Thursday, August 14, 2014

The Private Face

I have written about my mother and her growing loss of memory with some hesitation. It took me a long time to put words to this and even longer to share them. My mom is a private person which argued for me keeping this challenge private. My sister is on this journey with me and we have discussed the issue of privacy. Is it better to confront the stigma of Alzheimers by sharing one's story? And what exactly is behind this fear of being public about something that has touched the lives of virtually every one I know.

I think part of it is about our public face and a reluctance to show our loved one at less than their best, to preserve their dignity at all cost. There is also perhaps too much sensitivity to the discomfort of the external world where most are ill-equipped to deal with those who are in this awkward stage of life. Many people begin to retreat from the world when their memory falters. Aware that something is off, they cut back on social encounters. My late father also lost memory, but was not one to retreat from anything. He made his rounds each day to his familiar haunts. Some people were quite gracious as he retold his litany of stories for the umpteenth time, yet I often felt that others expected him to retreat. Perhaps they felt it was a bit unseemly, preferring that he preserve the image of himself at his career pinnacle, like an aging movie star who drops from public view to preserve the myth of eternal beauty. I knew what my father would have said to that and it would not have been polite. Sometimes I thought it on his behalf.

In this world of blogging I write about what I encounter and as an artist I go one step further and paint and talk about those encounters. I use my artwork as a way to better understand my world and to create a dialogue with others. That makes it hard not to address these changes in my mother, the person who has been my hero and role model for much of my life. My sister was the first to shatter that barrier in her blog aptly called Alzheimer's Sucks, But It Is What It Is.

"It is what it is" - a phrase we often repeat to each other. My sister and I share a pretty matter of fact attitude as well as a deep love for our mother. I figure given that, anything we say comes from a place of love and confronts the realities of life. With that assessment I too decided to dive in.

I've been asked to participate in a video that is being done for a caregiver's conference. There I will exhibit this body of artwork which I am planning. They have posed three questions to me to contemplate prior to filming.

1. What is the most challenging part of having a loved one with dementia?

2. What is the most challenging part of care-giving for a loved one with dementia ?

3. What is the most rewarding part of care-giving for a loved one with dementia?

And so I've begun to contemplate this experience. Our relationship with a parent is complex. Often we are still working out issues with them when suddenly things change and they need us in ways we never imagined. I've watched friends with unresolved relationships struggle with a sense of duty towards a parent who frequently made them grit their teeth. My relationship with my mother has always been comparatively easy. We share interests in art and literature. We have some similar threads in our make-up and understand each other. Because of that I have always felt a sense of empathy for her and she for me. That causes me to join her on this journey, to feel for her deeply when she is confused or fearful, to appreciate the parts of her I still see within. And yes, to feel the loss of what we once had even as I don't want to diminish what we still have.

Suddenly this competent thoughtful woman is reliant on me. It is a switching of roles between parent and child as I gradually lose the person I knew. We used to have discussions of books we read. Now she can't retain the thread of the story. We traveled together on many trips to Europe. Our first trip followed my breakup with an old boyfriend with whom I had traveled. In its wake I decided I wanted to build and share memories with someone who would always be a part of my life and I reasoned what better person than my mother. It never occurred to me that she might not be able to retain those memories at some point in the future. So one of the challenges is the inevitable loss, both hers and perhaps selfishly mine.

One of the hardest parts of caregiving is not knowing what comes next. You know it doesn't get better, but there are plateaus. You don't know how long you get before things worsen and you don't know exactly how it will worsen. I don't want my mom to feel fearful, to worry about this loss she lives with daily. She reports to me that she is "farmisht" (Yiddish for mixed up), aware that things are not working quite right. I want her to enjoy her remaining time, to feel connected and supported and productive. And so I call her each morning and fly in often to see her. I do what I can do from many miles away. I don't take anything for granted. That is the rewarding part. It forces me to recognize that life as I've known it is fleeting and I better do everything I can do to appreciate and support her while I can. I won't get a second shot at this so I better show up. At the end of the day it is the relationships that matter.

