My Read of An Uncertain Inheritance - Part 4

An Uncertain Inheritance: Writer’s on Caring for Family edited by Nell Casey

Joanne D. Kiggins in her blog, WritingAfterDark, gave a real review.

I had hoped to only have 4 parts but that's not possible now so I decided to post and finish up with a part 5.

The Vital Role by Amanda Fortini (read February 13, 2008)

I've been really sick only one time in my life where I was so sick that I needed help. I was in the Army and no one cared and no one helped me either so it did not much matter how sick I was or for how long. Once, after I was divorced, I had to have my wisdom teeth removed. Dad and Mom took me to the office and then brought me home. They offered to stay but I just crawled in bed and when the weekend was over I crawled out of bed and I knew that beforehand and told them to go on home and they did. Another time I had an abdominal hernia and was in the hospital for a couple of days. That's kind of different I think and besides I was 10. But really I've never needed or really had anyone be a caregiver for me. I'm not a very good patient either so it's probably a good thing.

Amanda Fortini describes what it was like to be really ill and to need someone to help her. She introduces the enigmatic "J" who becomes a kind of caregiver for her. "J" is not one of my favorite characters right from the start. I prefer my caregivers to be a bit more on the normal and responsible side which is to say not a sociopath. But, I thought to myself, these are New York City folk and perhaps things are just really different there.

I continued reading becoming increasingly fascinated by the description of the illness and the effect it had on the author and imagining myself to be similarly afflicted. I realized how one sided is my brush (is 9 years a brush?) with chronic illness and discomfort and pain and, therefore, how incomplete my own understanding. I wondered if it were possible to really understand the suffering of another person. I think it is not.

Then "J" suggests that if Amanda does not get out of New York City that she will die and I think that's pretty likely true for just about anyone but I've only been there once. But then I know its my own bias about living in such a densely populated place. I am astonished though when I read J's solution is for them both to move to Los Angeles. Inside my mind I was like the guy in the Pace picante commercials except I'm yelling 'Los Angeles" in my head instead of New York City.

I must say that I am familiar with a good deal of J's emotions and reactions towards her self-appointed charge. Not that any of those are particularly flattering but having experienced them myself first hand I recognize their reality. I am respectful of the author's ability to also find them and to write about them. She did a great job observing the caregiver and the loved one.

There is not much that passes for faith. I guess there is none if you omit the vegan and yoga references. There is also no family at all.

I think it is a lonely story.

Planet Autism by Scot Sea (read February 13, 2008)

Sad to say that I understood so well so much of what Scot Sea wrote. His daughter has autism. He does a peculiarly fine job I think of describing the daily grind of caring for her. I suppose I suspected that all mind illnesses might have things in common but actually reading certain of his descriptions and reflecting simultaneously on my own experiences with my Alzheimer's patient was rather sobering. It is funny (strange funny not ha ha funny) what words on paper (or in my case on Kindle) will foment images of past caregiving experiences and then what those images themselves cause to happen emotionally inside the heart and mind.

In my early caregiving days I was lonely and I joined a caregiving email list. Through that list I met a man who, along with his wife, were raising three children with some terrible disease. The children acted out and had many of the autistic symptoms that this author describes. But this disease, and I do not recall its name, was fatal and the children were dying. And it was all the more terrible because it was hereditary and so the parents knew that they had passed it along to their own children. But they didn't find out until after the last child was born. There was a lot of guilt. I wonder about them sometimes. I think the children might be gone now. But those parents were on 24/7/365 and were on welfare, too.

In Sea's account the parents try to work and he does a particularly good job of describing how difficult that is.

There is the story about Holland in this one. Do you all recall it from Alzheimer's? It is more or less like "we're planning a trip to Italy and we study about it and finally go but we end up in Holland and everything we learned is useless and we have to learn a whole new language and culture." I heard it several times in relation to Alzheimer's although I recall now it was said to have originated from autism caregiving.

All I can tell you is that there are some people doing some amazing and heroic things out there.

No faith of any kind here either. Also no mention of extended family. This one and the prior makes me wonder if I am so strangely unique and different to have both faith and family. Or maybe I should say blessed I think.

This story made me so tired. The unending ever repeating part is awful but beautifully conveyed.

The Day the World Spit Open by Abigail Thomas (read February 13, 2008)

This is very well written for me to the point that it was a real page turner (or Kindle button clicker I guess). And again so much of it is familiar to me and I relate so much of it to Alzheimer's even though there are vast differences. But I think I relate everything to Alzheimer's so maybe it is more me than the story.

It is also set in New York City. I wondered if there were no red state authors who had been caregivers. Another thing I related to though was that she had placed an ad in one of those singles deals and Rich had read it and responded and 13 days later they married. She tells about keeping the page that had one circled ad on it. I thought that so brilliantly conveyed so much in such a few words. But I related because when I was lonely I signed up for one of those online services. Plus she was 46 and he was 57 when they met and I appreciated both ages actually.

One day the doorman of their building called (I imagine the image of Jerry Seinfeld's building) to inform her that her dog was in the elevator. She wanted to know where her husband was but he had been in a terrible accident and had brain damage: frontal lobes. We Alzheimer's caregivers know something about frontal lobes.

The operation is successful but there is the soon subsequent inappropriate behavior stage and the pros tell her it is only a stage, oh, and by the way, to expect the recovery to be long and slow. And there are changes of course to be expected but no one knows what. And that also reminded me of Alzheimer's.

So many familiar things to me she writes about. She discusses the heightened sense of detail she notices at all times and how old fears seem no longer significant and wondering where her husband went and the pain of him pushing away her hand in anger and being worried about her little dog on the day of her Rich's surgery and so much else.

There was family in this story but no faith, at least not overtly.

Beautifully written.

The Elephant in the Room by Stan Mack (read February 13, 2008)

Well, we (all of us Alzheimer's caregivers) know about that very same elephant. It is the fact that Alzheimer's is a fatal disease but we never talk about that fact. Some people think it isn't fatal in fact. I've heard them say so.

It is another New York City couple. Janet has cancer and Stan is her companion and lover and caregiver. They come to know that she is going to die but it is not discussed even though it is ever present.

It is awfully nicely written I think and just a lovely story about two people who themselves are rather lovely. They had lots of friends.

Interspersed often are cartoons that convey as much of the story as the words, maybe more in fact. Because Stan is a cartoonist is why the cartoons are there. I liked them. Janet was "a writer of nonfiction books for teenagers." There was something about that statement that struck me as being cute. Maybe it was the great degree of specialization or that I immediately thought to myself "what kind of nonfiction books do teenagers read?"

Stan and Janet never married even though they were together 18 years. He wonders early on if they had married would the marriage vows "in sickness and in health" been any more significant to him. I thought to myself that mere vows themselves make neither husband nor caregiver.

It is a story about living with a progressive illness. It is a glimpse of a caregiver learning to be a caregiver and starting from some place negative of zero. And I related to that. It is also about learning the medical system and all the problems that go with caring for someone who is chronically ill. So much of that I related to immediately. It reminds me of sitting in a valley surrounded by mountains and just over the mountain are an entire ring of cities with all sorts of people that could help but you don't know it because you can't see over the mountains.

No mention of faith.

It is really nice for me as a man to read about other men who are also caregivers.

But a beautiful and rewarding story of love and care.