“Love is what you go through with someone” – James Thurber
Unknown saints quietly work their magic in homes across the country, often exhausted and sad and frustrated, but choosing to love and care for those whose lives have been bound up with theirs, despite often being misunderstood, lashed out at, and finally not recognized at all. They are the loving and tireless caretakers of spouses, siblings, or parents with dementia.
I hate that word, “dementia.” It has such strong connotations of insanity, and yet it is not really insanity as we think of it in popular culture. True, the person with dementia is “out of his mind” to the eye of the observer; but the causes are solely, purely physical: there is as yet no hope of recovery from use of medication, and – because there is no psychological element – there can never be hope of help from psychiatric treatment. I would just say “Alzheimer’s,” which doesn’t have those connotations, but all dementia is not Alzheimer’s, as my father’s is not; different causes exist, and the progression is not exactly the same, and it seems to matter to be precise.
“Vascular Cognitive Impairment” is his condition: dementia caused by a long series of “mini-strokes” – TIAs – that in themselves don’t leave the kind of lasting damage of a major stroke (the typical loss of muscle use, for example, on one side of the body), but over time damage the brain so that dementia occurs. (They are also likely precursors to a major stroke, of which my grandmother, Daddy’s mother, died when she was 90; Daddy will be 89 this summer.)
Dementia begins slowly – perhaps a struggle with numbers or more forgetfulness than comes with normal aging. But its progression is inexorable, and it is surely one of the most painful processes to watch a loved one endure. The puzzled look of a spouse who doesn’t seem to know you; questions like “Do we have any children?”; remarks about “my first wife” when you have been married for 63 years . . . The anger and frustration when you must take away the car keys or insist on a certain diet or give reminders to eat slowly or use the bathroom . . . The fear and sadness and shame in his or her eyes . . . The knowledge that this man or woman you love will never be better, and only worse is to come . . .
And yet these saints who suffer in seeing their loved ones suffer continue to love, to remember what was and to assure dignity despite the loss of return. They learn to speak patiently, to bring beauty, to give respect, to elicit laughter as often as possible. They know that love is not what they receive, but what they give, and they give without reservation. When they are weary and longing for a good night’s sleep, they rise without complaint to help a spouse to the bathroom; when they are berated, they give a hug and set aside the unintended hurt; they never fail to say “I love you” again and again, to offer the reassurance of speech and touch so desperately needed by the one who is losing his or her understanding and grasp of reality.
I stand humbled before these quiet, unknown saints and pray that I may learn from them the grace of giving.