Roses are red....

One of the treasures of this time is a booklet a teacher friend had her third graders put together- a book of sympathy notes from children to whom I teach violin every Monday. Here is a sampling of those letters, which made me laugh and cry at the same time.

Vince is the class troublemaker and knows it. He has a heart of gold though and always wants to do right.

Sophie wants to be sure that we can tell the difference between three dead dogs and three dead cats.
Isabel wants to make it up to me. And I wonder if her poem -and several others- had to do with the proximity of this assignment to Valentine's Day

George had overheard some of his classmates talking about a grandma who DID swim in the Arctic, etc. and somehow he thought that was my mom and ME! If only!

Aaron knows the value of a keepsake. My amethyst and opal ring has new special meaning for me as a keepsake from the last week with Mom.

An outpouring of love

Back at home now, and back to work for the last week, I have felt loved and supported by peers and friends. When Jon and I got married nearly two years ago, I felt much the same sort of out-of-the-woodwork responses from all around. It is wonderful to behold and I am so grateful now for the kind words and hugs from friends. The love has come in many forms. A crazy plant from a friend who knows how much I love crazy plants, cards and notes, gentle phone calls, invitations to dinner, and chicken soup brought by on a Sunday afternoon. This is all part of the process, and part of the fabric of humanity that surprises me every time. Maybe that's where the grief goes. It gets absorbed by the living souls who love us. Each one who reaches out takes a little bit of it away- a burden much easier carried by many. I hope I am as good a friend. I don't think I am.

This too shall pass

So where does it go, the grief? What is the chemical thing happening in me? Is it hormonal, or some endocrine function?



Losing my mother is not the first time I have felt deep sadness. And I have always wondered how it is that thoughts and images which, a few days ago, would have me melting down into a puddle of tears, now can invoke simply quiet sadness and reflection.



The day before Mom died, the Hospice nurse sat us three girls down and told us we needed to tell Mom, one by one, that it was okay for her to go, whenever she was ready. We needed to give her permission to leave us. She acknowledged that this would be very difficult. And she also told us that, even though Mom had been adamant that we not "blubber" over her, that if we cried it was okay.



When my turn came, I sat with Mom and held her hand. She was awake and responsive. I told her I loved her and would miss her, she had been a great mom, and it was okay for her to go, whenever she was ready. "Go where?" She asked. Tears came and I said, "Gee I don't know. Wherever it is you are going next." She sort of nodded, and then asked why I was crying. I said I couldn't help it, and she opened her arms to hug me and comfort me. This made me cry all the harder and I think I even saw a tiny tear squeeze out from Mom's own eye. She was never one to cry for anything, anytime. That's another whole story.



But even this memory over the last week has been one of the most powerful emotional provocations to tears ever, now, after conjuring it up, consciously at times, unbidden at others, it is losing its fire and bite, and I can almost reflect on the moment without the deep sorrow.

I want to learn more about the biochemistry of this transition.

I know there are stages of grief, steps we go through to reach a state of acceptance. But I am interested to know how the body does this. It seems to be biological and involuntary, though we can control the timing of it some.

Farewell

Tuesday February 17, 2009

Mom passed away Sunday morning at 7:14. At that moment, I was writing the last post, and my sister Lynn was standing in the doorway saying to me that she thought we should get over to Mom's house. She didn't believe that the night nurse was going to do what she had said she'd do, which was call us if she suspected the moment of death was near, or, missing that, she would call us before she called Hospice when she passed. We had left Saturday night fully expecting to be wakened before morning by a phone call. But none had come, and I was feeling I had at least time to finish writing and then grab a much-needed shower. I reassured Lynn that the wonderful night nurse would not fail us, and if we hadn't heard from her, it meant Mom was still hanging in.

A few minutes later the phone rang with the news. Mom had passed away about 10 minutes before. Lynn's instinct had been right on. The nurse HAD been trying to call us for the last many minutes, but somehow had wrong numbers. (Lynn later looked at the slip of paper she had left her cell phone number on and realized she had written it wrong). Lynn left right away, since she had been up since three or four.

