There may be saints among us, but I am not one of them.
One does not usually associate the words lucky and Alzheimer’s Disease. But within the world of almost six million North American families struggling with the emotional and financial costs of this terrible disease, I am lucky in many ways.
Lucky, in that although my husband can get irritated, he has not exhibited the rage that is sometimes reported. Lucky, in that I don’t have to juggle caregiving with a job. Lucky, in that he still recognizes me. Lucky, in that there are resources that permit me to keep him at home with some part-time help — although it is frightening how fast one runs through those resources! And above all, lucky in that I come to this role from a great marriage, rich with good memories that are a great source of strength.
What I wonder would one do, if the marriage wasn’t good? What if your partner had been abusive, or betrayed you? Where then would you find the grace and generosity of spirit to take on duty? Even with my strong feelings for my husband, I sometimes find myself wondering how long this can go on — if I didn’t still care about him, if we didn’t share a foundation of love and laughter, where would I find the patience? If there are saints among the caregivers, the partners who rise to this are surely candidates.
I am also lucky in that by the time Alzheimer’s claimed my husband, he was an elder statesman. While one has to regret that his last years on earth are spent in this manner, there is some comfort in knowing that he lived a full life, on his own terms, with nothing left on what Hollywood calls ” the bucket list”. And I, too, am at an age where, as lonely as it is, I am not sacrificing anything. I’ve lived a good, happy, and productive life. I love, and I am loved. This is just another chapter. But, if we had known — and oh, who knew what a big word “if” could be — if we had been given advance notice of the disease, we might have taken one last trip, visiting old friends, and old haunts, retracing our own footsteps, consciously celebrating the time we had shared together. But, wishing for that is simply greed, what we had was more than enough.
So I think of the other families, where Alzheimer’s has claimed someone still in the midst of life, perhaps before they had reached their potential, before there was time to create some financial stability, let alone forge a memory bank like ours. How do those partners come to terms with such a cruel fate? If there are saints among the caregivers, they can be found here. And what of those where there are absolutely no private financial resources? How do they cope? It is beyond imagining.
And what of the children, asked to take care of their parents? Drafted in mid-life into the role because he or she is an only child, or the one who is geographically the closest, or the only one who doesn’t have a job, or the one everyone always looks to? This calls for putting one’s life on hold, often for years. This timing of AD causes additional pain in all directions — no parent would knowingly ask that of their child. I certainly would not want my son or daughter to have their lives interrupted for this. And while it might be ennobling in some way, it is still life, interrupted.
As if that isn’t enough, what if there are unresolved issues between parent and child? To be asked to care for a parent whom one does not like, or one who is perceived to have judged us, treated us, unfairly? Abused us, emotionally or physically? Can we care for someone if we don’t care about them? These are the very real side affects of Alzheimer’s – reaching out in endless circles to cut off lives beyond those of the patients.
I ask a lot of questions, for which I have no answers. Perhaps some of you do.
What I do know is that we all share in the knowledge that I underlined in an earlier blog — Alzheimer’s is a disease of the brain that is paid for with the currency of the heart.
Joan Sutton’s columns are also available on The Huffington Post.