I haven't written much about my mom this last year. I wrote a diary when we realized she no longer knew us as anything more than people who were kind to her, The Hardest Death To Watch (There was an earlier one, but it won't link.) I got so much support and understanding from people who had had similar experiences, and although many of them are no longer posting here, some are still around and I want you to know mom is gone.
16 months ago we had to admit that her care was beyond our capabilities. We couldn't keep her safe. I yelled at her when I saw her reaching bare-handed for a roasting pan just out of the oven. I scared her, hurt her feelings because she no longer understood hot or burn or be careful. We knew we could no longer trust that she'd stay close to home. We couldn't base our predictions of her possible behavior on the experience of other people because it wasn't Alzheimer's or senile dementia, it was vascular dementia, which I still don't fully understand. She lost memory in fits and starts. Somewhere along the line she forgot dad was dad - he was her boyfriend or the man. She denied ever being married, and didn't understand that we were her children, although I did have a special place as her sister for several months.
She had already been accepted for Hospice Care based on a cardiac event - not a heart attack, a sudden drop in heart rate and BP that would either gradually return to normal or would lead to death. The cardiac issues combined with advanced dementia meant we got a ton of help, via Medicare, but ultimately we just weren't confident we could manage her as she deteriorated further and further.
We were fortunate/lucky/blessed to find a local woman who had a long history of running nursing homes in Alaska, primarily for dementia patients, mostly alcohol-related dementia. She took a maximum of 3 patients into her home and provided end-of-life care, and for her mom was a piece of cake. No hostility, no rages, just sweetness (overlaying a powerful determination to do what she wanted without getting caught). When mom moved into Martha's home she was, effectively, a toddler. Watching her devolve was very painful. Somehow she managed to keep being able to feed herself, but in all other ways she gradually became infantile.
We had no true communication with her over the last year - no sentence fragments to parse for meaning, not even garbled words. She smiled, she hummed, she drummed and chanted. I got into the habit of just sitting there next to her, stroking her head or her arm. Some kind of contact. I needed some sense of being there and of being recognized as present in some way. I looked for any tiny sign that she knew me, rarely saw one.
I sometimes wish I'd visited more, sometimes am grateful I was free not to watch the destruction of my mom's personality, her wit, her charm, her giftedness. I could make a case for guilt, I choose not to. There's nothing especially loving in watching someone you love become something not. There isn't really a way to describe it - just a not-ness.
I've helped care for Alzheimer's patients. Those I interacted with still had words, still had memories of their early lives. They might tell the same story a hundred times in a day, but there were sentences, and feelings, and some sense of the human being and doing who inhabited this body. With mom there were no longer any memories, or words. There was the chanting, which was interesting but meaningless. There was drumming, again interesting, odd rhythms that must have made some kind of sense to her, or maybe not. Maybe it was just an activity that let her know she was still there.
I hate dementia. I hate the loss. I hate that the body remains, everything else that made that person a person leaves.
In mid-March we got a report about a UTI and subsequent treatment from the Hospice Nurse. A few days later there was another call, this time about mom refusing to eat. I visited after both calls. The first time she was just mom at Martha's, the second I saw physical deterioration. She already had no weight to lose, and this time there was no light in her eyes. She looked drawn, colorless, and was obviously uncomfortable in the Geri-chair. I moved her into a recliner so she wasn't all slumped down.
(The Geri-chair was a control method - she was still limber enough, though, to slide under the tray and "limbo" upright, often while holding a cup of coffee. Never spilled a drop. They tried various methods of tying her into the chair, ultimately had to accept that she needed constant supervision and would need a walk around the house for 15 minutes before she could be returned to the chair after an escape.)
This day she was so weak and listless I couldn't see any need to keep her constrained, and she fell asleep as soon as I moved her and reclined her. Martha talked about a possible intestinal blockage being the cause of her lack of appetite, and was trying to get the doctor to okay enemas or suppositories. I objected to anything that intrusive and painful.
