Dementia: Mea Culpa

I have to accept responsibility for my part in the mess we got into yesterday.  There is a certain irony that the guy who sets out to minimise his wife’s distress becomes complicit in adding to it: in no small way.  When I think of what I took part in I shudder with disbelief.  In fact words fail me when I look back on what I acually did.

I took part in a charade that gave Maureen the opposite message that I convey day after day.  We all told her in no unceratin way  that: ‘you are not capable of looking after your husband when he is ill’.  What on earth were we doing?  I think it requires some examination to salve all our consciences, and put things into perspective.

In our defence I would argue that we were following a medical model based on Prescribed Disengagement as Kate Swaffer so eloquently describes it.    So we conveyed to a nurturing wife that she is  no longer capable of looking after her ailing husband.  In fact he is so ill that you need to be taken away to ease his burden.   Maureen kept saying at the Day Centre: ‘my husband is ill and I want to go home to look after him’.  She has spent a life-time nurturing others and we were telling her she no longer has the capacity to look after her ‘old man’.  We were all wrong.

It took a while for me to get things back to normal at the ranch.  Hostility about me getting ‘my friend’ to take Maureen to a Mental Home took a while to abate.  She played her cards well and hit me where it might have hurt.  I don’t blame her one little bit, and she continued her attack on the social worker by phone.  Her line was strong and she left the social worker in no doubt that she would pay for her actions.  I will back Maureen in her complaint if she continues in this vein.  She needs to know I am behind her, and will support her in raising concerns.  No-one likes being ‘dumped’.

What all of this has proved to me is that the medical model and Prescribed Disengagement is not the route  for us.  It is up to all of us to find our own way on our journey with dementia.   This came home to me following a chat with our chemist yesterday.  Evonna has helped us to develop our approach to dementia based on a mantra of: ‘Maureen is not ill she is recovering from stroke’.  I forgot that yesterday and became infected with the ‘medical model’.  I hope that doesn’t happen again: Maureen deserves better than that.  It’s amazing how you can lose your way when you are under the weather!

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About Remember Me

I am a retired adult educator. My wife had a stroke in February 2014 and now has mixed dementia. Her recovery from stroke has been exceptional apart from 50% loss of peripheral vision and vascular damage. 'Dharma For Dementia' is my approach to being Maureem's Care Partner: it aims to end the suffering of 'Prescribed Disengagement' (Swaffer) .
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8 Responses to Dementia: Mea Culpa

  1. Dominique says:

    It sometimes takes things to go “wrong” to make us see where we – as carers – can often fail. Don’t be hard on yourself – you’re doing the best you can, and at the time it seemed like it was the best course of action to help you. Maureen will hopefully forgive you in time – she may even forget the whole sorry day. Take care 🙂

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    • Remember Me says:

      She has already I think she know who got it wrong yeaterda. You should have heard her on the phone to the social worker yesterday: lucid and coherent. I reminded her this morning what a great nurse she is encouraging me to take some fresh air yesterday.

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  2. Dawn says:

    Hi Paul,

    I came across your story on TP and have been inspired by your totally unselfish attitude and constant efforts to improve your dear wife’s quality of life. You are so proactive constantly putting the needs of another ahead of yourself.
    My husband and myself do not have Dementia, however should I ever develop this dreadful disease I would consider myself most fortunate if my husband were as determined and selfless as yourself. Faced with such adversity I would hope he would think of himself (if my ability to do so was diminished) I would want him to forgive himself all and any perceived errors in judgement.
    Faced with a choice of ‘annoyed or safe’ (with or without dementia) if it were my loved one ,I would choose safe, full stop! And no I don’t consider myself selfish or uncaring.
    So now come what may, please forgive yourself and give yourself a ‘pat on the back’ for what shines through clearly from each and every one of your posts – your total devotion to your wife.

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  3. I’m sorry you both had to endure such a difficult time yesterday, but now hopefully you’ve both made it through, and can turn the page with a better understanding of what works and what doesn’t, and a better understanding of your individual needs. Hope things are going better for you both today.

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    • Remember Me says:

      Maureen is in great form today. I think we might patent the walking, whisky and music solution to lifting mood. I bet those drug barons wouldn’t like us coming up with something that can really elevate mood. The evidence is there you should see how she is this morning. Chloe has just helped her to wash her hair and she looks fantastic.

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  4. MCI Alice says:

    Do not be so hard on yourself. There is no one model that works. From being in support groups, I have realized that living with a spouse with Alzheimer’s is not so different from living with a spouse–unique in each case despite certain commonalities

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