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Saturday, September 14, 2013

Jane Devin and Elephant Girl

I love this book. Jane Devins's ( memoir is gritty and raw and painful to read. Her life-long struggle to escape poverty, a poverty she would not experience had she not been so badly abused by the adults around her during her childhood, is difficult to witness, even if only in writing.

For most of my life, people who have heard my story have told me I should write a book about it. Maybe some day I will, but I will never be a Jane Devin. As much pain and struggle as I can point to in my own childhood or young adulthood, I could not help but feel grateful that my childhood was not as challenging as Jane's. and I am filled with admiration for her strength and her ability to survive and thrive and pursue her dreams.

And I doubt I will ever have the courage to change my life the way she has changed hers. I have friends who have done it, stripped their life of materialism and walked away from the constraints and comforts of the stereotypic American work life. I think that takes a lot of courage and imagination.

The world may be full of Jane Devins that we never hear from... How I wish they could all find their voice and we could learn to listen for them.

Monday, September 9, 2013

And now, in the "no duh" social research news...

If you are unfamiliar the conditions faced by lower income African Americans in general, or with nursing homes in poor black neighborhoods in particular, this might be news to you.  But if you had poor Caucasian parents, like I did, who relied solely on Medicaid for their healthcare all their lives, and then for their long term care as well, then your parents probably lived in a Medicaid-only or predominantly Medicaid-occupied nursing home, like mind did.  And if that was your experience, this article will probably just confirm what you already know to be true.  That poor African Americans, particularly because they are likely to rely on Medicaid and live in nursing homes where most of the residents rely on Medicaid and are also African American, receive worse care than residents in other nursing homes.

For the first six years of her time living in skilled nursing facilities, my mother lived in one of the poorest nursing homes in our county.  The facility was on the south side of the city, in a predominantly black neighborhood, and many of the residents were also black. That facility is now operated under a new name and new management, after having gone belly-up a few years ago.  We moved her into a different facility when the news hit the paper that they were in dire straits. But we had been seeing the problems for awhile. Low staffing ratios, high turnover in the social services department which resulted in staff who were not familiar with my mother's mental illness or concerns, difficulty getting administrators and nurse managers or physicians to take our concerns seriously.  The certified nurses aides were the best thing about that facility, but there were too few of them, and they would leave as soon as they could for work in better facilities.

In the new facility, which was still pretty heavy in terms of Medicaid recipients, but had a resident population that was mostly Caucasian, my mother got better care. No facility is perfect, especially if there are a lot of Medicaid beds, because funding and therefore staffing are always concerns. But she was happier, the nurse managers and social workers were long-term employees and very familiar with her concerns and needs. She spent the last 4 years of her life there (until 1 year ago this week), and was much more content. And when it was time for my Dad to be placed in a facility, he requested to be placed there as well.  And he died there (3 years ago this week, actually), and they took relatively good care of him while he was declining and while he was dying.

So, you can see why the study discussed in this article, which analyzed data collected between 1994 and 2004 from over 11,500 nursing homes across the United States, confirms for me what I already knew on a personal level.  That it's rough being poor and old, or poor and old and mentally ill, and it's even rougher being poor and old and African American.

Sunday, September 1, 2013

Letting go of my parents... And of my regrets

It's September, the month my mother was born, the month my parents were married, and the month they each passed away - on the same day, two years apart.

My mother has been gone almost a year, and my father, three. For so many years, I have carried the burdens of guilt and obligation. Guilt for my mother's mental illness, for my parents' unhappiness, for leaving them to save myself as a teenager. Guilt over what happened to me after leaving them. And after years of personal work to let go of the guilt, there was the sense of obligation for their care and well-being as they became more frail and unwell in later life.

In total, I spent twelve years bearing the obligation for that care. Voluntarily bearing it. I complained, I resented, I enlisted what sibling help I could get, when I could get it. After my first breast cancer diagnosis, I was advised to give up some of the responsibility for their care, but no one else was offering to take it on, so I kept going. After my second breast cancer diagnosis five years later, I gave up the responsibility of  being their health care proxy and power of attorney as soon as my sister offered to take that on. When she hinted at my resuming those roles a few years later, I refused.

Although I was not their proxy or POA, because I lived in the same city, I was the one showing up in the ER or nursing home when they had a health crisis. I was the one pushing for my Dad's transfers to higher levels of care when everyone else would have left him be. It was my brother John and I who lived here and visited them both regularly. In my Dad's last year, I read to him every week after he lost his eyesight. And I sat by his side for his final days, watching him die, trying to keep him calm and comfortable.

After Dad died, things got harder. I visited Mom less because it made me so sad to be with her and her overwhelming grief. I spent those last two years feeling both obligation, which I failed to fulfill, and guilt for that failure. Sure, I showed up if she needed me, or if there was a crisis, or if I felt strong enough to bear her sadness, but it wasn't often enough.

Since Mom died almost a year ago, I have been freed of the burden of obligation. At first, I didn't know who I was without it, and then I spent some months allowing myself to relax in the freedom from having to worry about them, resent them, feel responsible for them, compromise myself for them. 

In its place, I have instead been nursing regrets. Regrets for the things that happened to them in their lives, for the things that should have happened but did not. Regrets over things I should have done, or should have done better or more often, or with more sincerity or affection.

I think that in some ways, nursing regrets is just another way of clinging to people we have already lost. I can't ever bring them back, nor can I rewrite history to make their lives better or happier or less poverty-stricken. Regrets don't make me feel better about myself or my own life, or about my time with them. I think they just fill some of the space that used to be occupied by obligation and guilt, and which has been left empty by their deaths.

This morning, as I was walking before my AA meeting, I decided that it is time to let go of these regrets. I need to fill that empty space with something else, something positive, like more love for the people around me, or more confidence in myself and my abilities, or more passion for my work, or pursuing more creative outlets, or maybe volunteer work with people or animals I care about. I think I might feel a little lost for a while without these regrets and the connection that they are to my parents. I will miss my parents more, I'm sure. 

But I am ready for this next stage of my life without them. Wherever they are, if they are aware of anything about the life they had here, I do not want regret to be a part of that awareness. Not for them, and now, not for me.