In Memory… Category

Paisley Bartholomew Scholarship Fund

29 Sep 2014 In: In Memory...

Evan Sherow and I had been discussing setting up a memorial scholarship fund for my brother’s daughter, Paisley. Evan (thank you!) has now set up an account through the Utah Educational Savings Plan (UESP), which works through the state-administered 529 savings program. University Veterinary Hospital & Diagnostic Center (where Charles was a veterinary technician) has already stepped up to be a contributor. Please join in donating to this fund, if you are so inclined.

Charles and Paisley

Charles Bartholomew (Mary 22, 1975 – September 25, 2014)

Since Evan is in the process of moving to Kansas, you can donate funds that I will transfer to her (and thus to the account) through PayPal.




Thank you!

Now Comes the Night

5 Apr 2012 In: I Have Learned THE HARD WAY, In Memory..., LIVESTRONG

Yes. It was “all about me” in the first place. It was one of those deliciously selfish, “Why can’t I have this?” songs. My wallowing in it – my interpretation – was a lovely version of “But WHAT ABOUT ME????”

Then came that endless week – not even a week – when my Grandma was slipping away. And, no, she was not leaving gently and romantically, but struggling for breath and crying out in the night. I’m sorry, but I will never “pretty it up.” I cannot.

They forced me to go home at some point each day so that I could try and sleep without one eye open and listening intently all the while. This was the song I listened to as I drove back and forth to her condominium. And the very first time I heard it during that time, it became HER song. It was my promise that I was there all night, every night, even if I didn’t know how I could truly ease a journey like that. I don’t know if my words and my singing were irksome or soothing. And at this point I most certainly must not second guess it any more.

I thought about you a lot this week, Grandma, and I told the story of being with you when you left this world. I tried to explain what a privilege it was, yet how I struggled with the idea that ANYONE, especially someone who’d been so patient and lived through the most unimaginable tragedies and joys, had to die that way.

I stood in the LIVESTRONG Headquarters in front of the manifesto and looked at your beautiful ring that I only take off to shower and I cried again for you and for all the collective loss suffered by that amazing group of people. Then, because there was ALWAYS someone to put their arm around you in such remarkable company, I cried for the beauty of a singleness of purpose in which we try to make the world better.

And since that first week of January, 2009, it has remained your song:

When the hour is upon us
And our beauty surely gone
No you will not be forgotten
No you will not be alone

And when the day has all but ended
And our echo starts to fade
No you will not be alone then
And you will not be afraid
No you will not be afraid

When the fog has finally lifted
From my cold and tired brow
No I will not leave you crying
And I will not let you down
No I will not let you down
I will not let you down

Now comes the night
Feel it fading away
And the soul underneath
Is it all that remains
So just slide over here
Leave your fear in the fray
Let us hold to each other
Until the end of our days

When the hour is upon us
And our beauty surely gone
No you will not be forgotten
No you will not be alone
No you will not be alone

Oh, Grandma, I think I need it back – just for a bit. I know the danger of self-pity and wallowing (yes, I know – WHAT???). But I need to find the hope; I need to find it in myself and then believe that I have enough value that someone will make this promise to ME at some point in my life. I promise it will be about you again. Or perhaps someone else who needs, in the dark, to know that someone is there to hear them when they cry out.

Sleeping with the Diamonds On

6 Jan 2010 In: Blood is Thicker..., In Memory..., LIVESTRONG

One year ago I knew my Beloved Grandma would die today. I recognized the signs. By evening, when everyone else had left for the day, I was dosing her with the appropriate medications hourly. I intended to do it all night if needed. It was not necessary.

I’m still second-guessing myself; I find so many things that I could have done better – I could have made my Grandma more comfortable AND comforted. I know I must let it go, but the sound of a voice crying out in pain and confusion stays with you.

I sang to Grandma. I sang with more intensity than I think I’ve ever mustered; I sang with every fiber of my being. I wanted to sing the Pie Jesu from Fauré’s Requiem, but I couldn’t get my Mother’s voice out of my head. She sang it so beautifully at the funeral of Helen Ann Williams Pawlowski, one of the other dear Mothers of my childhood. And she told my wonderful Pamela, who always was a sister, really, that she was not an orphan; she said she’d be her Mother, too. You cannot sing when you remember that.

So I played it for her. And then I started In Paridisum on a loop. But you always think there is more time. I’m glad I had leaned down close to her ear and touched her face and given her my thanks, all my love and told her to go to my Grandpa, for he had waited almost sixty years for her.

Though I didn’t know it until a few minutes later, I heard my Grandma’s last breath, just as I walked from the room to get doses of medication. When I went back into the room less than a minute later, I stood there with my hands full of syringes of liquid medication – just stood for few minutes at the side of her bed. I thought she might start breathing again (it happens) but she didn’t. I went and put the syringes down and came back to check her pulse. 11:55 p.m. January 6, 2009. Time of death.

I called my Mother. She was not surprised. I called hospice. I received, by some miracle, a call from my friend Grettir before anyone showed up. Bless him for having miraculous timing, compassion and patience when my life falls apart.

I had the privilege of helping the hospice nurse prepare my Grandma’s body for the Funeral Home. With reverential care she pulled the access needle from the port and removed the other tubes, we took off the cannula, she cleaned my Grandma while I helped move her body, and finally we put on a clean gown on her. She had to dispose of all the medications and she left. The funeral home gentlemen came and before they zipped up the home-made quilted shroud, and though I knew she was gone, I kissed my Grandma on her cool, smooth forehead.

I might protest at this juncture in some other entry that I had a point. I’m not sure that I do, unless it is to say that some moments in your life will never be forgotten. And many of these moments are ingrained on my psyche forever.

