Guest blog by my B.U.B.

bub 2My darling husband and I were talking about how some of the roles have had to change between or for us, and how much easier it would be for him if he just took everything over for me. It would be easier for him. And it would be a darn site easier for me. But, it would also be very detrimental to me, with regard to my ability to continue to function, as well as my emotional health and the deleterious impact on social isolation. Whilst I have to struggle to do things, it does in fact, keep me doing them. I need help often, but not someone to take over everything for me.

Sometimes he speaks out, occasionally even at a conference, and in New Zealand last year he annoyed at least a couple of family carers or supporters. What he is says is sometimes a little hard for others to hear (oops… perhaps he’s been around me too long?!), but what he says comes from his and our personal experience, what he observes, and from his heart. It also is often an uncomfortable truth, but probably far better coming from him than me.

We both know the physical and emotional load of being a family carer; we have been in that role a number of times, three times with people with dementia. It is challenging, and we have a lot of guilt over decisions we know, in reality, we had to make.

In fairness to highlighting another side to his words, I do believe that people with dementia are set up to become victims and to expect to be taken over from or to ‘give up’, and our families and carer or support person are set up to become martyrs, by the Prescribed Disengagement dished out to them upon diagnosis. However, recently it has been implied people with dementia do not understand the commitment, passion, love and care that our family support person provides. I object to that, and only say it makes my guilt much worse.

I have been mildly concerned about publishing his guest blog, but after the last few days, decided it is after all, appropriate for my blog. I don’t want to piss anyone off, nor does he, but he is saying it exactly like he sees it.

So from here on, be at least a little wary, my BUB, who I love eternally, is now speaking…

Who are carers really caring for?

by Peter Watt, my Back Up Brain (B.U.B.)

I am a spectator to my wife and her journey with dementia.

It has often amazed me the way that people who loved and cared for a person pre-diagnosis see it as their right to effectively take over a person’s life post-diagnosis.

Like most people when I was a child I was taught not to talk over the top of someone, not to interrupt when someone else was talking and not to tell people what to do. So why is it that as soon as their partner or loved one is diagnosed with dementia this is exactly what people do.

This is not helping the person; it is rude and helping in their disengagement from any sort of social activity.

The person living with dementia can still communicate, it’s just that you (the care giver) have forgotten or are not willing to learn how to listen to them.

I have attended many groups with so-called carers who often tell me how hard it is for them, as they now have to do everything. What they should say is their lack of patience,  lust for control and the person living with dementia lack of ability to stop them has allowed them to have everything the way they want it.

They are removing the person living with dementia from their lives, but they would like a pat on the back from everyone for being such a martyr.

Well not from me.

I’ve had enough of these people ‘pretending’ to be caring when they are merely controlling.

When are we going to learn that people living with dementia have a voice, in fact the most important voice the voice of the lived experience.

They are the experts; not the researchers, doctors, associations or carers. All of these people need to support the person living with dementia, in fact must demand the inclusion of people living with dementia.

Giving up all this control won’t be easy, given that Dr. Alois Alzheimer first discovered Dementia in 1906.

We have been telling people living with dementia how to live for the last 109 years, maybe we can now give these people the courtesy of being listened too.

BUB.

 

 

41 thoughts on “Guest blog by my B.U.B.

  1. I don’t consider myself a martyr but Duw it’s hard as we say in Wales – well sometimes it is – when communication skills have vanished completely as has happened with my erstwhile journalist, broadcaster and commentator partner.

    • Thanks for sharing here Beti… and glad you don’t feel like a martyr. I was chatting to my husband about your comment at breakfast, and we both agree it is going to be much tougher going for him down the track too 😦 stay as well as you can xox

      • Yes you ARE lucky. I am divorced, no children. My support community is far flung and mostly online, partly because of the fact that I lived as an expat for close to 20 years before returning to Canada to be live with Mom in 2011.

        I have to plan for my own care, not an easy task, and one which I’m starting on now. I want to try to avoid being in the kind of facility where my Mom was placed against my wishes – the “care” there is institution-centered rather than person-centered.

        The challenges I face are not unique. Women live longer than men, more are alone in senior years. Who will care for all the aging single women many of whom will get dementia?

