Carers are not always helpful…

bullyingSome time ago I attended one of the consumer forums where prior to the event it was not made clear the groups would be split into two; that is the people with dementia (PWD), and their carers/supporters of the people with dementia were separated. About 10 minutes before the end of the session, the reason why became crystal clear. One of the family members of a PWD came into our room interrupting our session.

We still had about four slides to comment on, but this carer rudely opened the door, entered, and refused to go our even though the facilitators of our group said we were not finished. This carer then talked over the facilitator, talked over us, and virtually and immediately shut us (PWD) up, effectively ending our session before we had finished.

Since then I’ve attended many consumer forums, and always, if we are workshopping topics in groups around the room with both groups present, the person with dementia says nothing, if their partner or family carer is present. In the morning tea or lunch breaks, they talk easily, even though some have some speech impairments. When I ask why they don’t contribute in the sessions, they say they can’t be bothered, as their family carer talks over them, or makes fun of them… I wonder if they had been disabled from a stroke or car accident if this would happen?

Last week I attended a support group for people with dementia and their carers, and the same thing happened. In fact, it was worse than that, as some family care partners laughed at, and about, their family member with dementia, right in front of them, pointing at them, and generally humiliating them (us) for our disabilities. Yes, it is a tough gig being a family carer, but it is even harder living with a diagnosis of dementia. I know, as I have experienced both.

People with dementia need everyone to respect them, and to enable them, not to laugh at them and talk over them. I was even told by one carer I and another person not present that evening are lucky to have the type of dementia we have, as “obviously it is not as bad as others”. This from someone who knows SFA about how hard we work to maintain our function… it was ignorant, offensive, and hurtful. My husband almost got up and walked out, and even considered hitting this carer on the way out. Thankfully, he did neither of those things!

We (PWD) have a long way to go, especially with those closest to us many who could be more caring and supportive and less disabling. I know many family carers or supporters of people with dementia who are not at all like the people I have described above (J, L, B, A, you know who you are, and many others amazing family carers xox), but those who disable us do so much to damage to our willingness to help ourselves, and our sense of hopelessness, which in turn encourages a learned helplessness.

It is also a form of bullying, and we need to speak out about it, for it to stop… we would not accept bullying of our children, and people with dementia should not have to accept it either, especially not by those who proclaim to be caring for us.

37 thoughts on “Carers are not always helpful…

  1. Hi Kate, I follow you on twiter and now here. I was wondering how you feel or other PWD about the use of the word “behaviour” when describoing someones difficulty in communication. I feel behaviour is a negative and often referred to children, bad behaviour , good behaviour. It urks me that it is thrown around so freely. We know that a “behaviour” is ususally the result of someone trying to communicate dont we?

    • As you will see by the email I sent you replying to you from my Contact form… I detest the terms ‘behaviour’ and ‘challenging behaviours’!!! More on that to you soon. And yes, it is almost always someone trying to communicate something, and very rarely a real symptom of dementia.

  2. Hi Kate – you’ve hit another nail on the head – well done for speaking out. I am probably as guilty as a lot of carers in sometimes talking over the top of my husband, but I usually only do it if I can see that he is either not understanding the question or is struggling to answer the question. It’s written all over his face. He also looks to me for support and (sometimes) response. But I would NEVER demean or humiliate him, especially in public, where everyone else is a witness. That is just plain disgusting. Thankfully in the support group I attend we don’t have anyone who appears to be like that – yes there is anger and frustration, but it’s probably directed more at the situation, and how they are (or are not) coping, than their loved one with dementia. I get very frustrated with Steve sometimes, but I find I just walk away, have a cry (if needed), go for a walk, and a short while later it’s all forgotten about – by him, anyway 🙂 . After all, he didn’t ask to get Alzheimer’s, so there is no point being angry at him – he (and you) cannot help being the way he is now. We – as carers – are the ones who have to adapt, despite it being incredibly difficult at times. I imagine that it is much much harder for Steve/you to adapt, knowing that you are perhaps unable to do the things you used to do so easily. Look after yourself, and we will catch up with you and BUB soon 🙂 xxxx

  3. I hate to hear that in groups people with dementia are talked over by others. It sounds like it is really important to have separate groups, perhaps coming together afterwards. Oh, dear, we all need to learn how to respect everyone equally.