I had entries written in my head for my Grandma’s birthday (in JULY) and for other occasions, but they never made it to the page. Well, the title did. For when I was alone a year ago tonight – so alone – after they took my Grandma away and my Mom left, I didn’t know what do to. I had decided to stay with Lucy, her cat. That’s when I looked at her things. That’s when I laughed at some of the “collections” and cried at the beautiful letters written back and forth between she and my Grandfather.

I put on her anniversary band – ten diamonds in a band of white gold. She bought it herself on her Fiftieth Wedding Anniversary and it was the ring I remembered her wearing the most in the last decade. She was a little embarrassed that she’d purchased it for herself, but we all reassured her that my Grandpa would have wanted her to have it.

The ring is mine now. At some point after her Birthday, I started wearing it not just regularly, but night and day. My LIVESTRONG™ and other wristbands are a fixture as well unless I’m showering or the like. The most recent, a colo-rectal cancer wristband sent to me from Germany – a gift from my beloved Soul Sister, Henrike, was purchased in my Grandma’s honour.

So day and night, I wear my Grandma’s ring. I sleep with the diamonds on, because I cannot forget one year ago tonight. Nor can I forget a lifetime in which my beautiful Grandma was always, ALWAYS there for me. I will love you forever, Grandma.

EVELYN MONSON LEE
July 9, 1926 – January 6, 2009

A Year Ago Today

3 Jan 2010 In: Blood is Thicker..., In Memory..., LIVESTRONG

A year ago today I was sitting with two hospice nurses in my Grandma’s bedroom. She was sitting on the edge of the hospital bed that had been delivered earlier (which the delivery man so kindly switched about with me AFTER the frame was put together so it faced the “right” direction). My mom was in Kansas. My uncle was on his way from Washington State.

One year ago today the nurses were asking her questions. She could answer some. I helped with others. She could scarcely make a mark on a piece of paper any more unless we gave her a marker instead of a pen; she was so frustrated.

One year ago today I wanted to be able to tell them there was no time. While the nurses were wonderful – knowledgeable, kind, honest, comforting – I sat wishing there had been time to say, “THERE IS NO TIME. She will not be alive by the time the musical thanatologist can be here. She may not make it to the day that she could have a bed bath. She won’t be able to speak – literally speak – to the counsellor. Ah well.

One year ago today is somewhat a blur, though some moments have stayed stayed with me with such clarity that I feel like it was yesterday. I remember rushing through the drive-through at Wendy’s because it’s so close to the condo and I’d only had coffee that day. I remember finding bedding for the hospital bed and thinking that I was making the bed in which she would die. I remember that the weather started out clear but SO cold. I helped the medical supply delivery man carry things up the stairs. He kept saying I needn’t help, but I said I didn’t mind. I needed to do something.

One year ago last night I had stayed at the hospital after Grandma was admitted after that endless day in the ER on January 2, 2009. That was after she’d been on the floor for possibly hours. I was supposed to take her to an appointment and she didn’t answer the phone to tell me when. I think I knew on some level that she was NOT just getting ready. I don’t think I didn’t wanted to call the paramedics again. I think I knew it was the end. I should have… I should have done many things. But I must lay that to rest. I know I must.

One year ago yesterday: All day in the ER. Scans, blood tests, more scans (some I kept saying, “she’s just had those”), more tests… Calls to her oncologist. The first time in my life I’d EVER seen my Grandmother confused (she was completely with it even when in renal failure months before that). And late that night, the doctor and intern asked me to come out and speak to them. Then they thought better of it. They came into the room and I stood across my Grandma’s bed from them while they explained that there was unusual and horrifically rapid metastasis from the lymph nodes (about which we knew) to her lungs and to her brain. I remembering covering my mouth with my hand; I don’t know why. What could I say?

One year ago last night the doctor and the intern said that her oncologist said that she could have part of the transfusion that had originally been planned for the day if she wanted it. It was established that it might make her feel a little better (and somehow they let me know that it was not cruelly life-sustaining). She said she’d take it. Then we waited, again, for another doctor to admit her. I had to step into the hall and called to tell my Mom that she had to come home right away to see her Mother before she wouldn’t know she was there.

One year ago last night SO many calls then and the next day in the halls of the hospital. One so that my meds could be brought so that I could stay with her that night. Many others to family, to her church, to ask my older sister which hospice she’d been researching. I was on the phone, huddled against the wall, weeping – I don’t know who I was talking to – and I remember one of the social workers (was it a nurse?) coming by, putting their hand on my shoulder for a moment, and walking on.

One year ago today this morning, the oncologist, wearing his University of Utah Hoodie, stood in the hall with me while they were x-raying an injury of her arm. The process was hurting her. And he just sensed what he could say to me. He said, slightly exasperated, “What are they going to do if it IS broken?” He told me that he was really surprised about the metastasis. He’d seen her on New Year’s Eve; she’d walked right into the office. He thought there MIGHT be spots on her lungs. He studied the films (which were a few weeks old) at length. But he also knew she had had pneumonia.

One year ago this morning he said, “She has a few days to a week.” “Probably closer to a few days, as she’s not eating [hadn’t eaten in the ER and had only had a popsicle in that day].” Then he walked into her room, told her she looked horrible (which made her smile and almost laugh). He said, “Let’s get you out of this horrible place. We could radiate the brain tumor, but I don’t think it would give you much. I think you’re very, very tired and want to go home.” She nodded.

One year ago today, because of some blessed miracle, bureaucracy took a back seat. The necessary equipment was arranged for delivery. It was acknowledged that I could stay the nights with her, so the hospice team was contacted and scheduled to arrive. I barely had time to get back to her condo and figure out where to put the equipment before she was transported home.

One year ago today my Beloved Grandmother came home to die. And one year ago today I promised her she would not be alone.

