Thursday, July 16, 2015

Of Blessed Memory

After my mother passed, I stepped into the whirlwind of activity that accompanies a death. Having done this with my father I knew what to expect this time and with two weeks of waiting we actually had done many of the necessary things.

I had dreaded the funeral, thinking of it as something I just had to get through. Somehow I managed to deliver my remarks on my mother without dissolving into tears. I was touched by the people who shared memories of my mother. Their experience with her in the public world was the same as mine in the private world of family. So many people present a different face to the public. My mother had a consistent presence and was so often described by her kindness. She was an easy person to love and admire. I still have trouble describing her in the past tense.

Our drive back to Minnesota felt like a separation from the hard reality in which I had been a participant. I could almost tell myself that my Mom was still back there living her life. I don't think the reality has fully hit me yet. The finality of it all. It was fascinating and mysterious, but oh so final. I've heard from readers of this blog who experienced some of the mystery that I too observed. It has changed my understanding of death and left me more hopeful that our energy continues in some form. I guess I'll find out some day, but as I used to say to my mom when she talked of death, "No hurry".

What I had not expected was this wave of fatigue. For almost two weeks I had camped out in my mother's room in hospice, waking every two hours as nurses checked on her. Now I cannot sleep more than two hours at a time. The hospice social worker calls. They continue to reach out to family to offer support. Very solicitous, but my stoic self can't imagine how I'd draw on what they offer.

In the midst of this my computer gets a virus, sending errant emails to my email list. I want to wail,"Leave me alone! Don't you know my mother just died. Go pick on someone else."

I throw my energy into my to do list, filled with post-death financial responsibilities. I check off my list diligently, taking comfort in these tasks I know how to do. My solace is always in action and there is no shortage of things to do.

Once again I pick up the threads of my life that had been abandoned as I waited in that hospice room in Illinois. Tonight I have an opening and have spent the day assembling the pieces around my paintings. The work is focused on memory. Once my focus was loss of memory as I watched my mother lose pieces of her memory, yet retain her identity. Now the theme of memory revolves around my memories of her.

I have written in these pages of a memory jar that I once gave my mother, filled with all my precious memories of our time together. It felt symbolic to retrieve it from her home and bring it back to mine. I am indeed the keeper of our memories.

The Jewish Artists' Lab show that opens this evening is on the theme of water which I of course tied back to memory.  Because I couldn't stop at just one painting it turned into a diptych inspired by a quote by Toni Morrison.

"You know they straightened out the Mississippi River in places... Occasionally the river floods these places. "Floods" is the word they use, but in fact it is not flooding; it is remembering. Remembering where it used to be. All water has a perfect memory and is forever trying to get back to where it was."

Water is often used as a metaphor for memory. We speak of waves and floods of memory. Of memories submerged or bubbling up.

In the beginning God's breath hovered over the water. Then God divides the water into sky and sea, then land from water. The creation of the world has to do with differentiation. A flood signifies a returning of water to land, a remembering of its origin. The sky offers its rains that roil the waters and overtake the land, joining firmament, ocean and land into its original whole.

My artwork examines the parallels between memory and flooding, identity and creation. My work on memory explores the persistence of identity that also develops out of differentiation, an echo of the creation story. We are this, not that. Even as memory flees, we continue to seek the familiar boundaries of our one-time identity just as does the river when it floods.

In front of my painting is a memory jar. I am asking people to contribute a memory they once shared with a loved one who may have lost memory. I will develop a series of paintings of memories that are shared. The series will honor those who are kept alive in memory by those who love them. I will call it "Of Blessed Memory", what more fitting conclusion to my recent tumultuous weeks bidding goodbye to my mother.

