A tribute to my BUB

Screen Shot 2015-07-21 at 11.32.28 amMany people over the last few weeks in the UK have gone up to my husband and said, things like; we know you as BUB… do you have a real name?! Peter, also my Back Up Brain or BUB, is my husband and one of my heroes, and I do have him up on a pedestal for the way he manages physically and emotionally to support me living with dementia, in such pro-active and empowering ways. He has said he feels he doesn’t deserve the accolades from me or others, but other people with dementia, and family carers or supporters of people with dementia often ask us how we maintain our relationship so well, and with such affection and how we have managed to negotiate the often very difficult and confronting mine field of changes in our relationship and our lives due to dementia.

How does he manage to not take away all my power and control, how does he sit back and watch me struggle, and not take over or further disable me?

The first couple of years were tough, and we did not have it working well as we had both accepted and assumed the roles that Prescribed DisengagementÔ ensures most people take on. Perhaps being diagnosed in the earlier stages of dementia and having a lot of insight has helped, or maybe my fiercely independent personality trait and desire to do things for myself for as long as possible, but it was not an easy road to navigate. He did, often, try to take over for me, and initially I not only let him, I thought he needed to, long before it was really necessary.

In the early days following the diagnosis, I allowed myself to be disabled, and as per the service providers advice and education, focussed on my deficits and the fear to the supposed road to nowhere ahead of us.

Being at the University of SA was most likely the breakthrough that allowed us to see things differently and respond accordingly; they advised me to not only see the symptoms as disAbilities to be managed, but to work hard to accommodate the symptoms of dementia, and see them as disAbilities, even as assets, not as deficits.

Being a pro-active type of person, one who has almost always been able to find solutions in the toughest of situations, has been useful. Resilience, discipline and motivation have been imperative. But my BUB has made all the difference, and I barely have the words to say how much it means to me, and to thank him.

Amongst many other personality traits, I am naturally extremely independent, often in the past to the point of being too proud to ask for help in some really tough situations. I have always rejected ‘needing’ anyone, even my husband, as always felt I wanted to live m life as independently and with as many as resources as possible, and that to be needy was unhealthy and unhelpful. Over the last three to four years, this has had to change. In particular this last year or so, I now really need Pete’s support and active help.

Due to some physical disabilities, some completely unrelated to dementia, I can no longer lift or carry many things. I cannot drive, so for example, during a driving holiday around the UK or anywhere means Pete always has to drive. My list of deficits is growing, and Pete needs to manage the money, as I can’t work out the different currencies, and can no longer add or subtract, not even with a calculator.

Even with our connected electronic calendars, I can no longer work out how to add a diary event, and have had to go back to a paper diary, which I often cannot find or have forgotten to add in appointments! I often cannot work out how to set the GPS, or read maps or instructions. I cannot work out how to use new TV controls, and I easily get lost, even in familiar places at home. This does seem, oddly for me, to be focussing on my deficits, but I wanted to highlight just how much help my dear husband has to provide – that I actually need.

My frustration levels are higher than they used to be with many of these things, and having meltdowns is not uncommon. He patiently and quietly puts up with them, rides them out, alongside me, without getting too impatient or angry too often, and at the end of it, insists he still loves me. Now that is one pretty fantastic BUB!

He has never said to me, or to others as far as I know, that he ‘hates being my carer’, nor has he ever said he ‘didn’t sign up for this’ when he married me, two lines we have often heard from other family carers.

I feel very lucky! I love you Peter Watt, and hope you can accept this very deserved public accolade.

41 thoughts on “A tribute to my BUB

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  4. This is a lovely post Kate ……. I’ve enjoyed reading every single word. I’ve appreciated you opening up and telling us what it’s like for you now (I think this is important, because I don’t know you physically and am not too familiar with this type of dementia)

    But I also loved reading your beautiful accolate ……… all well deserved, too! This blog post deserves to be printed out and almost framed 🙂 at leaast you can put it on the fridge for a few weeks so BUB can get a regular reminder of what you’ve written 🙂 🙂

    • I suspect he would hide if I printed it off and put on the fridge!! but perhaps I’ll do just that, so those who do not read my blog, can read it if they ever visit! xox

  5. Yay Pete ! So glad you are there at Kate’s side and she is not enduring this journey alone. It is no small feat what a care giver does especially on top of being a spouse as well. You are a delightful testament to what is right in this insane world and a high five to you as well Kate for letting ‘BUB’ know you love and appreciate him. Seems you two complement each other well. Happy day to you both…. VK ❤