Being There

4 Feb 2009 In: In Memory..., LIVESTRONG

March 5, 1949 was the worst day in my Grandma, Evelyn Monson Lee’s, life. A Chaplain from the Air Force came to tell her that her husband, Charles Shirley Lee, had been killed in a horrible plane crash at Promontory Point along with four other young men. She did not remember that details of that day – or many of them for a while thereafter. We only know these details from her relatives and a letter I recently found from that Chaplain. She was five or six months pregnant with my Uncle Chuck. My Mother was not yet two years old.

After Chuck was born she sat for about a year in her in-law’s garage apartment and rocked her precious baby boy. Then she got up, went back to school, and prepared to take care of her family. The little family lived for years in Bozeman, Montana in the basement apartment of her parents (wonderful people I was privileged to know until they passed away when I was a teenager) while she finished her education. They moved to Provo where she became a Professor as Brigham Young University in Textiles and Clothing. After both children had married and moved out, she eventually bought a condo in Orem in which she lived through her death.

Evelyn Monson Lee

Young Evelyn Monson

July 9, 1926 – January 6, 2009

This past year my Grandma faced a battle with colon cancer that prompted her to tell my Mother that it was the “worst thing that had ever happened to her.” My Mom had to remind her about that day, almost sixty years ago, when she became a very young widow.

Because she was a widow, my Grandma was always there for us; she attended every birthday, Christmas and special event she possibly could. When we lived in Stanford (where Janet and I were born), she came to visit, evidently prompting a toddler Kate to walk around after she’d gone home repeating, “Oh dear, oh Dear, OH Dear!” When we, too, lived in Orem, and she was still young enough to tolerate a night on our couch, she stayed over on Christmas Eve. In my memory, her overnight bag was just like the tiny valise the Grace Kelly pulls out in Rear Window. She always had silky pajamas and a satin pillowcase (it influenced me so strongly that I got my first satin pillowcases as a child and now I’ll only sleep on a silk pillowcase). Yes, she was always there for us. And she went to Washington state as often as she could so that she could visit my Uncle Chuck, my Aunt Mary Ellen and my cousins.

I wish we could have been there more for her this past year. My Mom did as much as was humanly possible; she is amazing. I helped as I could. And Grandma was accustomed to being alone and sometimes preferred her solitude. She had always been shy. My Mother said at Grandma’s funeral that she didn’t think she’d ever have married had my Grandpa not inadvertently been “put in her way” when he was a lodger at their house when he was working in Bozeman.

But she was afraid. Her “normal” anxiety was naturally magnified; she was so frightened.

I’ve gone through some of the details from the beginning of her diagnoses, but for now I’ll skip some of the middle. It was pretty horrible for her, and I can’t say that it was easy for those around her. She was living at home, trying to eat and drink enough, trying to…try. But we were concerned. She seemed too weak, but we knew if she was to go into assisted living she’d give up entirely.

She’d decided that she wasn’t going to take any more chemo despite the recurrence of the cancer in her lymph nodes. She couldn’t handle the idea and theoretically her prognosis, even with treatment, was a couple of years. She’d gone to see her oncologist on New Year’s Eve day so that he could give his assessment of a chest CT that was about three weeks old. My Mom said he studied it and studied it. He decided that she’d had pneumonia while at post-surgical rehab (which was very possibly the case). He told me later that he thought he saw some infiltration but it was really hard to say.

We took her back and forth to Christmas Eve and Christmas breakfast and dinner. She saw my beautiful youngest niephew, Bela, blessed (though later we found that perhaps a decline was more ominously at play because she said to my Mom the next day that she thought she’d driven the wrong way down the biggest street on her way to the chapel). She came to New Year’s Eve and she got sweet, tender hugs from a visiting Paisley. She had New Year’s dinner with us. When my Baby Brother was helping her up the stairs she said something about how she couldn’t see.

On Friday, January 2nd, I was supposed to take Grandma to get a transfusion. We all thought that it would help her strength. My Mom was going out of town, but called Grandma that morning before she left and said she sounded fine. I started calling her to see when the appointment was and kept getting no answer. I think on some level I knew something was wrong, but subconsciously perhaps I didn’t want to face the reaction my Grandma had the first time I called the paramedics to come and get her (though she did go) – I don’t know. I finally just showered and went to her condo. And indeed, she was on the floor, attempting to half-sit in a vaguely comfortable position (she had a pinched nerve in her left leg/hip and had pulled tendons as a consequence trying to shift herself). I tried to help her up; she’s lost so much weight this year and I thought I could do it. But I realized that even if I got her up she wasn’t walking anywhere; she’d been on the floor for hours – she couldn’t say how long for certain. I told her I needed to get help and she did not argue with me. I laid her down for a second with a pillow under her head and called 911. Then, because it was more comfortable, I sat on the floor behind her so that she could lean against me as though I were a chair.

In the ER, I saw something I’d never, ever seen before; I saw my always intelligent, well-read Grandmother confused and unable to remember very basic things. I had been in the ER with her when she was in renal failure and she’d been more “with it.”  They performed test after test after test, including a chest x-ray, a chest CT, a head CT, ultrasound to rule out a clot, a million blood tests. Nothing to eat or drink (which I didn’t push considering the circumstances). The ER physicians consulted with her oncologist, I told them in private that she’d never been that confused and perhaps it was because she was anemic and had been on the floor for too long – she did need oxygen. I also told them that she denied pain and depression (in the best of circumstances). More time passed. At one point she didn’t know my name. That night, the doctor and the intern came in, said, “Let’s step outside” and then the doctor changed his mind and we stepped into the room with my Grandma.

By some twist of fate, I’d been the one to take Grandma to the appointment with her oncologist during which he told her that “it wasn’t good,” that the cancer had reoccurred in her lymph nodes. That night, the two doctors stood across the bed from me, my Grandma looking frail and tired like I’d never seen. They proceeded to tell me that the cancer had metastasized so fast and so far that it was everywhere. It was distending her abdomen, it had completely infiltrated her lungs and it was all over her brain. They had to admit her, as she certainly couldn’t go home as is. They said that she wasn’t really that anemic, but that she could still have a transfusion and might feel a little better. She was aware enough to sign a DNR form with the admitting doctor who said that Grandma would see Dr. Tudor (her oncologist) in the morning.