For me it is not only my relationship with my mother, but also my sister. I am fortunate to have a sister as a partner in this. For much of our lives we followed different paths meeting up annually around the Thanksgiving table. At crisis points we talked more frequently, but for the most part we were both busy with our very different lives. Because she lives closer to my mom she takes on a lot, a weekly visit which enables my mom to live in her home. We divide other responsibilities, I deal with finances, she deals with health. I trust her completely to always do what is best for our mom. Just as I commit to my mother, I also have a commitment to my sister. We're in this together and I do my best to hold up my end of things. In the process I have learned to appreciate my sister on a whole different level. That is one of the many gifts my mother's circumstances have bequeathed me. It occurs to me that someday my mother will become memory, made of that very ethereal substance she finds so hard to retain. My sister will be one of the few people with whom I will share that precious memory.

 

Sunday, August 10, 2014

Into the Wilderness

"I’m confused", my mother reports when I call her in the morning. "Where is everyone? I feel like I’m all alone. Has everyone forgotten about me? It's like I’m in a wilderness".


"I haven't forgotten about you", I reply. "Here I am with your morning call and Sally will be there soon". 

Every morning I coax her through her day. "What day is it?" she asks. Time is a slippery devil, it keeps changing, never standing still. On top of the refrigerator is a large digital display with the day and time in red.
She reads it to me. "Monday, 8:35" I remind her to take her pills and she goes to her pill box. "Is today Monday?" she asks. We again establish that it is Monday and she takes out the Monday pills."There are an awful lot of pills", she says, the same statement she makes every day. "Who is coming today?" she asks again. I remind her that is it Sally. It is a short list, the same person virtually every day except when my sister arrives. I repeat myself many times matter of factly. I have long ago moved past irritation. It is what needs to be done. Each time she asks, it is a new question for her. "I’m so glad you help me to know what’s coming in my day," she says gratefully. "I couldn’t live alone without that".

My mother is losing memory. I try to pinpoint where it began. Five years ago she was fine. My late father's memory loss was more severe and perhaps overshadowed her more gradual diminishment. She has been on a plateau for a long time, not great, but not terrible either. My sister and I had adjusted to this new normal when suddenly the ground beneath us shifted abruptly, the floor of a crazy fun house dropping suddenly, our stomachs lurch with it. We evaluate what we need to do to support this change. We worry about her being afraid, but take comfort in the familiar person still there in the middle of this. The core remains despite these changes.
 
I am intrigued with her description of her experience, a wilderness. I am surprised that she can identify her confusion, perhaps a stage along the way until she is lost in that wilderness and the confusion that it represents. She is an intelligent person and has the vocabulary to put words to what she experiences. I am beginning to think through a series of paintings that capture this experience and I ponder this wilderness, this new and confusing world that she is entering. What would she take with her, what does she see and hear?

We talk about her cat, a special companion to my mother. When we returned from a trip, I was worried about her reorienting, settling back in. When I heard her speaking to her cat in the night I sighed in relief. Her cat is her companion and gives her comfort, another living, breathing creature. Her cat would accompany her into this wilderness. My mother writes a lot of notes to herself. Not always logical, she writes down times that five minutes later will be obsolete. It is the act of writing that helps fix her reality. Today I reported how long before her companion would arrive, 20 minutes, 15, 10. She writes this down as if to capture time, to make it stand still for her like her oven clock, stuck at ten after eight for countless years. 

I picture a path of yellow post-it notes, a yellow brick road of sorts with her cat leading the way, her shadow behind. A thick and tangled forest in front. The red flash of time through the trees. And my phone call reverberating in waves, an anchor for her as she stands before this forest. Into the Wilderness. I often know the title before anything else. I can picture this wilderness with its echoes of noise and light, her following her cat into the unknown. I add it to my to do list of paintings on the theme of memory.

Wednesday, August 6, 2014

Validating Instincts

As a genealogist, I have learned to trust my instincts. They often lead me to pursue what might seem like a tenuous link to some, perhaps merely a coincidental confluence of facts, but for some reason they call to me. My challenge is to validate the connection through records to confirm that it is more than a coincidence, to prove or disprove my hypothesis.

