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’. In his first blog he described the support provided for those affected by dementia as a dowry!
Part of my wife’s dowry, contributed to from many sources, was the strong recommendation that she should keep her independence as long as possible. A clear warning against over protection. Who could argue with that?
This then became my central coping strategy, but I’m afraid it didn’t last long. I soon found I had little choice other than to stage successful bids firstly for some and then more work in the washing, ironing, cooking and cleaning departments. Later I became involved with dressing and bathing. All these were causing stress and upset that outweighed the objective of independence.
Maybe this loss of independence was hastened because my second wife also had macular degeneration/glaucoma/cataracts, in-growing eye lashes and had long term anxiety problems. She was prone to fall because of balance difficulties, became tired very easily and always seemed to feel cold. So while dementia might and does present its own difficulties and complicate other matters it is certainly not on its own. All these, of course, in turn, conspired to block independence, and produced a complexity which I have found is not always appreciated by others, to which the sometime ‘invisibility’ of dementia might be contributing.
I’m sure that this accumulation of problems doesn’t make my wife unique, for dementia often seems to have many bedfellows, which in her case were present before dementia joined them. We do still try hard to protect and even advance her independence. This, in reality frequently becomes a shared independence, requiring my presence and on the basis that so long as I do this she can do that’ ‘. This works very well for us.
The second part of her dowry of which I particularly took notice was the maxim, ‘They (i.e. those being cared for) are all different’, perhaps emphasising the importance and need for each Carer to find his/her own way of caring. As all Carers and all relationships are also all different, this seemed to add weight to the advice.
There obviously isn’t a one size fits all model and undoubtedly as Carers we do need to be working towards our own personal prescription of caring, but until this evolves I do wonder if it wouldn’t be helpful, even essential, to be more precise than the pick and mix approach provides? Whilst this might eventually suit our individual taste and need, the matter of finding our own successful approach is too important to leave to chance. This can mean it might never even be sought nor achieved.
A Starter Prescription offered to all new Carers might be of great benefit. I feel sure that enough is known about caring to make this a viable proposition and would result in each carer being offered a basic toolbox of indispensable ingredients for a journey into the unknown, providing a firm foundation for individual carer development.
In the absence of such early and stronger guidance, I found myself floundering for a short while. After some struggles it became apparent to me that all I seemed to do was react to my new wife’s new ‘odd’ behaviours and I was not always reacting in a good way. Even the tone of my voice betrayed irritation and frustration. This in turn elicited a response which I didn’t like and didn’t want. The potential for marital disharmony was high. (Thankfully my wife has forgotten this stage!)