My Dad and Baby Brother brought my meds to the hospital. I attempted to sleep on one of those hospital chairs. I tried to make sure that they knew not to pull on her left arm and leg if they could help it. I got a bubbler for her oxygen. I’d made a million phone calls in the ER – my Mom needed to come back from Kansas, she needed to call my Uncle Chuck and my siblings. At five or so in the morning Grandma wanted to sit up. I helped her sit on the edge of the bed. I asked her if she wanted water or a one of those little sponges to wet her mouth. No. Then I remembered what I’d heard was “delicious” (the first time she’d said anything like it in six months) when she was in the hospital dehydrated and starved, her kidneys amazingly coming back from failure: A Popsicle. So I got her a blue Popsicle, prepared just as she liked, broken in half in a Styrofoam cup. She could hardly grasp the stick – she kept dropping it into the cup. But that made her all the more determined to finish it (which she did). They brought her pills (the woman takes hardly any pills, really, as it is – I outdo her in that respect at least five-fold). She HATES pills, but she was determined to take the water herself and do the job. She ended up having her gown and her entire bed changed, which just exhausted her.

Dr. Tudor came to see her. He told me very frankly that the change in the chest CT from three weeks prior to to the one from the night before was pretty horrifying. And as for the brain tumors, she had one on the right side of her head that was pushing hard against her brain/skull; this certainly accounted for some of the confusion and loss of memory, not to mention her rapidly declining strength. He said that she had anywhere from a few days to a week, considering that she wasn’t eating or drinking as of then (and it was not kind to push it at that point, obviously, as her body didn’t want it). He asked if we’d arranged hospice and I told him that my Sister had been trying to schedule a visit so we’d have things in place. Bless Shirleen for having thought of it when she did.

He told Grandma “that it was bad.” This was after he’d walked into the room, told her “You [she] look[ed] terrible” and made her smile. He essentially said, “I know you’re tired and you just want to go home. Let’s get you out of this horrible place.” I’d offered to stay with her; at home twenty-four hour hospice care isn’t a reasonable option in this area. I promised her I’d be there. Between the social worker, Dr. Tudor and Applegate Hospice everything was in place within a few hours. I went to her condo where a hospital bed, oxygen, etc. were delivered. Grandma was transported next. Soon two nurses from hospice arrived. She was home with Lucy, the cat who spent the year in anxious concern for her.

After being carried to the hospital bed, Grandma wanted to sit on the edge of the bed. I got her one of her own housecoats (because hospital gowns SUCK). She drank a little juice. She sat there when the nurses from hospice came to do “intake” and meet her. In the ER, she’d still managed to sign some paperwork herself and even lying on her back and in her confused state her handwriting was so much lovelier than mine it’s just a crime. That day, with a regular pen, she couldn’t put enough pressure on a piece of paper to write. When we got her a pen more like a marker she started to take a “test” they provide to see the state of the patient’s comprehension and ability to follow directions, etc. In the meantime, I signed all her paperwork, including a POLST form. We realized at some point that my Grandma was still laboring away at her sheet of paper. I have never seen such a combination of determination and confusion at work. All of the sudden she decided she was GOING TO WALK. She let one of the nurses support her and we asked her where she was going and she didn’t say. She walked into her living room and sat on her piano bench. The nurses left, and she proceeded to watch, with obvious pleasure, Bela crawling on the floor (she throws a little doll ahead of herself and then goes to fetch it).

It was then obvious that she needed to go back to the bedroom, but when I tried to assist her, she gave me her “talk to the hand” gesture and said, “No, NO.” She has employed this gesture for a number of years when she wants you to stop talking – especially if you’re telling a doctor something she doesn’t want them to know – or she’s offered a treatment or anything not to her liking. And though its meaning has always been very transparently, “TALK TO THE HAND,” she imbued it with what I always felt was a Queen of England flavour. Anyway, I was petrified that she was going to fall. I repeated silently a mantra of “PLEASE don’t fall, PLEASE DON’T FALL.” Anytime I got too near her (though I was in some respects ATTACHED to her as I had her cath bag and her oxygen tubing – twenty-five feet of it – and was desperately trying to keep it from tangling all together or tripping us both) she would say, “No, NO!” My sister-in-law reflected later that it sounded like she wasn’t talking just to me, but to the World; she was protesting the meteoric, horrid theft of her strength. She was losing her ability to move as she wanted. Her dominant hand wouldn’t cooperate. She memory – even her ability to speak were failing her as mere hours passed.

My Uncle arrived that night. She was obviously delighted to see him, but she couldn’t say much. I tried to leave them alone. But he is such a private person, and since she hadn’t much she could say, I thought I’d try to get her to take some of her pills (just the ones I thought might make her more comfortable). I knew if anyone could convince her to do something, it would be him. But she wanted to handle the pills AND the water herself. Let’s just say that it was a debacle and those pills were not ingested. She DID let him cut off her three hospital bracelets which she would not let me do. (I guess the image of me coming at anyone with a pair of silver scissors is always frightening, given my history with sharp objects – especially if your eyesight is rapidly failing – must be a horrific image.)

He left so she could sleep, and Lucy and Grandma and I spent our first night alone. She struggled breathing, some, her wheezing was getting worse. For a number of years now, she’s done what I call, “The Hairball Thing,” when dealing with congestion. As to this…phenomenon, I will not elaborate. And it will be my only “delicate” omission (I couldn’t do it justice anyway). She did sleep some; her snoring was comforting when it came. I already felt so helpless. I didn’t know how we were going to ever get her medicated appropriately. They’d left a kit with meds – strong meds – that were in liquid form. I had mentioned that I didn’t know if we’d get her to take anything by mouth and wondered if there was a way to deliver medication through her Power Port without adding an excess of fluid to her system that would merely prolong the struggling of natural organ shutdown.

