Being a caregiver for someone close is like being a resident in a war zone. Ok, that’s a bit of an overheated simile but there are similarities.
First, of course, is that the future is unknowable and so the only way to survive emotionally is to learn to manage your expectations i.e. live without hope except for a painless and relatively graceful end.
Second, other people without similar experience just cannot understand the breadth of impact. Like real soldiers can be distinguished from poseurs, in the online support groups professional caregivers are, unintentionally, distant from the real damage; their advice and statements don’t encompass the underlying pain of having a loved one be affected.
Lastly, there is invisible damage. I can’t even joke with my wife in the good times without thinking back about how much she has changed and how today will probably be better than tomorrow.
But that is the surface, the obvious disturbance.
The real potentially, lasting damage is to the caregivers’ beliefs.
I don’t mean beliefs only as one’s adherence to the existence of a supreme being with some day to day influence, although I can see how people with religious convictions can be really challenged by the continuing evidence that, if a supreme being exists, that being really doesn’t care enough about how we feel to intervene in this course of disease.
No, I am referring to the other beliefs each of us has in varying degree to various elements in our life – beliefs in institutions and organizations, belief in other people and belief in oneself.
Yes, I can accept that, regardless of the fact that people have been studying this disease for a couple of decades, there is no treatment, none, zip, nada. Too often, if I tell caregivers my wife’s diagnosis, the level of real understanding is trivial. So, except for a prescription to manage signs or symptoms, I’m on my own with this.
It seems that many or most caregivers suffered from the loss of contact, the increasing isolation.. Friends, and even family, seem to fade away. What I have believed to be strong ties have turned out, in the face of disease, to really not exist.
And the last, most painful of all for me, is the realization that my ability to assess people and relationships was not what I thought. So much of my feeling of personal security in my life was based on my faith in my ability to judge potential friends.
When my ability to assess people and judge them as friends was destroyed or damaged, then the comfort of security drained away and the world seemed a much more empty and lonely place.
Thanks for reading. I would appreciate any comments or if you mention this blog to any of your friends or relatives who might benefit from reading one man’s perspective.