        It’s a huge societal issue, and a women’s issue too of course…

      • Indeed, I do feel lucky most of the time. In a strange reversal from your comment about me being bitter, which I’m not (annoyed often, bitter, never), you sound bitter in this comment, and not at all happy with your ‘lot’. But the issue of people with dementia who live alone is huge, and as you say predominantly women, just as nursing homes are mostly full of women. My father in law on occasional found it infuriating he had not mates to go to his shed with, and on the other days, loved the attention of so many women!

      • Hmmmm. I didn’t say you were bitter. I think you must have me confused with Lisa…easily done as you have a lot of comments to manage!

        I am not at all bitter. I’m simply stating the facts. My destiny will unfold as it will. I have both joys and sorrows every day, and I am deeply grateful for the amazing life I have had and continue to have. I am privileged in many ways.

        I am angry however. I’m angry at the broken health care system we have here in Canada. I hope you have better in Australia. I’m angry at the way people with dementia are treated by the system we have. I’m angry that my mother is sedated for behaviours that are the result of the way “care” is delivered and the environment in which she now lives. She deserves better. I’m angry at the injustices I see I see each day. And I am highly motivated to be an agent of change, just as you are.

        But no, I am not bitter, not all. And I’m thankful for that too.

      • I hear, and feel your anger Susan, and it is no better here in Australia except in very small pockets. Sadly. And sorry I got you confused with someone else in my comment. The facts are not always rosy, but always worth telling, good on you for continuing to speak up.

  2. What a powerfully expressed piece of writing Pete – it certainly has prompted a huge response. Your comment is a salutary message to all family carers and, indeed to all of those who give support to people living with dementia. In fact yours is a message to all those who provide support to anyone who needs it. Too often family carers and support workers and other professionals who work with people who could do with a little support to get along with things, forget the central right of the individual concerned to self determination and self sufficiency – to life. However, as the comments that your guest blog attracted point out, there is a significant number of family carers, husbands, wives, daughters, sons and other family and friends who see their role as you see yours – a partnership, a back up. As some other comments point out, there are also personnel who work in support environments who see their role as one of support; doing with not doing for. Other comment points out there is a role for education for carers so that they can see that there’s another way to do things. Your words should be well listened to Pete – you have much to say. Continue to piss people off; maybe it’ll make them think; maybe it’ll make them think enough to change the way they approach things; maybe it will get them to help the person actually living with dementia to LIVE until they die.

  3. Why do people get annoyed when they hear comments from someone who has had great experience – whether from a viewpoint of having this dreaded disease, or from a carer’s viewpoint? Yes it is difficult and frustrating for us as carer’s, but we have to listen to our loved one we are caring for, even though it might be confusing when they are trying to state something. Well done Peter for offending people – and who cares if you have? The message needs to get out there. I am probably equally guilty of doing things for my husband, things that he could still do, but I shall try to force myself not to from now on!! Wonderful to meet you both a few weeks ago for coffee. Take care xxx

  4. Well said Kate and Pete. What you both expressed was the truth and came from the heart and I think you are both wonderful people. This post struck a chord with me. I always encourage my staff to stand back and allow the residents living with Dementia to do things their way but be there to help when needed. The residents also teach me on a daily basis. One lady in particular loves to dance and wanted to dance with me. I told her I did not know how to dance, so she taught me some dance moves and I saw the happiness on her face. It was a wonderful moment. xxoo

  5. Very well stated! As a care giver I have felt as though I have walked a fine line between being helpful and infringing on my mother’s independence. In our case, the ability to candidly communicate was a huge benefit. She had no trouble telling me where to get off when I over stepped! Once again, thank you for sharing your lives so honestly.

  6. Thanks to both of you.
    Pete, I have been SO angry recently, having decided to join a few “carers” FB groups to see what kind of education is needed….and OMG, the martyrs, the “married for 50+ years and now he’s useless”, “they do that when they’re dementing”, etc.etc, let alone ignorance of entitlements, refusal to consider respite, lack of knowledge of dementias generally.
    May I post this to these groups, with a few comments from me?