The next morning, after another visit from my Baby Brother, my Sister-in-Law and Bela (Bela managed to make her smile when nothing else could) I assisted her in sitting up and getting some water. I brought her more than I had intended (I was trying to get it the correct temperature – not too cold, not hot) and a bendy straw as an afterthought. She insisted on holding the cup. She struggled to get the straw to her mouth, but she insisted on drinking the whole glass of water BY HERSELF. I was hovering on her bed, next to the hospital bed, waiting to catch the cup as needed. Several times I thought it was empty and went to take it away. I received WITHERING looks for that, I can tell you.

My sister, Janet, and her family came from Tooele to visit. Janet asked her how she was and she actually said, “So-so.” It was by far the closest she’d come to admitting that not everything was honky-dory. My Mom arrived. She’d had to get up at 1:00 a.m. to make the flight back. I don’t care how old you are, sometimes the most welcome sight in the World is your Mom.

The days were already becoming a blur. Grandma had some Frosty, which she loved, giving me a deep and abiding respect for the Wendy’s® Frosty. Uncle Chuck came back at some point. Eventually, I went home. It was time for clean clothes (after three days – yes, gross) and a shower and a nap during which I attempted to sleep without keeping one eye and ear at the ready. Evidently she insisted on the entire water routine with my Mother that evening and much less than the amount she’d had earlier took a half an hour or longer to finish.

That night was horrible. I promised myself, when I learned about end-of-life and palliative care at The Division of Medical Ethics, that I’d never, ever let someone I loved suffer because of lack of knowledge or resources. I broke that promise that night. Grandma was having more and more trouble breathing. I’d been gradually increasing her oxygen flow, but the infiltration to her lungs was racing along. She would mumble, “Help me, help me…” and then when I went to her and asked what I could do or asked what was wrong she would say “Nothing.” She also repeated, “I don’t know, I don’t know…” over and over and over again. I finally just told her that it wasn’t her fault. I asked her if I should call the hospice nurses and see what we could do to relieve her anxiety, breathing and pain. She kept saying no. I shouldn’t have asked her. I knew she was mentally altered, and I should have called and used the resources available to at least give her some relief from her anxiety. I have never felt so helpless, even though in retrospect I know I could have and should have called hospice.

I had to do something. I found myself sitting on a footstool next to the hospital bed, with a book of hymns and a tiny blue LED flashlight. I sang anything and everything I thought might be comforting. She was trying to tell me something – pointing vaguely past me. I have no idea what she wanted. She seemed to sleep a little eventually. It was a long, long night.

The next day the hospice social worker called, wanting to meet with me and my Mom. We arranged a time, and I explained how concerned I was about Grandma not being able to take pills and her resistance to pain meds in general. He called her nurse, and she arrived that morning. She got Grandma to take some liquid anti-anxiety medication (with some Frosty as a chaser). We moved her for some reason, and it was patently obvious how much pain she was in, so she took pain meds from the nurse.

The days were definitely becoming a blur. We met with the social worker at some point, the hospice aide arrived; she had an appointment to give Grandma a bed bath on Tuesday. I hadn’t medicated her enough and it was a painful process. She slept Monday night; it was a relief.

My Uncle had to leave. The nurse was there at the time and she and I both thought that Grandma was going to break down, but she didn’t. Each day I was sent home to sleep a little and shower and whatnot. Family came and went. Shirleen brought Will’s tiny poodle to visit, as promised. Ironically, HE was dying (though Grandma was too out of it to know that). She petted him a little, and then she and the tiny white dog slept together for a while.

Tuesday I knew that it would not be much longer. She was receiving the maximum amount of oxygen that the equipment would deliver, yet it still took every single muscle in her abdomen to breathe. My Mom and my Uncle had, at some point during those days, both said goodbye in their ways and gave her permission to “let go.” When I stood next to her I thanked her for her life, for being a wonderful Grandmother; I thanked her for being there. I told her she could rest now, told her she could finally go to Grandpa – anything that seemed right at the time. They say, after all, that a person’s hearing is that last sense to go.

I decided that evening that I would just stay up as long as necessary dosing Grandma with the necessary meds every hour. I didn’t want to hover over her every second – maybe I should have – I could have sat and held her hand. Yet second guessing is too easy. At about 10:30 or so I started up my computer so that I could get some lyrics from a song that’s gone through my mind a lot for the past two years; I just couldn’t remember the first part. The crux of the lyrics is, “May you find your way in peace.” I sang it to her then. I sang with more intent to reach her than I’ve ever mustered in my life. Then I turned on Pie Jesu from the Fauré Requiem. After repeating that a number of times I turned on In Paradisum and let it repeat over and over again.

After 11:30 she had stopped breathing once and then started again. I expected that to go on for a while, so at 11:55 p.m.I walked into the kitchen to get another dose of meds. When I came back my Grandmother was gone. I suppose I heard her last breath, but in a final private act, to the glorious strains of In Paradisum, she slipped away when I was out of the room. I stood with all the syringes in my hands for a minute or so, not knowing if she’d start breathing again. I went and put the medicine back, finally, and checked her pulse. Gone.

I called my Mom. Then I called Hospice. They liaison with the funeral home. A nurse arrived, and with great dignity and care she removed the various tubes. I helped move my Grandma as the nurse cleaned her a little and arranged her in bed. I actually was going to warm the bath wipes in the microwave, as the aide had asked us to do earlier for her bed bath. The nurse and my Mother just looked at me when I said, “It’s 15 seconds, right?” Some things are just too unreal. The nurse disposed of the liquid meds (no morphine or methadone, etc. with which to play, I guess). The funeral home men came and removed her body. My Mom went home.

