July 14, 2012 — You have not loved someone until you make love all night to “Nights in White Satin,” the Moody Blues’ song; until you read pages of lyric prose to each other from the great classic novels; until you spontaneously drink long and deep from each other’s eyes; until you awaken in the middle of the night, lips wet from a dream kiss. This passage is an ode to a friend.

I saw the leaves beginning to change color as I gazed upon the trees lining the road stretching ahead, when at my age I began caring for Emma. I faced then my barren chances to encounter amid the fallen leaves of my life this kind of love again.

Other kinds of love exist. That of caregiving is one.

The most stressful aspect of caregiving is that of dealing with the healthcare agencies and the healthcare aides they send out. I have said this before. So often, in caring for Emma, I was groping around in the dark. I stumbled often. Emma simply fell: I ran and got neighbors to help pick her up. I, the unpaid sole caregiver, often found no response of help from state and healthcare agencies. There were days when I told healthcare aides to leave and never come back, days when the aides left Emma alone for hours without telling me.

Today what I did then seems like a dream. I reflected on this with my Hospice chaplain when she visited two days ago. At the same time a friend in my Linkedin women writers caregivers discussion group told us that presently her problems taking care of her momma were compounded by the healthcare agency and the caregiver they sent to work with her.

My Hospice chaplain reminded me of the role I have played throughout my lost decade: “You are the Lion at the Gate,” she said. Right. As caregiver you don’t think of that all the time when you are in the middle of it, but you are. There is no time to relax, you are constantly on guard, constantly deflecting, correcting, reorganizing, constantly on the phone sharing pieces of your mind; I constantly had to listen to the sing-songy, “Well, now, Samantha … you have to understand that — blah, blah, blah.”

I told this to my discussion group. I was overwhelmed with their response.

One, a social worker who just completed a book with three colleagues on the history of caregiving, said, “We’ve put in every chapter of our book that professionals MUST listen to carers, they are the experts. And you’ve just put that in a nutshell. I think that is a brilliant piece of reflection and a real teaching tool.”

Another, in Canada, said, “Like wow! That’s the kind of thing needed everywhere. We caregivers are always expected to do it all for free and yet other people were paid pretty good money to look after my parents.”

The social worker, who lives in New Zealand, is collaborating on a new book with a woman who united two major movements in the United Kingdom thirty years ago, one of which is The National Association for Distressed Gentlewomen. Don’t you just love that one?! A story on the history of the carers’ movement in the UK tells of a woman forced to give up work to care for her father, finding herself in financial straits because of it. She began to connect with other women and local members of parliament. Is this not I, my history? I have been thinking lately of how to connect here with our United States Congress in the capacity of caregiver advocate.

Another story, coming via my social worker friend quoting Tim Cook tells of The Reverend Mary Webster who gave up her work as a Congregational minister in 1954 when she was 31: “In January 1963 she burst upon the public with her proposal for helping unmarried women with dependants. The charity she was to found, The National Council for the Single Woman and her Dependants, was not formally instituted until 18th November 1965. What is breathtaking,” my social worker friend continues, “is the sheer amount of publicity she generated in the early months of 1963,” she and her cause being heretofore unknown. She recognized the value of a sound bite “describing a single woman caring at home as ‘under house arrest’”. Tim Cook published this history of carers on Carers UK in October 2007.

My social worker friend suggested ways to found and publicize advocacies: “Join local and national Carers’ Associations, for one answer. Set up own group through local hospital? which is what we did in the late 1980s. Blog, as we are doing? Advertise, local newspaper. BUT all these things take energy, which caregivers don’t have!” Just exactly. So, now that Emma is gone, she enables me to continue my caregiving through advocacy.

My New Zealand social worker friend referred us women caregivers in our discussion group to Carers UK, a caregivers’ advocacy [many such organizations exist here in the U.S. and worldwide], who reported on their website on a caregiver income bill introduced before parliament, stating “Significant proportions of disabled people feel they can work and analysis in 2010 found that supporting social care users to access paid employment could generate earnings of up to £800 million [$1.246 million] each year, a reduction in benefits spending of £300 million [$467 million] (as well as extra income from tax and National Insurance). Research last month from Age UK showed that the cost to the Government of carers being forced to give up work to care had reached £5.3 billion [$8.253 billion] in lost tax revenues, lost earnings and increased benefit payments.” –Got that? Lost tax revenues. Plus, of course, these unpaid, unemployed caregivers can’t go shopping: they can’t get out of the house, most likely (under house arrest), and even if they could they’d have no money to spend to bolster the economy.

Also, Carers UK report that it is known that carers take a long time to identify themselves —I did: it took a friend to tell me that I was a caregiver and I needed to find help —25 percent took five or more years to recognize themselves. “By placing duties on health and education bodies,” Carers UK states, “the Bill would speed up the identification of carers and allow help and support to be made available earlier.”

“Plan B” Carers UK reports, “—a private pension plan — because you can deduct half of all pension savings from your earnings too.” Wow! Just look at all the benefits my daughter will receive when she cares for me if we enact such a law here in the U.S. I’m just sayin’.

I step down off my soapbox this time without Oscar Wilde stepping in to polish my expoundings. But, then, I turn and there he is.

“Oh, it’s you,” I say.

“I cannot deny it,” he replies. And then he points out my use of too many adjectives.

Declares our Canadian discussion group member, “Whut! I didn’t know that a woman could have too many adjectives, too much chocolate or too many shoes.”

Samantha Mozart