    • Of course you can post this blog… and this is the main reason neither of us join in support groups, too negative, and for me, too insulting. Thanks as always for your support. I always feel uneasy posting things against/about any group, as there are always WONDERFUL carers (or whatever group in the blog)… like YOU, respectful, enabling, empowering… LYNDA HENDERSON… love you to bits

  7. Hi Kate and BUB!
    thanks so much for sharing what needs to be shared. For years I’ve been wincing at the inequality within relationships where one partner has a dementia. many couples fall into it unwittingly, unaware of how the presence of a dementia can impact upon the dynamic of a relationship – and control is a massive part of that. we can make a tragedy or triumph out of any situation. Many carers I have met have almost made martyrs of themselves, taking over everything, thinking for two people and disempowering their partners, so they can subsequently ’empower’ them occasionally at their convenience!
    I’m currently right in the middle of a piece of work as an associate of Innovations in Dementia leading the ‘Getting Along’ project here in York. It’s addressing all those antagonisms that remain unattended between couples and looking frankly at the issue of control. there have been some great early outcomes and I shall be twittering stuff and links to my blog so do keep a look out
    best wishes
    love reading your (and BUB’s) stuff!
    Damian Murphy @elhijodevera

  8. Hi Kate, my husband Sam and I have just read your Blog together. We both agree fully with what you say. We also looked after my grandmother with dementia but let her do what she could until she was unable to do so. My dad also had dementia but he was independent until he died of lung cancer I used to be quite shy but since diagnosis and getting over the shock of this I have now become very outspoken and confident person who has stood up in front of many people and spoke about how it affects me. My husband comes with me and he supports me when I loose train of thought he will say to me ” you were saying this etc ” this helps me when I get frustrated. He never takes over what I can do myself. I hope you don’t mind but I now call him my BUB as it is very appropriate. We laugh together when I make mistakes as laughter is better than either of us crying. We are still a partnership and keep the vows we said when we got married. I’m really glad your husband has written this as my husband stopped going to the carers group because he was fed up of listening to people moaning about what they had to do for the person with dementia. this is one for you Kate we call them CRAFT moments, Can’t Remember A Flipping Thing. Or something a bit stronger. xxxxx

    • Thanks Lesley… I am glad it has helped you both, and am DELIGHTED you are using the term BUB! After I talked about it in New Zealand in 2012, many of the carers groups started using it as well. I have called them CRAFT moments too… hahaha, using the ‘something a bit stronger’!! xox

  9. As a now “Residential” carer I fully agree with your b.u.b.! Friends used to querie at how much I encouraged my husband to do but if he was happy, I was happy. So what, if he was a bit slower, going the “wrong” way to the shops or gave me a tea towel instead of a cup. Did it really matter, no! What did upset me was when unfortunately we had no option except Residential Care, he lost any choice, was not consulted and was expected to do “what I say, when I say it” by staff! Make sure both your voices are heard, it is so important.xox

  10. Hope this article from B.U.B has been incorporated into your book Kate…people need to read what he has to say…great piece.
    I always remember when my dad had become a quadriplegic through Arthiritis, all the so called professionals would talk to my sister and I and ignore him, he had full faculties just a body that was RS! We had to keep telling them to talk to him not us..

  11. I LOVE your husband! His is the Voice we should take note of, with regards to how carers treat the person living with dementia. When diagnosed , they are not all of a sudden struck mute, nor do they suddenly become mindless bodies, SO WHY do people around them take over and take charge?

    I understand that it is often ‘easier’ to do things how the carer wants them done, but, the person living with dementia is STILL LIVING, and should be participating, not just shoved to the sideline. I work in aged care and I encourage the people living with dementia that I work with, to do things, at least to give things a go, often they succeed and it might take longer to get that shirt buttoned or the hair combed properly, but you can see by the happiness in their face how much it means to them to do things for themselves. I get wet, saturated, because I give them the shower head to hold, whilst helping them with a shower. They spray it all over the bathroom most times, including all over me, but I am just so fulfilled with their enjoyment, they can run the water over the bits that they want to, for as long as they like, instead of me standing there with the nozzle……

    I hope that people hear your husband’s message and take it at face value. He is not being weak by ‘letting’ you do things for yourself. That is empowering you, to live your life, it is your life, after all.

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