Sunday, July 12, 2015

Waiting 5

 My mother passed away on July 4th, 2015 at the age of 88. I spent the last two and a half weeks of her life with her, much of it in hospice waiting for her to pass. It was the first time I had been that close to the dying process and I am grateful I had that time with her. It was a very strange experience, often fascinating, sometimes surreal. (5 of 5 posts)
It has been ten days since that first phone call. We have taken over the room with roll away beds and easy chairs. As we've become fixtures around here the staff have been very accommodating. We fall asleep to the sound of my mom's breathing and the oxygen pump. It is part dormitory with a touch of slumber party, this vigil. My mother is very hard of hearing, but we are told that hearing becomes acute at this stage. "What are you giggling about?" my mother asked a few days ago, back when she was still speaking. Normally she would only hear us if we spoke loudly facing her. I think she likes the sound of her girls giggling. And yes there are moments of giggles amidst the sadness. One of the many incongruities of this strange time.

We think we are near. The signs that they told us about are appearing. Maybe today. No more talk, just sleep. Her breathing is jagged. Part of me is fascinated by the process of dying, how defined it is, at least the outward manifestations. What we don't know is the inner experience.

My sister sings songs to her that they used to sing when my Mom took her to kindergarten. I talk to her about our travels together. I reminisce about a trip we shared in France. I had gotten aboard our train and then reached my hand down to her. Just then the train jolted and pulled forward. I stood in shock as she grew smaller on the platform. Finally I threw my bag down and jumped. After that we clung to each other when we boarded a train. We are going to go separate paths for awhile, I tell her. 
It will be OK.

I wonder how I'll react afterwards. I've been focused on the mom with Alzheimer's and haven't allowed myself to think of the amazing person she was before. I didn't want to spend time bemoaning that change. I wanted to appreciate the person in front of me. Even in a diminished state she has been a kind, loving person, her essence intact. I've been mourning gradual łosses all along. Soon I can allow myself to miss the whole person, the person I've known over a lifetime. It would have been harder without the Alzheimers. Perhaps it was a gift. To let go of the person she was with all her faculties would have been wrenching. This is hard enough.

Nurse LaRosa tells us that if Mom passes tonight, one of our CNAs asked her to call her. She wanted to come in and wash Mom, an act of love for her Rose. There are rich connections that have been formed with the staff here. The loving care they have given our mother is special. They had two weeks of her in her normal state with which to bond. What amazes me is how many of them did. They saw the person within and I am grateful.


It is now eleven days since I learned there were signs of impending death, nine days in hospice. It feels as if she is no longer there, but her body is hanging on. This is the hard part. When she was still conscious the time was precious, we could still feel a connection and communicate. Now we just wait for her body to tire of the fight.

My husband is still 500 miles away. I will call him when Mom passes and he will drive eight hours. It is hard for him too, living his life on hold, not knowing. I at least have the certainty of each moment, of each breath that she takes. He tells me he wants to be there to support me, but doesn't want to be in the way. I know he went through this with his mother and I watched his grief. It is comforting to know he understands on a very visceral level.

Cutting & Pasting with Mom's collages below
I think about support. What does that mean? What do I need? I've been mostly with my sister and niece who feel as deeply for my mom as I do. That is a form of support, to be with people who understand the importance of that person. We get support from many of the staff here. They recognize and treasure my funny, warm, loving mother. Hugs are given freely. I feel especially supported by my friend Dora, a second mom to me. Her voice on the phone brings comfort. Many of my friends have lost parents. They reach out with kind words. Normally I am not very good with accepting support. There is a bit of a stoic strain in me and right now this is something to get through. I think perhaps the need for support will come later, when grief can fully surface. I remember my husband had a large photo of his mother on our refrigerator for months after she died. Every time he put food in his mouth, he thought about her.

I have a painting I did recently of my mother, now hanging in my studio. She is cutting and pasting, her equivalent of collage. She used the language of her old career as a first grade teacher. I look at her last book of collage images. She last cut and pasted on June 15th. I find the Mother's Day card I sent her collaged in. My husband had the forethought to put the painting in the car. He remembered us having one I had done of his mother there at her visitation. Her painting was of our weekly Scrabble game, commemorating when she put down a seven letter word. It conjured up her presence doing something she loved. I would like this to do the same for my mother.

We are going into a holiday weekend. Tomorrow is the Fourth of July. It seems a fitting day for my mother to pass. She loves the American flag. When we drive by one she always notices it. Flags stand in her planters and at my father's grave. When I see flags they make me think of my mother. She has always said she is so happy that she was born in America where she got an education. Her mother came from the Ukraine. Boys were educated, but not the girls.