When Lee and I arrived a little later, the woman at the front desk of the retirement home asked us who we were. This was so absurd as we had been coming and going all week with just a hello to the gals on shift there. So we told this woman that we were going to our mom's and she had passed away earlier this morning. She said something like she already knew that, and we were to keep her posted. It was almost as if she was in a hurry to finish up whatever needed to happen and free up the apartment. Cold.

When we got to Mom's apartment, the Hospice nurse greeted us, and placed herself between us and Mom's bedroom door. She wanted us to sit and talk with her first. She and the night nurse explained how the end had come: peacefully, with the night nurse holding her hand, and talking to her, telling her it was okay to let go of the pain and accept the peace. The Hospice nurse took over here telling us we could see her if we wanted to and that she looked, well, dead. She described this look: no color, mouth and eyes open.

Lee and I both wanted to see her. We went into the bedroom where her one reading lamp was lit, and the blinds closed. The night nurse had straightened the bed and arranged Mom in it. She really did look peaceful. Lee and I touched her and talked to her. I had never seen any dead person before this and it was less gruesome than I thought it would be. This was not our mother anymore than the desk was, but she had recently inhabited this shell, and somehow it seemed she might still be around somewhere, just not there.

After a few minutes of quiet tears and loving words, we were done.

Next we needed to remove all her jewelry and catalogue it for the hospice people, so that no one would be accused of stealing anything. Lee and I helped the Hospice nurse do this task, and I am glad we did. It was a way of helping us say goodbye, and a way of connecting with Mom even now.

Mom had donated her body to a research program called Science Care, so they got a phone call next. The wonderful Hospice nurse took care of all the details here, including talking to the front desk person about what was happening. Lynn had to redo some of the paper work and run to Kinko's to fax it all in. The home care night nurse (Who had agreed to work a double shift since it was Mary's day off and they wanted Mom to have the continuity of caregivers whom she knew and who knew her) left at this point with hugs and thank yous and a few more tears. These people really are amazing and gifted.

After a little while a young man in a black suit came with a narrow gurney covered with a flowered quilt. As the Hospice nurse and this gentle man worked to transfer Mom to the gurney, they talked to her as though she was still around. This gesture touched us deeply. Finally it was time for Mom to leave. There was some difficulty getting the little gurney around the corners and out the door. The hospice nurse joked that this was the one time in the whole process that Mom had not cooperated. We laughed.

Everything else about this transition timed out as though Mom wanted to be sure we, none of us, were inconvenienced. This is so typical of the way she behaved through her whole life. She passed in early morning, not middle of the night, so no one had to be summoned from sleep. Lee and I had airplane reservations for the following day, and had been wondering to ourselves all week if we should change them. Since there will be no memorial until we receive Mom's remains in 2-4 months, and Lynn wants to tackle the packing and storing of Mom's worldy goods herself at her own pace, we could make good on our flight plans and leave the next day. And at 2:00 Sunday afternoon, we were all scheduled to see Lynn's daughter in a musical. Mom would have gone too, if she was still with us, if there was any way. She so loved that her granddaughter was a singing, tap dancing actress. The nurses seem to think that people do have some control over the timing of their own deaths, and after this experience, I can't help but think so too.

My loving husband sent for some books to help us understand these processes. I would like to share them here, though I have not read them all yet. The first and maybe most relevant is Gone From My Sight The Dying Experience, by Barbara Karnes. This is a little pamphlet which outlines very simply what to expect in the months, weeks, days, hours, and minutes before death. It is a quick read, and gave me much comfort knowing that what our mother was going through was a predictable process, much like the development of a child.

Expanding on the ideas of the pamphlet is a larger book, also by Barbara Karnes called The Final Act of Living. This book is also a very easy read, and fills in the details the pamphlet touches. There is good information here for the loved ones of a dying person, as well as for caregivers working with terminally ill clients.

The other two books, which I will read now in my leisure for a deeper understanding are Final Gifts, by Maggie Callanan and Patricia Kelley, and Dying Well, by Ira Bock, M.D.