  4. Pingback: Carers are not always helpful… By Kate Swaffer | Melanie's Blog

  5. Hi Kate
    it is the same over here in the UK. My husband stopped going to a carers group because all he heard was people complaining about their loved one. At our young dementia group every few weeks we split into the two groups and it is surprising how much the (PWD))open up. Some of our group never speak when we are altogether but speak openly when not. I also can say more when separated as I don’t like hurting my husbands feelings, as he is the best carer anybody would want. I must say the things that upset him is seeing me unable to do things I could do easily a few years ago. He sounds very much like your BUB. He lets me do what I can but is there as a backup when I can’t and especially when I get frustrated that I can’t say or do things that I used to do.

  6. Hi Kate, there should be no excuse except ignorance. For those willing to learn and be educated on the subject only then will approaches change. I hope that in the future a persons human rights will be respected. We can’t change the world, but we can make a difference. Best wishes.

  7. A lot of carers (not all) deep down seem to resent that their partner has dementia. They should realise that it isn’t anybody’s fault, it just is. The dementia is the issue, not the person living with it. The people living with dementia are the true dementia champions. Carers should be proud to know them and treat them like the incredible human being they are.

    • Yes, Peter, you’re right. I am actually angry with my sister for getting dementia because I miss the support she gave me. I realise this is completely irrational and I have to keep reminding myself that it is not my sister’s fault. I have had to grow up and rely on myself for the things she used to do for and with me. It’s easier for me because I don’t look after my sister. I imagine I would be a horrible carer. Luckily she lives in a really good care home where the staff are really fond of her and my brother who is a rational human being visits her every day and reports that she looks really happy.

    • Hi Peter, totally agree and in a way their life experience makes “some of us” better human beings. So much positive can be learned by living and sharing a life with a person living with dementia. Only after my Dad passed away and the peak of my grieving subsided did I realise that I discovered the best in me! My loving father/daughter relationship had no change and I am grateful that I just knew how to continue living a life with my Dad…to the end xx

  8. You must have superhuman self-restraint to not give these boorish, dim and self-absorbed people a Jeremy Clarkson!

  9. Hi Kate. I feel like I’m following your life and your footsteps Kate having only been doagnosed last July. If I can inspire a fraction of the people you have, I will feel I’ve done ok. My constant theme at present seems to be around encouraging ‘helping to adapt’ instead of ‘disabling’ PWD so this blog shows me the issues are the same the world over – how sad, but how great that we keep trying to educate and change attitudes.

  10. Kate, this is one of the reasons that some time in support groups shared is a good idea. Of course, it depends on the facilitator and the rules for the session clearly discussed and agreed upon. They need to learn to accept us as much as the general public.

  11. Does not surprise me at all. Disturbs me greatly. Shows how far we have to go in educating people about all areas of treating someone living with Dementia. Thank goodness my carer ( my wife ) and family fully understand and treat me accordingly. How could someone treat their own family member that way. Disgusting.

  12. Yes. I have seen my own brother bully, demean and mock my mother while proclaiming what a saint he was for “taking care” of her for decades just because he lived down the road. He also tells everyone how much he loves her. Complete load of crap. His behaviour makes me sick.

  13. Dear Kate, unfortunately I was nodding my head throughout your article. I was a carer for my late father with LBD and experienced so much stress precicely because of the bullying my father endured mainly from his closest. Our cultural background is very ignorant regarding dementia and I am on a mission to put my $2 worth to change it…. at least a little !! Best wishes and I admire you as a human being with unbelievable strength.

    • Thanks for joining the conversation here, and speaking out with your personal insight. So sorry you were nodding your head, although I do know this is the experience of so many, even those who won’t admit it. Hugs xx

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