June 9, 2011

The Place Between Hither and Yon

This is copyrighted material and is from a new work called Losing Molly.

Where is she now?

Mom is progressing to the end stages of dementia. Of course any health professional will tell you that is a silly statement, because there’s no way of knowing when the end will come. And it could be many more years.

Mom has been in obvious decline for about eight years, but we’re not sure what she was able to cover before that. She is also someone who suffered from lifelong depression, and has always been somewhat mentally fragile.

Over the last twelve months, however, she has been in more physical decline. Her brain has either stopped signaling her body, or her body is unable to receive information. One cannot explain anything to her because she cannot understand your instructions. This reminds me of when our son was very small and had receptive and expressive aphasia as part of being on the autism spectrum. Except that he would get very frustrated when he couldn‘t understand what was being said. She just accepts it.

Her demeanor is now one of someone very elderly. She shuffles along like a Parkinson’s patient, each step uncertain. Her head and hands shake; she is unable to get out of a chair by herself. And my father is there, offering his hand out to her, and she gently takes it. But she is a chunk, even at five two, and it takes both his arms to pull her up. She cannot seem to contribute or lacks the muscle control to pull up at all.

These deficits make it nearly impossible for her to leave home for very long. A visit last August to my home was a disaster. She fell down three steps nearly on top of me. She has to be watched every minute as she is constantly lost in the unfamiliar maze of my two-level home.

Bowels are always a problem when traveling with someone with dementia. She wants to make a trip to the restroom often, because she cannot remember that she hasn’t gone. Because her eating habits are odd, even with good, healthy choices presented, she is often constipated. As her daughter I have some sort of magical quality. You know right before childbirth many women will experience a large bowel movement.

On the last three trips I’ve taken with my parents among the first comments my Dad has made to me is, “Your mother has been constipated for five days.” I would rather hear, “Hello, I love you” but that’s today’s mantra. So I usually have to figure something out. Once on a trip to Hot Springs, Arkansas, I actually rode all over town on a bellman’s route at five a.m. to buy morning newspapers so I could go with him to the all-night Walgreens for a fleet enema.

Tonight, well, we’re not quite there yet. I'm thinking dried prunes. My brother texted me that she should drink a Dr. Pepper. These are the issues my family of origin discusses. It used to be politics.

So I’m sitting on a quilted bed in the lodge of an Indiana State Park, writing this with the lights from my laptop. This visit is, in theory, a compromise. I see it as appeasement, about the same way Neville Chamberlin appeased Hitler, and we all know how that turned out.

My brother and I both told my Dad in separate conversations that we thought his driving 200 miles to visit me and my husband was a bad idea. When I told my husband this, he threw up his hands and said, “I love having your parents here. She’s just not safe here anymore,” He’s right, but then my Dad said, “I haven’t stayed anywhere overnight outside our apartment for a year and a half.”

Well, last August is not a year-and-a-half but our family is prone to hyperbole, so we’ll go with that.

So the appeasement was that I come to the state park where they celebrated their honeymoon in 1955. This week my parents will celebrate 56 years of marriage. On the Monday after they were married on a Saturday afternoon, my dad started his graduate school program. They did not have a honeymoon until August, and then they came to the very state park I am in right now. They attended a Night of the Stars program where a Park Ranger talked about the constellations, rode horses, hiked and rode bicycles, and enjoyed the American Plan dining in the same room where we had dinner tonight.

Twelve of us came back sixteen years ago to celebrate their 40th anniversary. We rented rooms in the lodge and hosted a party at a shelter house. The evening was wonderful, and we ended it by having a sing-a-long, something a million years I never would have imagined my family do. We’re not much of a musical family, so it was bad singing, except for my husband’s rendition of “Back Home Again in Indiana” which brought the house down.

So Dad announced that he and mother were coming here since no one wanted them to drive to my house. This drive was half of that drive, but they would be here without help or resources. So I volunteered to come up. When I decided to freelance from home, this was one of the reasons/benefits. So that I could do things like this. I spent the last thirty years in healthcare watching families make difficult choices with regret. Especially in the last year when I work in home health care, and watched people make decisions under duress, did it reaffirm that I want to have no regrets when it comes to my parents, who have given me so much.

So here I am, at the state park, typing on my little computer, while my mother and father sleep next to me. Mom talks loudly in her sleep, shouting things out in a voice that doesn’t sound like her regular voice. Occasionally I will hear her shout her sister’s name, which again makes me think that wherever she is, it isn’t now. Her sister lives in Massachusetts and is in good mental but poor physical health.