I will keep writing here, as a memorial to a wonderful mother, a loyal sister, and a good friend to all who knew her. There are more stories to share, both of her last days, and of the 82 years of her rich and full life.

Brainial Confusion

Denver CO


Mom has stabilized for the moment. She is pretty lucid, though wanting and needing increasing amounts of the various pain medications, so her wakeful and chatty times are short. She is very glad we are here, and is queen of her domain with 24/7 nursing care and her daughters catering to her every whim.

We are all actually having a nice visit, with the specter of inevitability hanging over it all. I am glad I'm here too. She is NOT at death's door as the hospice nurse thought on Sunday. So I could have waited till today to go as we originally planned. But since the time is finite, I'm glad to have whatever I can get. Also my ever strong sister Lynn is straining under the weight of the burden she been carrying being the closest daughter. So it's good to be here to relieve her some, however temporary.

We are now dealing with the possibility that this level of involvement may go on a while. No one knows how long of course, but Lynn and the hospice people set up this 24/7 home nurse thing thinking we were looking at not more than two weeks or so. And now it appears she will hang in longer than that, and this level of skilled care is too expensive to keep up for very long. (Lee and I were ready to jump in and manage the day portion of the care, to save some money and had the day nurse fill us in on how to do the meds which are set up weekly by the hospice nurse...or daily as things change...but Mom was fiercely adamant that ONLY the nurses give us her meds...so that idea went right out the window) The other thing is that Mom is living in a very expensive facility which she doesn't want to leave- understandably- but the time will come when the care she is getting is more important than the fancy apartment.

The nurses have been wonderful, and have even offered to go "underground" to help us as freelancers, since the company they work for gets a huge chunk of the money that is paid. They both are bonded as individuals and take work through this company because they can't always get work on their own. I don't know if we will go that route, because the coordination between the hospice people and the nurses is important and I don't know if it would be as seamless or easy if it was freelanced.

The best thing about it all is that Mom is so at peace and comfortable. She has piles of audio books from the library and is happy for hours in her morphine-induced dream state listening through her earbud to long and complicated stories. She isn't sleeping, because as soon as you call her name and touch her forehead, she's instantly ready to sit up and have a chat, and she can't remember what she has "read" (she always says she is "reading" this or that book)but the transporting of her psyche and inner vision is precious to her. I think she has an idea that death for her will be just a drifting away into the world she sees in her head as she listens to her books. She has said as much- something like "this is the way to go from one life to the next," as though she is making a prescription for anyone about to embark on the same journey.

For years, Mom has told Lee and me that she doesn't want us visiting her at the same time because it's too much conversation for her to keep track of at once. Her bad hearing makes it hard to sort out who is saying what. So we have dutifully followed her wishes. And even now she said she only wanted us one at a time. But we were both in her apartment and she kept saying "who's there?" So Lee came in and now she wants us both in chairs at her bedside. Mom flung her arms out yesterday and said "Gee I didn't know we were going to have a family reunion! This is great! Look at you both here!" Or something like that. To which Lee and I looked at each other out of the corner of our rolling eyes!

Beans and Cornflakes

Friday February 13, 2009

This week my sister Lee and I have been camping out at our other sister's home in Denver while we watch Mom slide into "the next life" on a wave of audio books. It is both fascinating and exhausting to participate in this transition.

Yesterday when I went into Mom's room to "touch her forehead, and say her name, not mom, but Donna", she looked weakly at me and said she didn't want to talk now, and waved me away with her ring bejeweled and delicate hand. I have been able to keep a stoic and upbeat demeanor around Mom as she has requested- no "hoobooing"- and have saved my just-under-the-surface tears for when I am out of her sight. But that waving away really got to me, and I cried my way back to the living room, where Lee joined me, releasing a few tears from her otherwise dry eyes. The nurse said we were going to make her cry. We are all human after all.