The Nurse called the next day to tell us that the mass in her belly was most likely a tumor - not the right placement for intestinal blockage, and too hard. They were willing to try stool softeners, but she appeared to be entering the stage called "dying." The next visit I went equipped with a doughnut, the absolute no-refusal food for mom. She took a bite and pushed it out of her mouth, as a baby does with a new and non-sweet food. I called all the local sibs and told them she was failing and we should see her as often as possible if we wanted to.
The vigil began that day.
The next morning I arrived to find mom in the Geri-chair again. "Hi mom, how are you!" She looked vital and alert. Another false alarm? She said "I thought I was dying." A sentence, one that made sense, one that was appropriate. I tried to remember how many months it had been and couldn't. Too long. I said "So did I, but you look good today." Garbled nonsense words back. My sister Cathy walked in few minutes later. "Hi mom, how are you doing?" "Well, I don't really know." I saw the shock on her face, and the hope that must have shown on mine earlier. Then more garbled sounds, no more words, and after an hour she started to slump down and twitch around, obviously uncomfortable again. We switched her to the recliner again, leaned it way back, again she slept, this time with mouth dropped open, skin tight against her skull. Dying, that look of dying.
We sat with her for a few hours, then left. I called my best friend and told her about the almost conversation, how much it made me hope she wasn't completely gone. She very gently mentioned the rally before death. I knew she was right and wanted her to be wrong. I wanted some more time with a mom who spoke to me, even if she didn't know for sure who I was.
The next morning, no mom in the chair. Martha told us she was still in bed. She was, on her back with both knees raised. God she's so thin. She was clearly uncomfortable, so I asked about her last dose of morphine. It was ordered, every 6 hours, or more often PRN.
No morphine was administered, she wasn't in pain.
No Martha, you don't understand. This is the woman who had a gangrenous gall bladder that damn near killed her because she didn't want to be a bother when dad was having problems with his legs. She won't moan, she won't admit to being in pain. You watch her body. When she's twitchy like this she's trying to move away from the hurt.
A call to the Hospice nurse, an order for morphine every 3 hours, regardless. A chat about how some caregivers think morphine kills people, Martha may be one of them. Supervise the meds as much as possible. A long, lonely day, bedside. I held the top of her head. It seemed to comfort her. Finally, something that made me feel remotely useful!
I told her how much I appreciated all the things she taught me. When I left home I could cook, clean, do laundry efficiently, manage a household. Of course it took some time to quit cooking for 9 or more, but hey, at least I was always ready to entertain. I can sew, knit, crochet, embroider. I am a hell of a baker. I know how to choose the best produce. I'm a natural organizer, systems make sense to me. I'm in demand among my friends for those abilities, and have run a business that allowed me to make use of those skills, and others.
I am a gifted pianist, and mom's organ books were so well annotated she taught me how to play the organ even though she'd forgotten she was a musician.
I told her how much being in our family meant to me. Somehow, out of many years of confusion, sometimes hatred, sometimes rage, we are a unit, a close-knit family who mourns the end of holiday visits. In spite of diverse interests and abilities, we spend time together well. She and dad may have lacked in the parenting skills area, but they somehow managed to raise 7 loving children despite that, and to inspire us with enough love to be willing to care for them as they aged. That's impressive.
The next morning I found her on the floor. She was hurting enough to twitch herself out of the bed. I created a morphine log, took charge of medication during the day, expected to find that she was medicated through the night. I can be formidable when you fuck with my family. Medication ceased to be an issue.
A long day, with all of us there or present via phone for much of it. I cancelled my various weekly routines. It wasn't a thing, I just needed to be with her. That hand on the head thing seemed to make her easier, and it made me happy. We brought CDs of her favorite music. We told stories about mom, about mom and dad. We marveled at the summer car trips to National Parks, DC, New York City, the barrier islands off So. Carolina.
7 kids in an 8 1/2 year span, and they packed us into the station wagon, pulled a small trailer behind, and took us camping all over the country. We had our own travel schedule - hang out until noon, touristing usually, big lunch at a picnic area, pack sandwiches and fruit for dinner, hit the road. An early evening stop for some serious running and supper, then back in the car for singing, story telling, and lullabies to sleep. Pre seatbelt days, the way back seat was down, the cargo area was padded with quilts and pillows, the 5 littlest slept in a heap, the two oldest somehow fit into the back seat. I remember hearing mom and dad talk about college friends we'd be visiting, sights to see, life in the parsonage, the vagaries of church councils, money, was it time to look for another call. Since I actually was the third parent, and mom's caretaker, I knew far more than was appropriate for a child my age, but then I was never really a child my age. As I got older, I joined those conversations.
