"It's a living death." That is what a woman in a BBC interview called living with her husband, who has dementia. She described the loss of the person she one's knew, who is physically still present, but in so many other ways has departed. And I wonder to what extent the dementia of a loved one can also become a death by proxy for us.
While we do not have the disease, our own lives can become overshadowed and change. We may lose part of ourselves (hopes, aspirations, freedom, love and support) and a level of being care-free: without having to worry, without having to care for another. In the extreme, someone else's change in life circumstances (like cancer or alzheimer's) may feel like we move into the valley of the living dead.
What can we do? There is no easy answer. Life can be unpredictable and brutal. Thinking and talking about the unthinkable can help break the taboo, that so often keeps us imprisoned in our own fears and stops us from realising, that what we feel is very difficult, yet normal. We need to come to that realization and accept it before we can lift our spirit.
Perhaps as a society we have got better at talking about disease and death. Just take a look at recent campaigns raising awareness of bowel and bladder cancer.
We make wills to prepare for our death and we make living wills indicating what kinds of treatments we may not wish, should we become unable to make or communicate such decisions in the future. This is about being prepared, having choices and a say in our lives (and our deaths).
I wonder how many of us take this mindset into our homes and conversations with family and friends? Perhaps we discuss or write down wishes for our funeral. If this has happened to you, then you will know, how reassuring and helpful it can be to have been given instructions for that difficult day. The knowledge that "s/he wanted it that way" can make all the difference.
But do we discuss, what might happen in the case any of us become seriously ill, need care and no longer have the capacity to make decisions (mentally or physically)? Do we discuss with our partners, parents, children, other relatives or friends what we expect of them, should we become ill? Do we give them and ourselves a chance to talk about our worries (real and imagined), if such a fate should befall any of us?
Do we avoid such conversations, postpone them until we are older, or get ill, or do we believe we are going to be spared? Do we believe thinking this way is pointless scaremongering?
I don't think it is. Done responsibly and constructively, thinking these possibilities through for ourselves or discussing them with others can help us actively manage our fears and avoid denial, should we find ourselves facing the reality of illness. It can also be a source of strength for the one, who may need to take decisions on our behalf.
Yes, it does take courage and determination, and is not exactly the ideal topic of conversation for Christmas lunch. Perhaps in the new year...
MA (Couns.Psych.), Reg. MBACP (Accred)