In my latest project I was asked to identify the towns of origin for both sides of my client's family. My starting point is what I know which in this case was very little except for grandparents' names. This is a fairly typical beginning point. This client reached out to other family members who offered some rumored ports of arrival, all helpful information if applied wisely. While I use this in my search, I am always careful not to let it blind me to other possibilities. Often family members immigrate separately or in small groups so while I assumed at least one family member followed the route of family folklore, I also explored alternate routes.

As always I began by searching for census records on ancestry.com which tell me at least the approximate year of arrival so I can narrow my focus. With that information, I turned to stevemorse.org which allows me to search for immigration records on many variables. After a number of searches I found some immigration records for each family which revealed the towns of origin. Mystery solved, but wait a minute. One record noted Warsaw as the town of origin. I've learned that many immigrants will note a nearby large city rather than the smaller town in which they live. My grandfather's marriage record notes he was from Warsaw when in fact he came from a town an hour away. I wondered if this might also be true in this case.

I did a search on JRI-Poland.org with the given names of both husband and wife along with the married name. I was searching for Leon and Bella, but first I converted Leon to Leib and Bella to Bayla, the non-Americanized versions that they went by in Poland. Only a few index entries came up and the most promising was a marriage record for a town about 80 miles from Warsaw. The entry had the correct surname and the given names of Szija Leib and Bayla Brandel. Close, but no certainty, still very much in the realm of hunch.

This was just the index and I wanted the actual record. Records can be located in one of three ways. Some records are held at the Family History Library in Utah. The JRI-Poland site will often tell you the film number or you can search the FHL catalog on-line to learn whether they have the film for the year or town in question. You can order a film to review at one of their church libraries or if it is an isolated record for which you know the precise coordinates you may ask them to send it digitally.

If not at the FHL you can contact the appropriate arm of the Polish Archives to order the record, sending them a wire for the cost involved. Needless to say this is the most cumbersome means with potential language barriers to navigate.

The third way is fairly new. The Polish Archives are beginning to digitize records and in this case the index advised me that this specific record was on-line and provided a link. It took a while to navigate the all-Polish site, but with the year and record number I was able to ultimately locate it.

The record was in Russian so I deciphered enough to believe it was still a possibility. I decided to cross-check my translation by posting it on Jewishgen's Viewmate translation site in hopes that a kind and fluent researcher might translate it for me. After a few days I had received my translation.

To verify this record I needed to know one more detail, what was on their tombstones. Jewish tombstones have the Hebrew names of the individual and that of their father, the same information that is in a marriage record. I circled back to my client who sent me photos of the tombstones. Then I began to see how the information matched up.

So what did I find? The record showed Szija Leib's father as Mechil and Bella's father as Izak. Their tombstones showed Menachem and Yitzhak, a pretty close match in the art of tombstone matching. I then looked at the Hebrew tombstone names. Leib's appeared to be Joshua Arieh and Bayla's was Bayla Brina. I knew that Szija is derived from Isaiah which comes from the same root as Joshua. I soon learned from baby naming sites that they all translate to God is salvation or God saves. Similarly Areih and Leib both mean lion. Bayla's name in the marriage record was Bayla Brandel, not far from Bayla Brina.

My hypothesis has strengthened, but still reliant on comparable names, not a perfectly clean match. How else can I prove this out? I decide to return to immigration records, but this time using the town's name from the marriage record I had discovered. Searching with this new piece of information I found the immigration record of Bayla and several of their children. There are two pieces of data on which I focus, nearest relative in Europe and who were they going to. In this case I had a perfect match as she named her destination with her husband's name and town. Even better she gave her mother's name as nearest European relative, a perfect match of both given name, surname and town to the marriage record.

So what's next? With a firm foundation, we can begin to look for related records. On JRI-Poland I find indices for birth records for both Leib and Bayla, a marriage record for Bayla's parents and a death record of a Leib with the correct last name just one year before the younger Szija Leib's birth. Given the time proximity it may well be his grandfather after whom he is named. I order the records from the Family History Library and settle in to await further discoveries.

And there we have it, puzzle solved.