Derek from Wigan has written about his experience of looking after his wife who lives with dementia. Here, he shares reflections of assuming the role of ‘carer’ – while retaining his role as ‘husband’.
Most importantly, I have learned a lot about kindness. I have always known its importance, but it is so powerful in certain situations: the best of medicines, seemingly able to reach the parts that nothing else can. It should be packaged and sold and constantly available, on tap. (Now that’s an idea!). I can only hope this remains so as the dementia continues to exert its pressures.
Carers too are not immune to the effects of kindness. We too need our share of this medicine, this treatment, but unfortunately there are instances where it is not provided, even occasionally from those who should know better.
I have learned that a build-up of pressures on the Carer can amass so easily, at an alarming pace, akin to a rolling snowball on a mountain. One minute you are relaxing and then suddenly you are being engulfed by an avalanche, with enormous consequences.
Often the pressures encountered are not related to the dementia. We all have personal and health issues, family difficulties, houses that need attention, experience the apparent stupidity of officialdom, or have gadgets that suddenly ‘go on the blink’, and all seemingly simultaneously.
So dealing with issues ASAP to avoid a build-up is now part of our armoury. Putting-off just won’t do. Ignoring such issues soon results in overload, leaving the Carer in no fit state to care. Into this box should also be placed the seemingly trivial matters and the perceived slights and misunderstandings to which those with dementia seem to be prone.
I have also learned that anxiety does seem to have a strong affinity with dementia, acting together two naughty schoolboys (an unholy alliance) who shouldn’t be allowed to play together because of their combined ability together to exacerbate any situation and making it difficult to identify the culprit. Time spent to alleviate anxiety is time well spent, but not easy to achieve.
Keeping my head clear is a priority and off- loading tasks that can be done well for me by others, if willing and able, is absolutely invaluable. Otherwise the load can easily overwhelm.
Dementia does inhabit a strange world. It is a world where unreality resides, but is only too real for the people who live in that world.
It is a world in which memory is locked out, or if it does gain entry it soon departs, causing much confusion. Thankfully a memory of yesteryear is somehow often still present, a real boon.
It is a world in which time has lost its certainty, no longer providing the essential structure and framework for each day. Clocks do still tick but are unnoticed and no longer tell the time. ‘Later’ and ‘Soon’ become subsumed in ‘Now’. This loss of time is devastating.
Communication is a daily struggle fraught with difficulty. Sentences are easier to start than finish and often constantly repeated. Understanding, in both directions, is frequently misunderstood. Communication is a source of much frustration.
A locked-away personality, lacking normal animation, is so difficult for the carer to accept or reconcile with the past. It can still on occasions be prized open, but is seldom spontaneous.
Mountains can suddenly arise from what used to be molehills, making the daily routine sometimes hazardous. Items are frequently lost but not always found, making hide and seek a popular game.
Organisation and Routine are major ‘must have’ tools. Lightheartedness needs to be at the heart of each day. Patience and Optimism are required as never before.
In a sense, for ourselves, it seems to be a world which hasn’t yet revealed all of itself, but will do so in the future in its own time. Maybe this is when I will be introduced to a third wife.
Although this might be a strange new world it is our world. The carer, straddling two realities, is necessarily part of both, which are equally real.
In these circumstances it is perhaps worth remembering that our difficulties must be as nothing compared to the experiences of the dementia sufferer, who can only watch and feel the destructive impact on their life of the the relentless dementia which inexorably gnaws, attacks and steals the very fundamentals of their humanity. What must this feel like?
Notwithstanding this, for the carer life is distinctly daunting and at times seemingly impossible. Without wishing to over- dramatise, life can easily become an emotional roller-coaster capable of producing stomach- churning and euphoria, but perhaps not in equal measure, where the peaks can be scaled by a simple smile, but where the troughs can seem not unlike premature grieving for that which is in the process of being lost.
In this often emotionally charged situation, where even the normally boring tasks of everyday life can suddenly seem to acquire an attractive allure, it is perhaps essential above all else to have a focus, a clear sense of purpose and direction that helps to smooth out the ups and downs encountered 24/7. It can hardly just be played ‘off-the-cuff’. I now see everything in life through the prism of ‘calm, content, cheerful and happy’.
No reflections on the nature and difficulties of caring can, however, be complete without mentioning and emphasising that caring can also be brilliantly rewarding.
What greater pleasure can there be than enabling someone to be calm, content, cheerful and even happy, some of life’s greatest treasures, when without our support this would not be possible? Particularly when, as is often the case, the person we are caring for means so much to us. Such a magic feeling!
(To be continued)