The next day had a hard start. Mom in bed, and looking like a dying woman, not a woman sound asleep. Thinner still, paler, parchment skin stretched over those classic bones. I was alone most of the day - everyone else had tasks they couldn't avoid, jobs they had to get back to, albeit temporarily. I was resentful of the aloneness. Might this be the day? We had heard the nurse the day before, on the phone to her supervisor. "Yes, the patient is actively dying." That's the final stage, generally less than a week. Should I call the out of town brothers and tell them? Actively dying. Do they want to be here for the dying part, or for the family together afterwards part? It had to be a choice, both weren't feasible. I called. I debated sleeping on the floor, decided it was a mistake to wear myself out.
Another morning. The bed is messy, needs changing. She needs a clean gown, a clean body, she's bled all over herself, that fragile skin breaks open so easily.
The hospice aides arrive. A bed bath, change of sheets, a difficult time getting her limp body into a clean gown.
The nurse shows me how to use the saliva dryer so mom doesn't choke, how to slide the liquid morphine into her cheek so it drizzles slowly. She isn't swallowing at all, it's been two days since we got ice chips or sips of water into her. We have lubricant for her lips and mouth. It's all about comfort now, the morphine is administered every 2 hours to keep her from thrashing around, bruising herself, breaking her skin. They give us a pulse-ox monitor, remind us that her pulse will gradually drop off, there may be Cheyne-Stokes breathing which can sound very frightening. The rest of the family filters in during the administrative duties. We have new CD's today. The Saint Olaf Choir singing hymns, and Jo Stafford singing American Folk Songs. Mom and dad met in the St. Olaf choir. I can't listen to "Beautiful Savior", I skip it because once I start crying I might not stop. It's a beautiful arrangement, done for the choir, and various family members have been the featured soloist over the years. Too much family, too much memory.
Actively dying. What does that mean? 24 to 48 hours. Can I get through another 48 hours of this? She's an old, old lady in a bed, mouth hanging open, erratic breathing, slow pulse. That's not my mom there that's a generic old lady, too thin, too quiet. My hand on her head, watching her breathe, watching for the rise and fall of the chest, so slight now. Then a long pause. Is this it? How do I feel about that? Do I know? We distract ourselves a bit with more stories. The last Christmas mom was home with us, the doughnut Christmas. We celebrate Christmas Eve, with Norwegian meatballs, a vat of mashed potatoes, Sutsuppe, lefse, green beans (with Tony Chachere to add some zip to an otherwise bland menu), Yulekakke, cranberries because lingonberries are out of this world expensive.
There's much to do Christmas Eve Day, we're all gathered together finally, and my oldest brother brings two dozen doughnuts, because 6 kinds of Norwegian cookies might not be enough, plus mom loves doughnuts. The morning progresses, we forget the doughnuts. There's food prep, and last minute shopping, and wrapping mania. Suddenly Granddaughter Em sees mom taking another doughnut from the box, so filled with surprise and joy at finding this treat! Em's seen three doughnut raids and decides to put a halt to this one. She needs oatmeal, not another doughnut. Em looks into the box, and there are only 5 left. She missed a whole bunch of happy discoveries. "Grandma, you've had a lot already. Don't eat that one. I'll fix you breakfast." Mom fixes her with a gimlet eye, opens her mouth wide and chomps down, delighted. Oh well, at least it's calories. At 85 (and 104 pounds) are we really going to get all tense about a sugar run? She was so tickled every time she "found" the box. We all saw her at one time or another, but no one noticed how many she'd eaten. Someone else mentions her delight with the Christmas cookies, in familiar tins. We figure she ate at least 15 of those. Mom, always careful about her diet, always worried about her weight. She must have had a wonderful morning, free of those worries.