Today we drove around the park and walked around the park. We admired the bridge constructed in 1934 by the CCC. We went to the Nature Center for
“critter feeding time.” The Park Ranger brought out a four-foot black rat snake for a demonstration and asked anyone who wanted to touch it to raise a hand. Mom and Dad both raised their hands, and without blanching or batting an eye, Mom petted that long, two-inch in diameter, awful snake. She followed the Park Rangers instructions to rub with the scales and not against. Dad finally had to remove her hand from the snakes belly because she was getting into it so much.

Would she have done this if she was in her right mind? I think not, as I don’t even remember her dealing with a mousetrap when I was a child. The first winter we moved into the house they build, mice were attracted to the warmth and the house wasn’t fully sealed for awhile. Who is this person who wants to touch a long, slithering, woman-hating beast?

Tonight we enjoyed a nice dinner in the dining room, and then went outside for a walk. Even two hours north of my home, even in the 90s, the humidity level is clearly less and there is not the pollution the Ohio River Valley has keeping the ozone down where I breathe it in. We had a nice walk and then came upstairs and my Dad wanted to talk. I know he is so lonely because it has been at least four maybe five years since he has been able to have a real conversation with his wife.

He talked about the NBA playoffs and why he hates the Heat, and about a book my husband gave him on George Washington. He talked about the little Dunkard Church he attended when he was doing his student teaching, and how he chased the minister (who was also a farmer) was back in a field to talk to him about whether he should marry a Lutheran or not. He told me about how people in the community took “teachers in” because there were no apartments in rural Indiana, and how his first landlady couldn’t make his food and he had to find another place within a month. He enjoyed the second family tremendously and stayed with them all year, but he said he had to sell himself to them because they really didn’t want to take in a young man.

I tried especially hard to listen because many of these things he had never told me before and they are treasured that need to be locked up somewhere and kept forever.

Tomorrow I am going to drive them to Bloomington, Indiana, home of Indiana University, where my mother attended college. We’ll have a “tea-room” type lunch as my father said on the town square. We’ll drive around the campus, and hopefully mom will be in the moment enough to remember some of her life there in the early 1950s.

When we get back from Bloomington tomorrow afternoon, it will be a sublime experience because there's a Harley Owners Group (HOG) ralley here. The bikers have started to arrive. It's been my lifelong dream to attend a HOG rally with my aging parents. No, I don't mean Durocs like at the 4-H Fair. When talking about this, my dad and I said that neither of us had ever been on a motorcycle. Then Mom popped up and said, "I have, when I was a child." That was a new one for us. How knows? Maybe she'll take off with the guy with the long cornrows wearing the orange HOG shirt tomorrow? He has a sidecar.
Dementia is such a funny thing. Today she could not figure out how to open a Reese’s cup candy bar, yet she noticed my shoes were untied and told me to tie them. She has tremendous word find problems and might substitute the word “mountain” when she means to say “medicine.”

Yet I brought a stack of pictures that my cousin Ahmet sent me, and one of them was from the late 1930s. She identified every person and told a little about the picture, and had this attitude like she couldn’t believe I was excited that she knew who was in the pictures. I often think that she is in another time and place, and I think she is in her childhood somewhere between 1938 and 1946.

Families have stories that grow over time like Pinocchio’s nose. In my family, the story of Uncle Quincy’s evildoing is legend. In this special picture, Uncle Quincy is standing behind my mother with his hands on her shoulders. He’s a very good looking man, and wearing a well-tailored suit., I sent my husband an email at work and he wrote back and said, “Where is Uncle Quincy? I don’t see Uncle Quincy in the picture!”

You see, Uncle Quincy died before we arrived on the scene. But in the family lore, Uncle Quincy has been presented to us as Snidely Whiplash, that evil foil of Dudley Do right of the Canadian Mounties. I always envisioned Uncle Quincy twirling the end of his long dark moustache.

When I showed this picture to my mother today, she grumbled and said something nasty about Uncle Quincy. Whatever happened I will never know, but she was clear about her feelings for him. I don’t ever want to exploit her, but I do think leading her in that direction is not a bad thing. That is where she resides, in a place between the hither and the yon.

I grew up with a fairly Protestant view of the afterlife, but I have always wondered if there are not other planes between here and there. Where are the angels? And all the people in our lives who have dementia who are not quite with us? Where are they now?

For my mother, it is a happy place. She is very childlike, wanting to pat my hand, and touch me. I am so aware by her very presence how much she loved me. Because she experienced so much depression, there were times in both of our lives that I don’t think she was capable of expressing that. I know that on some plane it is a rich gift that my mother can tell me to tie my shoes so I won’t trip over them.