My sister strokes one of my mother's arms, I stroke the other. I'm not sure who came up with the idea of telling a loved one it is OK to let go or how valid that is. We decide to try again. I remind my mom of our travels in Europe, how she dreaded the next city on our itinerary, not wanting to leave the familiar. Then she would grow to love the new city and not want to venture to the next. Change was always hard for her and this is the biggest one she will ever face.
I talk of how fulfilling her life has been, how she's loved each part of her life. Of the people she's touched. I once told her that my philosophy of life is to take my little piece of the world and make it shine. That resonated with her and she adopted it, writing it out and posting it over her desk, next to a flag of course. We told her that her piece of the world was shining.

It is the Fourth of July in the middle of the night. The nurse has come in several times tonight. Each time she checks my mother's heart and says it is weakening. We sit on either side of my mother's bed. "It's OK Mom", we say as we stroke her arms. "You can let go".

It is a time that seems to call for a blessing. Not a normal practice in our lives, but this is not a normal time. My voice choked with tears, I recite the one she has always loved. 

"May the Lord bless you and keep you, may the Lord make His face to shine upon you and be gracious unto you. May the Lord lift up his countenance upon you and grant you peace."

 A few minutes later she passes from this world.


A special thanks to the staff of Lutheran Hillside Village in Peoria, Illinois who cared for my mother in her final days and treated us all with great kindness and compassion.

Saturday, July 11, 2015

Waiting 4

My mother passed away on July 4th, 2015 at the age of 88. I spent the last two and a half weeks of her life with her, much of it in hospice waiting for her to pass. It was the first time I had been that close to the dying process and I am grateful I had that time with her. It was a very strange experience, often fascinating, sometimes surreal. (4 of 5 posts)

Today was a peaceful day.  Mom's breathing is calmer, more steady.  She still can speak, sometimes garbled, sometimes quite clear.  Sometimes to us and sometimes to someone we can't see.  My sister and niece both thought it was my late father.  I asked why and they said it seemed as if she was answering requests.  Yep, that would be him.

Today is apparently not the day. Her breathing will get more ragged first, long pauses in between. Part of me wants this to end. We've said our goodbyes, it seems like time. The other part of me selfishly wants to be able to reach out and take her hand. She's not even the abridged version of her self, the Alzheimer's version, but there is comfort in physical presence and touch. Soon I won't have that. There is a lot of back and forth, ragged breathing suddenly calmed. It is not a steady deterioration. When she seems to improve I entertain a fantasy of running the film in reverse. All the events that led to her lying in this bed would suddenly run backwards. While I'm indulging in magical thinking I'll take her back to her pre-Alzheimer days, back to book discussions, travels and wise advice.

I take a break and go outside to absorb some sunshine, too many hours in a dark room and too much magical thinking. On the way out I pass the chapel. A half circle of people kneel on the ground. Hmm, Buddhists? Muslims? How ecumenical. We are Jewish in a Lutheran facility, so why not Buddhists or Muslims too? Then they partially rise and bow forward three times, hands pushing towards the ground below. It is only then that I notice the dummies below and realize it is a CPR class. 

I sit in the warm sun basking in the world of the living. I call my friend Dora who is in her 90s. We get together or talk every week and I've been away for a week beyond what I'd planned. Dora is a second mom to me and it is comforting to speak with her. When I didn't call, she worried that something had gone wrong. "You know I'll go eventually too," she says. "Yeah", I reply, "and I don't like that one bit."

Another day and my mother's breath still seems even. She doesn't eat. I can't remember when she last had anything but water. I am glad we didn't have to make a decision to pull a plug. Our choice was a relatively easy one. There was no viable choice given her age. It will be a peaceful death.   Just a limbo of waiting.
I have spent more time with family this past week than I have since we were children. We are different people. Sometimes the differences chaff. A spark flies and we quench it. Our relationship with each other will change without our mother at the core. I got to know my sister in a different way as we cared for my mother's needs. We shared a room as children, but I feel as if I only recently got to know her well. Will we drift back to our separate worlds once again? I watch my niece with her grandmother and am touched. She is so good with her, at ease in this strange situation. My other niece uses the opportunity to explain death to her four year old who had a loving relationship with his great-Gaya.