We talk about her musicianship, how embarrassing it is that none of us really knew how good she was - she was mom, and mom played the organ, the piano, gave lessons, had a beautiful voice. Until I used her organ books I had no idea what a gifted musician she was.
We talked about being read to as children, and how that lead to a lifetime of reading, of studying, of learning. Do kids get that now? We talked about language. (Mom: Music Major, English minor. Dad: English Major, Philosophy Minor, post-grad theology and languages.) Dad was a word maniac, told us the origins of words. "From the Latin...." Mom was an editor, a grammarian. There was no loose syntax in our household, and nothing was turned in until she'd proofed it and we'd made the corrections. Pain in the ass then, but what a gift.
All that reading, all that writing and rewriting. All the "sermons" about Thomas Paine, Thomas Jefferson, the Leisure Class, The M-I-C, schools becoming training grounds for future cubicle dwellers, not places where education occurs. How come so many Christians don't seem to like what Christ taught? How can you call yourself pro-life and have such disdain for anti-war people? He'd have been a spectacular and beloved college professor, but wasn't so popular in small town parishes.
Epictetus, Thomas Merton, Dylan Thomas, Mark Twain, HG Wells, Ralph Waldo Emerson, Socrates, Shakespeare, Robert Frost, and James Joyce. Moving day was mostly hefting boxes of books and music, LPs and finally CD's.
Mom left us with 37 scrapbooks. Her life, dad's life, our life, JFK's assaination, and that of MLK and Bobby. 9/11. 2 of her 2 years in the WAVES. One for each year in the Choir, with all programs carefully protected, letters to and from home on choir trips. 2 of her father's political and editorial experiences. Each child has 2, minimum. I have 4, as the oldest. Locks of hair, report cards, spelling championships. Basically every document with my name on it.
We talk about which to take to the memorial service. People should see some of them. And the Barbie doll clothes she made. Do we still have her WAVE picture, and Dad's Navy picture? She was gorgeous, and he was casually handsome with those intense blue eyes.
We're calling the away brothers so they can say goodbye over the phone. Her eyelids twitch when she hears their voices, the first movement in 3 days.
At four I put the pulse ox monitor on her finger and can't get a reading. I panic for a minute, but can see she's still breathing. We can't feel a pulse anywhere, we know this is very close to the end, but no Cheyne-Stokes so we're still safe. My hand is glued to the top of her head, I want her to feel me loving her.
More chat, a quick dinner break in shifts. At 7:07 PM I realize she's not breathing, hasn't for a bit. We see what little color was left fade, that grayish pallor moves in, and we know she's gone. What now? Assign phone calls. I'll contact Hospice, they have to pronounce TOD. It will be a couple of hours, which annoys me. Then we wait more for the Cremation Society to come and get her? I'm tired. I want to leave. It ends up being 3 1/2 hours, and halfway through I'm grateful for the delay. How do you return to normal life with no transition time?
I still have my hand on her head, and it's still warm, although her hands, her feet, her cheeks are cold. I need to be here. Desultory planning for a service, when do the brothers arrive, does anyone remember where the e-mail addresses of her nieces and nephews are?
The nurse arrives, very apologetic. It's Friday, and staffing is limited because 2 people are out sick. She pronounces TOD at 10:33, then tells us she called the cremation people so we wouldn't have to be there another couple of hours. Thank you. "Some people want to stay as the body is removed. Some prefer to leave. Many who stay later tell me they wish they hadn't. It's your decision." We have a volunteer, my brother-in-law. We sit another half hour, and I suddenly realize mom has been present this whole time, but has now left. I say "She's gone." seconds before the man from Star of Texas appears at the door. We stand up and start to pile out. "I guess mom didn't want to be here for this part either." We laugh, and leave. Goodbyes, and drive safes, and text me when you get home. Do you want to come with us? No, the birds miss me, I have to tell them I'll be home more now, mom's gone.
