Image source: Kate Swaffer 2020

The quote below is the type of thing I read too often, written by a care partner about the person with dementia that they are supporting (love?). It’s one of literally millions of public posts similar to this one, that inspired my blog published yesterday. Ouch is probably an understatement.

I’m sick of everything. Sick of him not being able to speak.hear or write intelligibly, sick of him not understanding what I write, sick of people telling me how well I am coping, sick of being told to get out more, sick of his lack of any sort of emotion, sick of him just staring at me when I try to communicate, sick of him ignoring me and others who, bless them, are trying to help, sick him using me as a taxi driver since he stopped driving,sick of everything.
My good friend’s husband died suddenly last week after a lovely golfing break & Im actually jealous.

This is just a sample of what’s out there. Forget the long goodbyes, as that sounds almost positive. Especially in contrast to reading graphic accounts of faecal and urinary incontinence, wet beds, ‘challenging behaviours’, too ‘lazy’ to get involved, or communicate, and so much more.

Oh my goodness… if we (people with dementia) published things like this about ‘carers’, we’d all be locked away! Long before we got to end stage!

Be horrified…

If you’re not, you probably should be.

8 thoughts on “Ouch…

  1. It must have been very difficult to articulate how she feels. Don’t forget though, us people who have dementia would love to be anywhere than going through this. I would love to be able to get in the car and drive myself to visit siblings, but that chose has been taken away from me, (I am 62). I would give my life to be working again, but that also has been taken away from me.

    Liked by 1 person

  2. Very painful. Of course this person is going through tremendous trauma. It would be good to hear that counselling and other support could be offered to her to help her cope. However, what comes across is the idea of her husband giving her a hard time rather than going through his own hard time. The phrases of him using her as a taxi, and of him being too lazy to get involved or communicate are especially harsh. I’m sure he would love to still be able to drive, and the frustrations of not being able to communicate are torture. Sometimes even the most devoted of care partners need a reality check.

    Liked by 1 person

    • Of course care partners have a hard time, and it is very difficult for them. As you say some of the phrases are harsh… and cruel as if it’s his fault. I think that’s the thing that irks me the most when I read comments like this one (which is often). Most people would be horrified if they knew what was being said about them too 😢😢

      Liked by 1 person

  3. Hi Kate,

    Yes, it is horribly distressing to hear statements like these, which because of the circles in which we mix, we unfortunately hear too often. It is at these times that I am relieved to be taking care of myself (although I realise that this has a used by date!!!!)

    However, I would also add there have been many times that I have seen and heard loving carers that have brought tears to my eyes knowing that I am missing out on having such a loving, care partner.

    Perhaps much depends on both the individual personalities and the nature of the relationship prior to the person becoming a carer. Taking care of another person’s needs is not a job for the faint hearted, but the cornerstone has to be love and respect together with the ability to recognise that dementia is more often than going to change the person they love – that’s the nature of the beast. Carers also need some support (physically and emotionally) and because this is unlikely to be reciprocal it generally needs to come from outside the relationship.To seek this out is the responsibility of the Carer, as part of their self care.

    Liked by 1 person

    • Agree with all you’ve said Bobby, and yes, as we are changing in ways carers are not, and we have absolutely no choice. As hard as it is, both us as well, they have a choice. x


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