Any perusal of the literature about dementia would identify the need for Care Partners’ to secure arrangements for adequate respite. The general view is that time off from being on call 24/7 is vital to avoid care burn out. I want to argue that such an approach to respite is indicative of something Kate Swaffer calls Prescribed Disengagement. It is also an approach that does not sit easily within our attempt to revert to our normal life following Maureen’s stroke.
A few weeks after Maureen came out of hospital I went on holiday with two of my daughters. Because of proximity to stroke Maureen could not have taken up her place on the trip. Maureen’s family came to the rescue and stayed with her, while the three of us enjoyed a week on the Algarve.
I made a tactical error a couple of months ago and Maureen got the message that she had tired me out. I lost the plot completely and said : ‘I needed to get away because I was tired’. When I look back I don’t know what I was thinking of to convey such a message to someone with dementia. What better than to convey to your wife that she had become such a heavy burden that you needed a break before you could resume your caring role. In my defence I would want to argue that tiredness interferes with pragmatic thinking! A morse constructive line might have been: ‘we could both do with a holiday’.
We are still in Nottingham staying with family. What better place to take respite than Maureen’s birth place. Who better to stay with than her brother and his wife. So we lodge in a familiar place where Maureen knows she is loved and understood. That understanding comes from Dianne and Barrie experiencing dementia within their own family. They regaled us with stories of Dianne’s mums presentation for years.
I am not arguing that married couples should behave like siameses twins: joined at the hip until they are separated by the Grim Reaper. Having separate interest is the glue that supports many a married couple. What I am asserting is that the general approach to respite is counterproductive in our case at this point in time: we need to foster opportunities like this one for us both to find opportunities for respite breaks. Now I face a dilemma on this front in ten days time.
I need to visit Coventry and London very shortly. It would not be sensible for Maureen to accompany me on the whole tour. What I need to attempt is a set of words that does not portray the need to escape from carer burnout but some time out to see my own family. The real sticking point will be dementia can lead to all sorts of complications in thinking and I need to be very skillful in my presentation of my trip. If my time out is seen as desertion or elevating the status of my own family then I am in for a rough ride. Such discussion are made problematic when rational thought and logic are dominant when dementia takes hold. Wish me luck with the discussions that are essential in the next few days.