One of our favorite nurses just came in. She puts her arm around Mom, cradling her. She speaks softly into her ear. Then she turns to my sister and me. "Your mom is a fighter"she says. "She's still here because of you."

I take mom's hand and tell her I love her. I tell her we are OK, to do what she needs to do. We'll be all right. We've said that before. Does she hear the tears in our voice and think our heart isn't fully in it?

I tell my sister that if Mom is sticking around for anyone, it's her. My sister has been my mom's primary caregiver for several years and has built a strong emotional bond with her. 

She looks at me in surprise and says, "No, I think she's sticking around for you."

"Me, why?" I ask. She replies that my wiring and Mom's are very similar.  That is true. We have always understood each other viscerally. 

My sister read that people sometimes slip away when loved ones step out of the room, as if their presence ties the person to this world, the watched pot theory. We decide to vacate the premises for awhile. We ask the nurse to check in on her while we are out. After awhile I get a text from my sister-"It is OK to return now". What does that mean I wonder as I walk quickly down the hall. Did it work? Mom is still breathing quietly.

One of my mom's caregiver from the past few years stops by. They had a lovely bond and Sally talks with her about a recent trip to Niagara Falls. Mom went there on her honeymoon. Virtually every day, even in hospice, my mother has started the day by asking, "So what's the program today? An odd question from one's deathbed. We ask Sally if Mom said that to her as well and learn that was her daily greeting.

In the midst of this limbo, I continue to deal with practical matters, shutting down services for my mom that are no longer needed. If you ever need an outlet for all the emotion around the impending death of a parent, call their cable company. They will not disappoint in providing you with a cathartic experience. As my husband quipped, they have a reputation to uphold. 

I had cancelled her Direct TV service and was told we would receive a credit. I dutifully spelled out my address for them. We then received an email that they were sending out a debit card with the credit to an address which vaguely resembled mine, but was incorrect. I called to Citi, the administrator, to have them make a note of the correct address in case it came back in the mail.

Then the idiocy began. They wanted to speak with my mother, obviously not feasible as I explained to them. Then they advised me that they couldn't make that note without me faxing my POA to them and emails with scans were unacceptable. To correct an address that THEY recorded incorrectly. After working my way up a chain of idiocy, I must confess I was none too polite as I let loose from the middle of the parking lot, shaking with rage. This is not a time when one suffers fools well. Never was very good at that even on a good day.

We are obviously wearing thin. It has been nine days since that first phone call and seven days of hospice. And so we wait.

Friday, July 10, 2015

Waiting 3

objects in Mom's window
My mother passed away on July 4th, 2015 at the age of 88. I spent the last two and a half weeks of her life with her, much of it in hospice waiting for her to pass. It was the first time I had been that close to the dying process and I am grateful I had that time with her. It was a very strange experience, often fascinating,  sometimes surreal.  (3rd of 5 entries).

Today it is six days since that first phone call, four days since she entered hospice. They say this process takes a week on average. When they take mom's vitals, they always say she has a strong heart. All those hours on her exercise bike.

With the weekend over, our weekday crew of nurses and CNAs returns. Tamika pokes her head in to see if we want something to eat. "Hello my lovelies"she sings out. Her warm smile feels comforting. Our peeps are back. Nurse LaRosa comes in next, another one of the wonderful people who care for Mom. She has a special connection with her. She confides to us that she checked in over the weekend to see how Mom, her Rose, was doing. She jokes with Mom and gives her meds. We tell her about our conversations with Mom. She in turn shares her experience with her mother's death. Many of those who are most present and connected to Mom have gone through this themselves with a parent.

We are awed by the experience we have had here. The kindnesses shown our mother touch us deeply. I've learned a lot about medical conditions the past two weeks, but mostly I've learned how kind, caring people can make a huge difference in the experience of patients and family.