That was four weeks ago yesterday night. I felt strongly that I couldn’t leave Lucy (the cat) alone. Animals know when something is wrong, so she’d had a very long year, too. I’d been keeping somewhat “normal” hours, but I immediately reverted to my bizarre ever-evolving schedule. I couldn’t just go to sleep. I started to look around with an intent to start sorting things; I thought I might as well be useful.

My Grandma, let’s just say, had a weakness for beautiful things – expensive shoes, LLadro, Waterford, Steuben, more books than a library – and a surfeit of dust. I had to take my brain somewhere else, and it made me laugh and shake my head to find twenty or thirty tubes of Esteé Lauder lipstick here and there and everywhere. I found twenty or thirty Sucrets® tins from various eras – some with actual Sucrets® in them and some with what I can only call miscellany. It made me so proud to see some of the amazing things she’d sewn and worn. It was wonderfully nostalgic to find sweaters that my Great-Grandmother knitted. I’d been forewarned, but finding my Uncle’s umbilical cord still made me squeal.

I don’t know how many days I spent there with Lucy. They came the day after Grandma died and took away the hospital bed and the equipment. Funeral arrangements were underway. I went into her storage unit downstairs to get some framed pictures I’d found on another occasion. I happened upon a box full of love letters that my Grandma had written to my Grandfather when they were engaged and he was away working. In the same box was his funeral program, letter after letter of condolence and the cards that had been attached to pages and pages of floral tributes (according to the notations in his memorial signature book). That was heartbreaking. It took me back to the worst day in her life and wonder again how she survived it all. Here’s an excerpt of the first letter I happened to read, which, under the circumstances resonated profoundly:

March 7, 1946

My Dearest Chuck…

Darling, do you know that 16 weeks from tomorrow you’ll be a married man! The time drags by much too slowly to suit me…

I’m so happy to hear that you enjoy your work so much, dear, and that you are advancing and doing well in it. It is nice that you are taking an active part in Church work too. The young man that you are going to portray in the play must really be quite the character. I would certainly like to be there to see you play the part with your “disarming grin.”

I’m so lonesome for you and I long to see you so very much, darling. I only wish that tomorrow could be the 28th of June. I guess the time will be here before I realize it, though. I love you with all my heart.

I really should go to bed now, dear, so that I’ll be able to get up in the morning. Please be very good and take good care of yourself for me and please write very soon.

All my love, always,

Evelyn

After the funeral, (right before which I slipped a small black, ceramic poodle into my Grandmother’s casket), I slept most of each day, spent part of the wee hours with the computer and hackneyed syndicated television shows. The hours in between I devoured murder mysteries with a fictitious Jane Austen as the heroine (combining two of my Grandmother’s favourite genres: Regency fiction and mysteries). Then I drugged myself to sleep. I’ve been the very portrait of dissolution.

I don’t know what’s been plaguing me more: Broken promises and dwelling on “I should have…” and “I knew better.” Or, in the very throes of self-absorbed thinking – particularly, the idea that I will die alone (oh yes, it’s all about ME). I mentioned this in passing (and tears) to my Mother, who, having plenty to do without indulging my newest self-induced despondency, proceeded to tell me a story about someone who had no children or spouse who had a niephew step up and take care of them as they died. From this I gleaned that the nugget of wisdom that I was to take with me was the following: I must start buttering up my niephews now and figure out who will be the most likely to take pity on me and preserve me from a completely solitary demise.

Another thing that torments my brain is this: NO ONE should ever have to die that way. I don’t mean to disquiet the many people who I know have lost their loved ones in this manner. Yes, it was a blessing that my Grandmother’s death was “fast.” Like I said, I cannot fathom what a prolonged deterioration would have done to her. And because cancer is still a constant and malevolent presence, it is a blessing that healthcare professionals are coming up with an increased awareness of services such as end-of-life care, palliative care and hospice, and the necessity of the improvement of this work. Management of pain is much better than it once was, the stark facts of the process of death are more well-known (thus averting unnecessary treatments that can sometimes even cause pain rather than prevent it), and patients – ideally – are receiving respect and their wishes are honoured when possible.

And I should say right here that I cannot state strongly enough what a godsend the hospice caretakers were for my Grandmother (partly in their support for me and my family – in helping us know what to do); they were incredible. They are angels. I must also express my gratitude for the numerous nurses, aides, technicians and the caring and skilled oncologist who cared for my Grandma. She was so lucky, and by extrapolation, so were we.

BUT, it’s not okay that my Grandmother became a statistic – one of over 560,000 Americans who die each year of preventable cancers. It’s unacceptable that she had to suffer the effects of an insidious and wanton replication of those errant cells. In the end, she lost basic abilities, speech, movement and memory – at first day to day and then hour to hour, and then, it seems, moment to moment. She was SO frustrated. And while we eventually were able to ameliorate some of the effects of the pain, anxiety and trouble breathing, I sat and watched my Grandmother, having had the best care possible, and being afforded the opportunity to be in her own home, struggle with every single muscle to breathe – taxing her already damaged abdomen and lungs. I saw the consequences of her brain tumors as they robbed her of the most basic human capabilities and, I cannot doubt, caused her extreme pain. It is deplorable to know that advanced metastasis in so many cancers, as was hers, drown a person in fluid that collects in a patient’s lungs and other tumors take over their very most basic of actions and thoughts. It’s not right.

Grandma said, not more than two months ago, with only partial facetiousness, that she was going to live until she was 120. She could have approached that goal. She was in such amazing health EXCEPT the cancer. Her strong, kind heart would have kept beating for many, many years. She was robbed and our family was cheated.

