heartening to read AndreaP.
    It takes a good friend to know what you need to hear and find the right time to say it.

    Any time you feel yourself slipping back - come and read your post over to yourself!
  3. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Janes words are the words of experience and are perfect.

    Keep that in mind when you doubt anything to do with the situation.

    Hugs xx

    Sent from my iPhone using Talking Point
  4. Owly

    Owly Registered User

    Jun 6, 2011
    "I'm not going to allow myself to be punished any longer by mum for her disease."

    That sentence really stood out for me. You know there is a concept called "referred pain", for example a trapped nerve in one part of the body can cause a pain in a quite different part, because the pain has travelled.

    Your Mum's pain at what has happened to her has been projected onto you. You are (kind of) a distant part of her nervous system. But in fact you, like the distant limb, did nothing to cause the pain, but that pain has to manifest somewhere.

    At the end of the day, you want your Mum to be as content as possible. If that means staying away from her, so as not to trigger her "referred pain", then that is also doing your best for her. So I totally agree with your decision to let your brother do the visits.
  5. Bod

    Bod Registered User

    Aug 30, 2013
    Well done!
    You've seen the wood, through all the trees.

  6. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    I have just read this and it has inspired me too!

    I can't believe how many others stories mirrors ours exactly.

    I, as/was the same as you. My mum is like your mum to a T.

    My mums home is not plush but the care is good and that is all what matters at the end of the day.

    So yes, I have taken something from your post too. xx
  7. Jesskle66

    Jesskle66 Registered User

    Jul 5, 2014
    I need to copy Jane's wise words down and have them for the times I feel so low about mum being in a CH. They have given me such a feeling of peace. If you get the chance please tell her that you have shared her words and questions and they have helped me and will help me in times to come.
  8. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    Jane sounds like a good friend, I am glad you have her and that you have a plan
  9. Dustycat

    Dustycat Registered User

    Jul 14, 2014
    North East
    A revelation indeed. Thanks for posting. Has certainly relieved me of some guilt today. X
  10. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Your friend Jane is both wise and straightforward but kind. I'm glad she was able to show you how things are. A good friend indeed.
  11. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    very well put and said..........yes we have to realise that it isn't the person talking it is the disease. All I get from my mum is "be nice to me. Why can't you be nice to me." I don't know what nice is anymore.
  12. Angela T

    Angela T Registered User

    Jul 13, 2014
    Thank you Andrea for sharing Jane's wise words with us. What struck a chord with me was :"You've done the best you could and now mum will have to make the best of it" and it reminded me of "The Four Agreements - Don Miguel Ruiz's code for life".

    Agreement Four is:
    Always do your best -
    Your best is going to change from moment to moment; it will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self-judgment, self-abuse and regret.

    I have found this helps remove guilt - in any situation, including dealing with parents/partners who have dementia.

    Like others here, I have done, and am doing, my best for my mother. I cannot do more. This helps me not feel guilty - it would never be enough in any case. Alzheimer's has a way of sucking us in - we need to protect ourselves...
  13. looviloo

    looviloo Registered User

    May 3, 2015
    I love the Four Agreements, it's a book that has helped me a lot and I am reminded to listen to the audio version again, as I find it's a great way to really absorb it :)

    Andrea, you have a wonderful friend in Jane, she gave you great advice. I had a similar epiphany recently, though it was a more gradual realisation and there are still times when I forget and become anxious again. But it's a massive step in the right direction!

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