I am always surprised when someone refers to me as a caregiver. I don't think of myself in those terms -- I am a wife, honoring the vows I took so many years ago.
I have had the better, and the richer -- ( speaking of experiences and not money).
Now I am living through their opposites: the sickness, and the poorer -- (in this case both experiences and money: Alzheimer's is expensive).
There are probably many partners who, like me, just step up to bat without adding the title caregiver to their names. Which is why, perhaps, according to Paula Span's article in the New York TImes, New Numbers on Elder Care, the majority of the 39.8 million respondents to a US Bureau of Labor Statistics survey identified themselves as unpaid caregivers to parents or grandparents, while only 4 per cent said they were caring for a spouse or partner.
There are many more of us than that. We just don't call it caregiving. We are, quite simply, doing our duty.
Ah, duty. Louisa May Alcott wrote a poem on that subject that reads:
"I slept, and dreamed that life was beauty,
I woke and found that life is duty".
Duty. It sounds like such a harsh word, rather mean, a bare-bones approach to responsibility. And yet -- and yet -- there can be beauty in the duty.
That is captured in the other version of this thought, this one written by the Indian poet, Rabidranath Tagore:
"I slept and dreamt that life was joy. I awoke and saw that life was service. I acted and behold, service was joy."
But, however we define it, where there is an Alzheimer's patient, there is a caregiver and we are a diverse lot, we partners in this Alzheimer's world. There are those who wrap themselves in duty, taking from it a whole new definition of self. For many, the act of taking care of someone gives their life a meaning beyond anything experienced before.
There are others, at the opposite extreme, who cannot meet the demands.
And many, like me, who muddle along, doing what we can at any given time.
We have created the corollary to the Alzheimer's World -- the Caregivers World. We turn to each other in support groups at community centers, or on line to share insights, practical tips, despair, and encouragement. For me, the internet message boards have been invaluable.
I find the New York Times blog, "The New Old Age," with its broad approach and contributions by various writers and professionals a great source of information. When I want to connect with others who are in my situation, I turn to The Alzheimer's Reading Room. On this site, Bob DeMarco details his 24/7 care of his mother Dotty, addressing every aspect of eldercare.
He supplements his own views with articles on various subjects by other experts and thousands of caregivers write to him to discuss candidly their experiences. Gail Sheehy's book, Passages In Caregiving (Harper), is thorough, thoughtful and especially useful when you reach the stage where, in your own mind, you begin to think of yourself as not just "The-One", but " The-Only-One."
Circumstances vary. Not everyone can give up their job to become a full-time nurse/companion. Some do not have the physical or emotional strength to lift and bathe a partner. Some children live nearby; others are thousands of miles away, managing from a distance as best they can. Some see their role as a calling; others like me, see it is a stage in their life, part of the cycle of loving. We bring who we have been all our lives to this new role.
Few, if any of us, are are born saints. I would hope that we would be generous and non-judgemental with each other and resist the temptation to think that there is only one good kind of caregiver. Except in cases of elder abuse, there is no right or wrong way to proceed.
We do what we are emotionally, physically, financially, capable of. Along the way, we discover the meaning of duty. And, just when we think that it is a thankless role, there can be a radiant smile, the clasp of a hand, a gentle hug -- the beauty in the duty.