After being filled in by our wonderful day nurse about the state of things- no bowel movements for day, a suppository might help, Mom is crabby and uncomfortable and they have been increasing her pain meds, though she doesn't want Adavan any more, and she really isn't eating except for the oatmeal, applesauce and Ensure that helps her get her pills down- Lee and I played a game and a half of Scrabble. This is a long time passion of us both, so without her daughter, our husbands, jobs or regular lives to distract us, the game gave an air of normality to the afternoon, and gave us something else, more fun, to think about.

After a while Mom stirred from her la-la land - I could hear her through the monitor the nurse has set up- and I went in to see her lying on her back eyes open, staring at the ceiling. She said she wanted to go to the bathroom- yay!- so I summoned the nurse (whom I will call Mary) and got back to Scrabble. After the necessaries, Mom announced she wanted to come into the living room to visit. So Mary and we helped her with much difficulty to her big comfy chair and put her feet up.

The day before we had brought a six pack of little bottles of lotion all with exotic scents at her request for some good smelling and smooth lotion for her skin which was "dry as a cob". Once seated comfortably she wanted some lotion, so we slathered her arms and legs with White Tea and then settled in for a chat.

Mom wears as many rings on her fingers at a time as possible; gold and gems are among her most favorite things on this earth. She had asked me on Tuesday for ring, and I knew she wanted to wear an amethyst and opal ring my husband had bought for me before we were married. She had loved that ring, and I had stopped wearing it when one of the stones fell out. I called my husband in California and he took it to the jeweler next morning and sent it overnight here to Denver. I gave it to Mom and she was delighted. "Now I have everyone represented", she said. I told her she could just have the ring.



This brings up another gem-related story that I have to share just for the dark humor of it. Another of Mom's rings, a large garnet set in gold, had dropped its stone and the ring with the stone lay in the bottom of her jewelry box. We had offered to get it fixed, which also delighted our mom. So here we were in the jeweler's yesterday ring in hand. The lady behind the counter was Indian and we told her that we wanted this for our mother. "Oh you are sisters" she commented. "How old is your mother?" 82 we told her. "Oh is she still living then?" (A dumb question, but oh well) Lee and I sort of hemmed and hawed...."well, sort of...barely"."What," the lady asked, "is she a living vegetable?" We assured her, no, she's actually pretty with it, but has cancer and her time is short. (We are going to get the ring, we hope, tomorrow). We didn't make any outward reaction to such a tasteless question, but when we got outside and for the rest of the day, we cracked up, laughing so hard we almost cried over it.



So back to the living room, mom enthroned and holding court with splayed daughters on couch.
She shared stories with us and some information about family and friends. We remembered things, we laughed.

One story we had never heard before was about when her older sister Corolyn had scarlet fever as a child in Hadley Minnesota, and the whole family had been quarantined for a period of time. With her mind in a fog Mom kept confusing the word "quarantine" with "camouflage". She also had trouble getting the time right. First she said they had had to stay in the house for three years. "What?!" Then she said she meant three months, and finally she pounded the arm of the chair and said "I mean three WEEKS!" The story went on that her dad had had to live on the back porch in the freezing cold because he had to go to work, and that was as close as he was allowed to the family. Grandma slipped him food through the door, and for that period he lived mostly on "beans and cornflakes". The kids from school brought homework for the three Larson girls and left it for them at the end of the sidewalk. When finally they were allowed out, the whole family had to submit to fumigation, and then the girls could go back to school where they were shunned for a time by their friends.

Another story: Our father's brother Herb married a Mennonite girl named Catherine in 1947. Mom and Dad weren't married yet, but were engaged. Mom was confused about whose children were along the day of the wedding, but we assured her they were none of us. Must have been our cousins. But she exclaimed that this was the strangest wedding. Everyone went out into the country and sat in a square. No one spoke. There was no music. There were no flowers or attendants. Finally one man in a stiff black straw hat stood and asked them a couple questions about their intentions. And that was it. No kiss. No dancing. Mom nudged Dad and said "That's not how I want to do it!" Or something like that.

Finally Mom was out of steam. We had covered topics from music to family to travels. It felt almost like the countless hours we have spent talking just this way over the years. She shuffled with help back to bed, and we left her with her ear bud in and CD story winding.

