Many 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.