There are many types of care needs in this facility. Different worlds all co-existing. The first week when I was with my mom she was in rehab. I would take her to meals at the dining room, go to activities with her, and sit with her during physical therapy. Many people are here for rehab after a hospital stay. They will either go home afterwards or perhaps move to assisted living or memory care if they are in a transition stage. We had hoped to do that with my mom. I see that world when I walk down the hall and fervently wish my mother could join it.

Now we are in the limbo world abridging death, the waiting room. They check her progression and make her comfortable. We are afraid to leave lest we not be here when she needs us. The rest of the world is on hold unless we can reach it from the computer or it comes to us. The room is filled with our digital technology.

The doctor told us we had some time so I took a brief break. On the way out I saw that they had animals in the lobby, A small pony occupied the central area and a woman cradled a chinchilla. Another activity that mom would have enjoyed. 

When I returned I sat in the car to make a phone call. As I spoke a text from my sister scrolled across my phone "Mom's heart rate has slowed."I dash past a bingo game and rush to the room. Q36, the caller shouts as the bingo game fades into the world of the living and I return to the "waiting room".

We sit with her stroking her arm, holding her hand. She takes a breath. I wait for the next. I count slowly to eight before it comes. We tell her we love her and she tells us the same. "I have a very sweet family' she says. "That's because we have a very sweet mother" we reply. Then she says "I say goodby". We look at each other and whisper, "That sounds final." She squeezes in one more "I love you" and resumes her dozing.

Now we wait. They have told us what to expect. We gather around her, all of her children and one granddaughter. Waiting. It will not be much longer.

Thursday, July 9, 2015

Waiting 2

My mother passed away on July 4th, 2015 at the age of 88. I spent the last two and a half weeks of her life with her, much of it in hospice waiting for her to pass. It was the first time I had been that close to the dying process and I am grateful I had that time with her. It was a very strange experience, often fascinating, sometimes surreal. (2 of 5 posts)

Today Mom was chatty. It felt as if she was saying goodby. When she woke it was with the words, "it's lovely to wake to my two daughters together". She told us how much she loved us. Asked us to give her a kiss. We told her we loved her and were with her. She wasn't alone. We say those words over and over. She tells us she saw mama, her mother who has been gone for many years. Tears well up. I like to think of her going from our love to her mother's love. I say to her,"there is a special connection between mothers and daughters". "Yes, there is" she replies. We have a bit of a love fest, each pronouncing their love like a call and response. Then she says, "So to bed". Her sense of daytime versus night is a bit confused.

We are nearing the end. My brother came in Saturday night. He was the last of the immediate family to arrive.He came to the care center late at night and Mom knew he was there. They exchanged some words. I was unsure if she'd be able to talk much longer. Her voice was beginning to get garbled. She now has her family with her.

I awoke at 4:30 am to the nurses assisting my mom. My niece lay cocooned in a throw on the floor, my sister nearby on two chairs. We have been camping out in her room, afraid to leave for long. We want to be there with her to the end. The care center has been wonderful to her, but also to us. They bring us food and pillows. She had a roommate originally, but that was before her decline. It would be difficult for a roommate now.

We were never a family that was especially comfortable with touch. Now it's all I want to do. I hold her hand, I stroke her arms, her legs, her face. I want her to feel surrounded by love. I want my touch to communicate what my words cannot.

We met yesterday with the lay leader from the temple who will conduct her funeral. My sister and I both remembered that our mother always loved the Birkhat Kohanim, the benediction in the service. 

 "May the Lord bless you and keep you, may the Lord make His face shine upon you and be gracious unto you. May the Lord lift up his countenance upon you and grant you peace." 

When I hear it I always think of her. Strange how a whispered comment from her at a long ago service stays with us until this moment planning her funeral.

My brother has written a eulogy, as have I. My sister drafted an obit. My niece will also speak. I am not sure I can speak without tears, but they tell me that's permissible. We each know different sides of my mother. We plan her funeral as she lays nearby on a collision course with death, but still clinging to life. It is another surreal moment.

