Monday, July 25, 2011

Between Fine and Dead

Yesterday I listened to a podcast on the wonderful radio program called “On Being.”
This one was an interview with Jane Gross  who created the “New Old Age” blog in the New York Times about working with her aging mother, and who ultimately wrote a book about her experience.           .
This podcast was called  “The Far Shore of Aging”.            .

I was taken with this podcast, because it reflected so much of my own experience with caring for my parents up until each one died – my Dad, in the summer of 2007, and my Mom, in the autumn of 2010.

One of the lines that struck me was her observation that those of us who are middle-aged don’t think much about the space between “fine” and “dead” until we are in that space with our parents.  How true that is!   She also said that we never know how long that space will be, or what will be contained within it. 

It made me think that my parents were “fine” until they reached their late seventies. Then, my mother’s eyesight and memory began to go, but slowly. They were living in an apartment by then, still assuming that they were fine.  However, my father had started to do the cooking and the cleaning because of my mother’s macular degeneration.  The crisis came at Thanksgiving the year that  he was 83 and she was 82; I was at home visiting when it happened.He developed the symptoms of what was  prostate cancer and had to have a catheter until his surgery. He became depressed over this, and asked me to “get us into Emmitsburg.” This was the nursing home located in the large house where I live.  I told him that they weren’t sick enough to get in that nursing home – but asked him if I could look for an assisted living place for him and Mom.
Blessedly, he said yes.  Thus, he spared me the agony that some of my friends have endured – parents who refuse to leave their homes, no matter how disabled they become.

So, in the summer when he was 84 and she was 83, I moved them to Baltimore , into the assisted living part of the Little Sisters of the Poor’s home for the elderly.  They loved it there. It is a beautiful place with lots of big trees and gardens surrounding it, and is all on one floor with long corridors and wings, and smaller units thoughout. Though they had always been homebodies and fairly non-social, they both enjoyed the social activities and made friends with the other residents. 

This went on for almost two years, but they were both gradually declining. Especially my father,
Who developed Alzheimers. I won’t go into all the details, but he had a personality change, began to have trouble with tasks that used to be second nature for him ( like counted cross stitch)
And began to display distorted thinking. The crisis came when he went AWOL with their car
And was gone all day on a snowy February weekday.  The State Police found him up in West Chester, getting gas for the car, and cheerfully thinking nothing out of the ordinary had happened.  I had to get someone to drive me to West Chester, and then get him and the car and drive him back to Baltimore.  After that, the Little Sisters told me to take the car and not return it.  That was one of the worst times for me.

When she was 86 and he was 87, medical emergencies caused them to be moved into the skilled care part of the home.  The sisters and the nurses and aides could not have been more loving and skilled.  Then I began the horrible process of applying for Medicaid for them. That involved months of “spending down” their money, assembling the paperwork, filling out the applications, etc. The social worker at the home was very helpful, but the caseworker for the State of Maryland was so awful – cold, unsympathetic, and , to me, downright cruel. Eventually they both qualified, so that the home could get the funds they needed to pay for my parents’ care.
While I was going through this, I experienced huge amounts of anxiety and stress… which took its toll on my own health.  I was working full time while all this was going on as well -  but I still was more fortunate than many people who don’t have their parents in a care-giving facility, and who have to physically care for their parents and maintain their parents’ homes.

Again , I won’t go through the description of all the incremental losses. He died at age 93; and she died at age 95, both , very peacefully, and in a place where they were well cared for and well loved by everyone. 

That space between “fine” and “dead” lasted about fifteen years for them and for me.

As  Jane Gross said in the podcast, the adult children then look at their own lives and wonder how long that space will be for them, personally.  I know that physically I have already left “fine” but am in “mostly fine” with five medical crises behind me. I see some of my peers walking with canes, and am glad I still have limber limbs and bones and back.

It is thought provoking, though, to know so much life is behind me.


Amalee Issa said...

Wonderful post, Anne.


Mary McElveen said...

Thank you for steering me to this. Sometimes I think too many of us keep all this to ourselves, when others would benefit so much simply from knowing they are not alone. My mom is in an 'independent living' portion of a facility in Baltimore, but she is independent only because we all visit regularly and do things for her that she can no longer handle. I know there will be a time when she will make the move to assisted living or full-time care...but 'sufficient unto the day...' Thank you again!