Evelyn Monson Lee & Charles Shirley Lee

The Wedding of Evelyn Monson Lee & Charles Shirley Lee

June 28, 1946

But this isn’t all about my soapbox; I will leave most of the intricacies of that for another time. Today, on World Cancer Day, I honour an exceptional life. This is about an anxious and shy young woman who met an extraordinarily handsome, funny, affectionate man who changed her life and would have continued to do so, had he not been stolen from her when they were just getting started. It’s about a woman who did not let this horrible tragedy damage her life beyond repair. It’s about a woman who had the strength to mange her fears so that she could educate herself and provide for a family. It’s about a woman who balanced a career (at a time when it was just not done) with motherhood. This is the story of a woman who was a wonderful mother (and grandmother and great-grandmother). It’s about a woman who was not naturally inclined to social pursuits keeping strong connections with her husband’s family as well as her own so that her children could know about their Father. It’s about a woman, not innately social, who had friendships that extended through many, many years and who respected differences in personality, religion and ideas. This concerns a woman who was still in regular and loving contact with a friend she’d known since she was three or four. It’s about a woman with fine talents who, despite her extremely shy nature, developed and shared those gifts for the gratification of others, and, I hope, herself. It’s about passing the deep love of the the arts and education to her children and, in turn, helping them develop their own talents. This is about a woman with music in her soul who passed that love through her children to her grandchildren who pass it to their children – an endowment of four generations.

I’m still in rather a fog. I’m trying to deal with the loss and the guilt and the sense of unfairness. One of the nights I was there Grandma said, “Don’t leave me alone.” I promised her I would not – I would stay with her – and I did keep that promise to the best of my ability. I hope I was worthy of the task. It was an honour to be with her, in spite of my feelings about the injustice of it all. And if I forgot to say it before, in the mist of those surreal circumstances, I will say it now. Grandma, thank you for always being there. Thank you for being a wonderful grandmother and an amazing person. I miss you every day. Also, I want you to know, that despite the nebulous quality of my convictions and beliefs (or lack thereof), I know that you will be together with Grandpa. It’s not about rationalization (though I am skilled, indeed, in that quarter); I just know it must be so. You’ve waited so long. He’s waited so long. I cannot conceive of it any other way.

I know this is an unforgivably long entry. I was going to cut it. Unfortunately, my brain is just not working that way. So here it ALL is, sprawled out before you. I look at it this way: I’ve not written anything in months, so people can take the next three or four months picking away at this post if they wish.

I’m going to finish with a bit of poetry. I talked about how frustrated and afraid my Grandmother has been during this past year. Still, I found a bookmark on the table next to my Grandmother’s favourite chair – the one she’d been practically living in – with this Dickinson verse on it:

HOPE is a thing with feathers
That perches on the soul,
And sings the tune without the words,
And never stops at all.

Forever and Always

7 Dec 2007 In: Celebrate!, In Memory...

Every year without fail, from somewhere – I don’t know exactly, I get a birthday reminder for Syd – a week before, another a few days before. I know I subscribed to some service eons ago that sends me this message, but I don’t get the reminders for anyone else. No one. And I won’t cancel it.

Her’s is one of the handful of phone numbers in my mobile directory that I cannot erase. I just can’t. Her obituary and some of the newspaper articles written at the time are still on the kitchen bulletin board. They’ll stay; I don’t know how long.

Syd at Her Best
Happy Birthday, Syd.
You will be missed forever and always.

I stole this picture from Hobie. I hope she doesn’t mind. My thoughts are with you, my dear, and your family!

I don’t know what play is pictured, I don’t when it was painted, but it feels like it’s every show, every time.

Go PINK for October

30 Sep 2007 In: In Memory..., LIVESTRONG

Yes, I’m a copy-Kitten-Child. Grettir said he was “going pink for October,” so I had to find out all about it. Google it, and you find, among a myriad of links, Pink for October.
Go Pink for October

And in the time it took for me to muck up my site imposing the “Hills-Pink” template on it and (sort of) fixing it again, Grettir had established “Team Tiny Pineapple.” That’s why he’s the guru. As for going “pink,” it’s really very simple and doesn’t involve ANY STRIPES WHATSOEVER – I promise:

Take part in Pink for October, a campaign to help raise awareness of, and money for, breast cancer research as part of National Breast Cancer Awareness Month. Please join the Tiny Pineapple Team and help raise money for Susan G. Komen for the Cure.

Sunday afternoon we received a call that my Uncle Ron would die that day. His final diagnosis included extremely advanced liver cancer, lung cancer and esophageal cancer. Concerning the rest, either his family thought that was plenty to share with us, or the possibility of the pain associated with continued examinations made them unwarranted. As for his prognosis, if you know anything about end-of-life care, you know the sorts of things that lead a physician to tell you that the patient will die that day. If you don’t know, it’s best left as I would describe it – unimaginable. Nevertheless, Uncle Ron lingered on until Monday night.

Evidently, the week before he died he felt relatively well and was in good enough shape to attend the funeral of a friend and enjoy the company of his family the day before he entered the hospital. That night, before his hospital admission in the morning, he spoke for the very last time. “I Love You,” he said to my Aunt Joan.
A. Ronald Henderson
May 7, 1934 – June 4, 2007

Uncle Ron was a professional photographer for many, many years. His obituary says:

Ron’s life passion and hobby was photography, and [he] had the unique pleasure of doing what he loved. As owner of Ashton Henderson Photography, he took great pleasure in capturing the beauty of nature and creating lasting memories with his portrait work.

And, I guess, in the true spirit of always being the photographer, there was no picture with his obituary (also online for the time being here) and I haven’t any with me.