There are many details to dying. First the healthcare decisions, often closely intertwined with financial. Then funeral home, service, reception, cemetery. My territory is financial. Accounts and property to retitle, documents to file. I make a list of autopays to stop or continue, expenses to go away that require action on my part, number of death certificates needed. I wonder if other people think about such things. This is territory I know, something I can do in a situation over which I have little control. Oddly enough it calms me. Still, strange to deal with practicalities before death has arrived.

I wonder about my mother's experience. What does she feel physically? emotionally? Does she realize what is happening? I write down what she says. Precious words as we know they will soon end. Some are intriguing. She has talked of going on a trip, Asked how long it will take to go to her new płace. Why does she have to leave? Today she said "new body or old body". I discount nothing. There is much we don't know.

Some of her questions reflect the endless loop of Alzheimer's and we answer them over and over. Where am I? Why am I here? What can I do to get better? No purpose is served in telling her she is dying. She has told us in the past she is ready, happy with the life she lived. She told me early in the past week or two that she didn't think she would get better and maybe it would be better to go "bye-bye", her euphemism for death.

We think she is trying to resolve the loose ends in her life. The people she talks of are those who were close to her, but where there is something unfinished. She was with our father and her brother when they died and talks less of them because there was resolution.

We deal with the mundane along with the spiritual, life and death coexisting side by side. We live in the surreal space between the two.

And so we wait.

Sunday, July 5, 2015

Waiting 1

My mother passed away on July 4th, 2015 at the age of 88. I spent the last two and a half weeks of her life with her, much of it in hospice waiting for her to pass. It was the first time I had been that close to the dying process and I am grateful I had that time with her. During our vigil I recorded my observations which I will share in the next several posts. (1 of 5 posts)

It is 4 am and I am sitting next to my mother holding her hand as I type with one finger. She is in hospice. We don't know how much time we have, but we know the horizon is short.

Family is gathering. My sister and niece are spending this precious time with her as well and my brother is flying in. Yesterday my other niece joined us and brought her children, my mother's two great-grandsons. Mom loves children and lights up when they are around. We got her dressed and in the wheelchair and took her to the gardens outside. It was a good day.

It is not a bad conclusion to a life fully lived. We love her deeply and are grateful. We know we have been lucky. She has had a long life and we are here to ease her transition, to say goodby with all the love we hold for her.

There are moments when this feels very surreal. She is funny and we can see her personality come through. We laugh a lot which seems strange under the circumstances. We write eulogies even as she lies in bed breathing quietly. Life does not always take the form we expect. We are ready intellectually, but the emotions haven't fully caught up. We laugh and then we tear up mid-sentence.

I listen to the oxygen machine breath. I time my own breath to match its rhythm, a count of five. One thousand one, one thousand two... I listen for my mother's breath. She had just entered a care facility for rehab after a stroke. She was doing well. Then suddenly things changed. I came down to visit, to arrange the post-rehab plans. Fifteen minutes before I was to catch a cab and fly home, my phone rang. My first thought was the cabbie was early. "Don't get on the plane" my sister said. Mom's body was beginning to shut down.

We stayed by her side that night and many nights to come. I often can't remember what day it is. I sleep in snatches. One night we google the dying process, trying to learn what we should look for. Unless one is in a medical profession it is not a topic in which most of us are well versed. Friday is especially poignant. The nurses and aides who got to know her stop in during the day. They hug us with tears in their eyes. Many of them connected with her, saw the gentle person we love so deeply. They will not return until Monday. No one knows if she will still be there on their return.

I have never been so close to the dying process. When my dad passed I visited him at the care center and then returned to my home. Later when we got the call we drove through the night to get there in time to plan the funeral. My mother was there for him at the end. We are there for my mother. It is a different experience to sit through the night. To watch her sleep, to listen for her breath, to hold her hand and to answer her questions about long-gone family.

In between I deal with my life. All the practical matters that can intrude. Artwork to be delivered for a show. A pricy new hybrid battery for my Prius that died the day before I left. We need it fixed so my husband can drive down the minute he gets my call. We tell them why we need the car and a two day job is completed in an hour, the battery is comped. Everyone has a mother. I am grateful to my husband for dealing with these details in my absence. He understands too well this strange limbo world of letting go of one's mother.

And so we wait.