Don't call till after 5

"Oh, I forgot to tell you," my sister emailed me. "The steroids they are giving her might make her crabby."

A couple weeks ago, Mom started mentioning that she was feeling more confused than usual. Our regular email correspondence dropped off considerably, and when answering the phone, she sounded like she had just woken up.

These are not necessarily causes for concern. She is 82, and had gone through one round of radiation therapy a couple years ago which had depleted her once formidable energy. Most of her days since then have been spent listening to audio books she gets from the local library. She can actually stay awake long into the night listening to a good story. Imagine. Sometimes listening in the middle of the day, she will get so transported as to be almost in an altered state, which is shocked back to reality by a phone call. Also, her computers over the years have invariably gotten slower due to her lack of upkeep with spy ware and such, so sometimes she goes for long periods not emailing or responding to our messages.

But then she told my sister she couldn't use the computer. "Why?" sister asks. "Because I can't type," Mom replies, to which sister asks "Why can't you type?" to which Mom answers, "Because the letters don't make any sense and my right hand is numb." Couldn't play piano, couldn't write a letter, couldn't remember what she was going to say, or had just said.

So the MRI that was scheduled anyway for March took place the next available day, and that's when we learned that there were multiple lesions on Mom's brain. Actually I think my sister called them "spots" - they might be tumors, they might be mad cow holes for all I know. But the upshot is they had caused her brain to swell up and all the ensuing symptoms.

So here was the good news/bad news situation: They can treat the swelling with steroids/Mom has cancer in her brain. She has elected not to undergo any more treatment, and the window of time is something like eight months. We don't think she will make it that long, and neither does she.

Steroids worked like a charm, and within a few hours of the first dose, Mom was thinking much more clearly, finishing her own sentences even. Talking to her on the phone then was all business. Things to arrange. Hospice, Do Not Resuscitate orders, notifying relatives, figuring out who to tell what. And no blubbering.

When she was finally allowed to go back home (home being a retirement village where meals are served in a fancy dining room, and linen service and housekeeping are part of the monthly fee....when she first moved there, I thought- wow, this is it! I want to live here! ) she was flooded with social workers, care givers, and phone calls from her kids and neighbors. I sent flowers pre-arranged in a vase to brighten up her apartment.

"From now on, I don't want any flowers or anything. I don't want to have to thank anyone or fuss with them," she told me by way of acknowledgement. "And I am telling people NOT to call me before 5:00 p.m. You are just under the wire."

Now my sisters always claim I am my mom's favorite. I don't know about that, but I do know that she is usually delighted to hear from me and we have good long visits with lots of laughing and shared memories and this was shocking to be spoken to so gruffly.

Next day, when I mentioned it to my sister, she wrote back "I forgot to tell you, the steroids they are giving here might make her crabby."

I am not five years old and losing my primary caregiver. I am not a teenager losing a desperately needed, though severely abused role model. I am not even a young mother suffering under the curse of "I hope you have kids just like you someday", begging for advice, and looking for a built-in free babysitter. I am a middle aged married woman, happily ensconced in my own career and life, but the looming inevitability of losing my mother can reduce me to a glob of useless goo at any moment of any day.

Grim and Bare It

My mom is dying.

I know, great way to start. I know you are thinking "This promises to be a laugh-riot, just what I want to read to start my day, I will be sure to check THIS blog everyday".

No?

Well then, maybe the reason to have a blog is not so much to entertain and engage with readers, but to engage with self. I know I am not the first person to lose her mother to cancer, but it is the first time I have lost a mother to cancer. There is only so much speculation, introspection, and general wondering and feeling that friends and husband (no matter how wonderful and loving) can be expected to absorb. So I think that if I write and write here, I can gain some peace for myself, and maybe, just maybe, connect with others who have stories to share of their own.

If either of my two sisters were writing this, you could be assured of some acerbic wit and hearty chuckling. I am not funny, but I will be sure to share with you any of their funny bits, and try not to claim them as my own.

Mom has told us "no blubbering", so I will not blubber to her, but I might to you.

So, that's it for now.