But he took countless photographs all those years – a legacy of images. Here are a very, very few examples:
Mom & Dad, September 10, 1965

Above is my parents’ very favourite picture that Uncle Ron took on the day of their wedding, September 10, 1965. So they took the original and hung it on the wall (without glass). The resultant sun damage, stains and scratches are very pronounced. When Uncle Ron learned that we wanted to use enlargements of their wedding pictures for my Parents’ Fortieth Wedding Anniversary and that the best-loved image was damaged, he found the original negative and made a new print (from which I made a SCAN for them to hang). Unfortunately, I have yet to manage a good scan of this picture; I will try again:
Mom & Dad, September 10, 1965
Mom & Dad, Anniversary Picture
Mom & Dad, September 10, 1965

I cropped the black and white photo above from one of the portraits Uncle Ron took at Mom and Dad’s reception for their Anniversary invitation. He took a great assortment of coloured and black and white images on that occasion.

Uncle Ron also took all our family portraits. For some odd reason this is the only one I have on my computer at the moment:
My Family: Kate, Karen, David, Shirleen, Calvin, Charles & Janet
My Family, Circa 1979

Uncle Ron, naturally, cannot be held accountable for any wardrobe or coiffure choices. Nor can is he responsible for any vaguely cockeyed looks; it’s a small miracle to take a picture in which my eyes AND my father’s are open.

I will miss you, Uncle Ron. I look back fondly on the trips the families used to take – staying at The Homestead, going to Yellowstone or The Tetons or to Bozeman. I love the memory of that blue Sears jumpsuit you used to wear and the gallant protection you afforded us from that gander which landed you “in the drink.” When I see all the pictures you took, the weddings, funerals, the family gatherings – all the rites of passage it seems – I shall always think of you.

For quite a long time, when someone was dying or had died, a particular song has come to my mind – a lovely piece called “Mark’s Song” by Eastmountainsouth.

Here are the lyrics, especially for Glen, for Kari, for Grandma Wanda’s Charley, and for Uncle Ron:

 

may your soul be blessed
may your body rest
on the mountain where you were born
may your spirit soar
where there’s joy ever more
may you find your way in peace

and there’s no more harm
in your Savior’s arms
see you fly away in the sky
did you hear the call of angels one and all
may you find your way in peace

may you know you’re loved
may you shine above
on the mountain where you were born
may your spirit soar
there’s no pain anymore
may you find your way in peace

and there’s no more harm
in your Savior’s arms
see you fly away in the sky
did you hear the call of angels one and all

may you find your way in peace
may you find your way in peace
may you find your way in peace

May you find your way in peace, Uncle Ron. And may you find peace, Aunt Joan, Kevin and your family, Janell and your family, and my Grandma L., as well as those members of Uncle Ron’s family I do not know.

“To know her is to love her.”

18 May 2007 In: In Memory..., LIVESTRONG

My dear friend, Gayle (Kari’s sister), said it best, “Anyway, to know her is to love her…” I cannot imagine a single person who could disagree with that statement.

On May 15, 2007, after a long but uplifting day of cancer advocacy training in Washington, D.C., for LIVESTRONG Day® (which was Wednesday, May 16, 2007), I read my email. There was a message from Gayle. It said, in part, “I just wanted to let you know that my fantastic and awesome sister, Kari, has finished her fight with cancer. I will miss her so very much.” Indeed, everyone will miss her.

Kari Kay Terry Mason

Kari Kay Terry Mason

March 27, 1968 – May 14, 2007

I thought about Kari and her family a lot on LIVESTRONG® Day. And it couldn’t have brought the “mission” of our efforts into sharper focus. I was part of an advocacy group from all over the country fighting for all stages in the battle through and against cancer: Education, screening and treatment FOR EVERYBODY WHO NEEDS IT, as well as survivorship care, and, if the battle reaches an untimely conclusion, end-of-life care.

Thank you so much, Kari, for being such an inspiration in life and even beyond. Your legacy will continue to motivate and encourage people with your radiant and extraordinary spirit.

If you’d like to read more, please refer to the following:

  • Kari’s obituary in The Deseret News
  • Kari’s obituary from The Daily Herald.
  • Kari’s obituary on Senicare.com.
  • Please visit The Kari Mason Fund website:

    Kari was a unique individual with a sparkling personality and a selflessness that somehow intensified as her pain increased and her physical condition deteriorated.

    In lieu of flowers, Kari’s family would appreciate donations through this site to help pay medical expenses and support the future needs of her miracle daughter, Ellie.

  • When you visit The Kari Mason Fund, please follow the link from “Her story” to a wonderful article about Kari and her family, “Live Like You Were Dying,” featured in Wasatch Woman.

UPDATE, 9/13/2009: It seems that the links to the Kari Mason Fund are not functioning. I’ll check with her family and see if this charity exists any longer.

The link to “Live Like You Were Dying is also non-functioning.”

UPDATE, 11/17/2009: The Kari Mason Fund no longer exists.

The aforementioned article, “Live Like You Were Dying,” is no longer online. I have, however, requested and received a hard copy from the Wasatch Woman that I will scan and post as soon as possible, as well as a follow-up article about her family from July/August 2008 that they graciously sent as well.

Goodbye

2 May 2007 In: In Memory..., LIVESTRONG

Farewell, Sweet Little Lark (1990 – 2007).

I’m sorry if I let you hurt longer then was necessary. I didn’t know you had breast cancer. I didn’t know you were dehydrated, too, on top of your other symptoms because you kept using the “pee pads.” I’m so very sorry.

This week I’ve done some things I never thought I’d have to do alone. Thank you for putting up with what was undoubtedly at least partially misguided attempts to minister to your needs. Bless you for seeming unfazed in the car as we drove to the vet and as they examined you. I came back after they put the IV in and I held you while they injected the medication into the tube. You were still so calm; you must have been hurting. Your tiny head dropped right to my shoulder. It was so fast; I found great solace in that. I’ve seen death, but I’ve never been through that experience before.

I believe you had a good life. Rest in peace, wee little puppy.

Cheese Wisdom

“A cheese may disappoint. It may be dull, it may be naive, it may be oversophisticated. Yet it remains, cheese, milk's leap toward immortality.”
— Clifton Fadiman (1904-1999)

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