  6. hi Kate
    As I read this a tear came into my eyes I empathise with you it is hard for people without dementia to realise that we don’t want to be dependant on others and if we could change it then we would.
    My BUB must be the twin of yours, he’s there when I need help and sits back when I try to be independent. I like you was a very independent person rarely asking for help, but as things slow down and I can’t remember how to do things or say the right word I have realised how much I rely on him.
    His saying is when we took our vows in church 43 years ago WE said in sickness and in health, good and the bad etc. We need and still love each other this will never change. You are both inspirational people and I really look forward to reading your blog. I have learnt a lot from your blog so keep on fighting. xxxxxxx

    • Thanks Lesley… we both say that often too. In sickness and in health, and we both meant it. I’m so glad my blogs help in some small way, and thanks for sharing with me here, as it helps us a lot too. xox

  7. Thank you Kate, for sharing this very personal insight into a partnership living with and sharing dementia. It is so well written, and is explaining to others on the outside looking in, some of the many tiny day to day things that we all take so much for granted, but people living with the disease can struggle with daily. Peter, you are just as amazing as Kate as her BUB, and you and I both know we do it for the immense love of the person we care about so very much. Not everyone would do it. Love to you both. xx

  8. Thank you Kate this blog and congratulations to your beautiful BUB. I too in the early stages of my husband’s FTLD 17 years ago did too much for him, as we grappled with this new way of living. It is a steep learning curve and each day brings new challenges. My husband had to stop driving suddenly and he drove trucks for a living, so that meant also stopping work, a real grief, at aged 60yrs. Fortunately he has always been comfortable in the passengers’ seat, although he does sometimes tell what I should be doing!

    • Thanks for sharing with us here Evelyn… I too lost my drivers licence when I was 50, and had been working in a regional sales position, driving in four states of Australia! It is such a big country, and such poor public transport, it is one of the worst things about dementia! but, we must move on, and work with what we can still do…

  9. Dear Kate,
    I’m deeply touched by your article…
    Such deep meaning in it. You inspire and empower so many people by what you do, including me.. Thank you for having the courage and strength to make the world a better place.
    Warmest Regards,
    Nadine

  10. Life is a huge balancing act I feel, for both the person with Dementia and the loving Carer/Partner. You have found the “balance” and both have my love and admiration.

    ..

  11. Match made in heaven 🙂 Truly an example of a two-way unconditional love. It is great to have an example of how it can be. Kate, your dementia only makes it more special and gives you both some “meaning to life”. Enjoy your years to come xx

  12. Love bears all things, believes all things, hopes all things, endures all things. 1 Corinthians 13:7. I am not a religious person but this quote is one I have carried with Gregory and me for over 40 years and especially for the last 12! You and Peter make a beautiful couple!

  13. Well Done and Well Said Kate. you and Pete have set the standards for the future. I hope people outside of Dementia can read this too. For anyone caring for a loved one with a life limiting illness, will find comfort and encouragement in this blog. When my late partner came home after his first brain surgery, he allowed me to fuss for a few days, then said “I appreciate what you are doing, but please stop with the cotton wool.” So I did, and like your Pete, I learned when I needed to ask if assistance was required or not and read a mag while he persisted trying. He then felt comfortable to ask if he needed help.
    You are an inspirational team!

  14. Here’s one blog I wish I didn’t read. It is I that am constantly in awe of you. You are amazing. Apologies to anyone reading as it’s turning into a bit of a love fest.

      • He has never said to me, or to others as far as I know, that he ‘hates being my carer’, nor has he ever said he ‘didn’t sign up for this’ when he married me, two lines we have often heard from other family carers.

        Peter is obviously not a hostage or victim of your dementia, Kate, Some carers’ do seem to be caught up in victimology in a sense that they become the hostage or victim of the dementia themselves. How does that impact the PWD? It forces us in the role of the perpetrator, to feel like it is our fault! Kate, your Prescribed Disengagement theory woke me up and touched at the core of how I have been feeling over the past year.
        I can’t tell you what a relief it was (cathartic) to read your work and better understand how I felt and why.
        Thank you, Kate for all you do for PWD! Thank you too Peter!

      • I honestly believe the Prescribed Disengagement, dished up to the person with dementia, and our family carer or support person, is what can eventually turn some people with dementia into victims and our support person into a martyr… it is unhealthy and unhelpful. I’m so glad it has helped you xx

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