I get home, my daughter talks to me until I drive through the gate. I need something to focus me. It's pitch dark, my landlords are out of town and I didn't leave a light on. Stumble to the door, too tired to talk to the birdies, I just wander upstairs, take off my bra, and fall into bed. Remember to text the "home safe". I have to get up and brush my teeth, wash my face. On the way to the bathroom I think "I'll never be able to touch my mom again." It's like a punch in the gut. I finally start to cry. Fuck the face and the teeth. I cry myself weak, fall asleep, and wake up abruptly 8 hours later (a record for me). I start to get ready to go to Martha's, realize there's no reason. What do I do when I don't sit vigil? I don't remember, nothing makes sense.
I drive to my sisters' house, and it takes the 3 of us two hours to decide what to eat. Eggs. Scrambled or fried? Or soft-boiled? No, soft-boiled in Norwegian egg cups is mom.
How can we plan a funeral?
People start to bring food. The word is out. Now I know why they deliver food to a house of mourning. People in grief can't figure food out, we can't find an appetite, but if it's there we'll eat so we can keep going.
We meet with the funeral planner at Cathy's church. (We're both Church Musicians, but my Catholic Church isn't a possibility). Sister Joan wants to sing the lullaby we sang for dad's funeral, the one they always sang last, in the car and at home. "Now The Day Is Over". We can do it if we practice a lot so we don't lose it. Cathy's going to sing "Brother Jame's Air" and "Jesu Joy". She has a spectacular voice. I'm playing the service. I need to do something I KNOW how to do, I have to play for mom, from her organ books. We choose hymns.
We'll use the little chapel, it won't look so empty. There's no out of town family who will come, we're sure, no friends who are still able to travel easily. I talk about our grandparents funerals, which I remember. I felt so left out. We involve the grandchildren in every aspect of the service. They read, they carry the ashes, they serve for communion. My daughter will handle the thank you from the family. There's no eulogy. Chris wants to read a poem, one he found that is equal to what dad would have written if mom had died first. We approve. It's them.
Memorial service day, we arrive an hour and a half early. I need to work the creaky organ for a while, we need to practice on site. A cousin is flying in, and we're so thrilled. Some of our friends will be there, and a few members of Cathy's choir.
We're up front, getting everything in order for the service when Cathy looks up and the chapel is full. Standing room full. I see people who had apologized for being unable to be there. They're all there, most of my choir, most of Carole's choir, many members of both churches, our AA and Al-Anon friends, people from the community who know us through volunteer activities, community chorus, even a couple of people from the theatre. I rush out to greet and hug and thank people. Bernadette hands me a card from Fr. Mark. He was planning to be there but had to handle an emergency. He's only been our priest for 2 months but he was going to be there. I'm moved beyond words. Mostly the priests haven't been all that interested. I'm not Catholic, I'm just a good liturgical musician. I can't quite understand why this one cares about me. (Now I know - he's a man of God in the best sense.)
The opening hymn is mind-blowing. All those singers! My son-in-law asks later what the heck was that about? He's never heard people sing at funerals. It sounded like a concert.
It did indeed. It sounded like the big family reunions, on both sides. We all sing, and table grace is generally in 4 or 6 part harmony. That's what I heard - the families singing in rich harmonies, a joyous send-off for a wonderful woman.
The grandchildren were admirable, the poem almost finished me off, the music was stunning. People stayed for 2 hours after the service, drinking coffee and iced tea, eating those silly sandwiches and lots of cookies. They looked at the pictures, the scrapbooks, the Barbie clothes. They listened to our stories, our pride in our mom.
My daughter and S-I-L disappeared a bit early, and we came home to a fabulous meal, catered by Whole Foods (Karl works for them), pasta salads and chicken breasts and salmon and fresh fruit and veggies. Some friends joined us, and we talked more. No one wanted the day to end. We felt uplifted by our friends, held in their loving hands.
The nurse sent a lovely card. "Thank you for the opportunity to work with your family. I've never had a patient die so sweetly or peacefully. Your mother's legacy lives through you, a legacy of love and family that is rare and precious."
Please let the same be said about me.
9:58 PM PT: I have to go to bed. I didn't expect this would publish tonight, and I have a wild day tomorrow I have to be ready for. I wish I knew how to put this on hold.
Thank you to everyone who reads this, and for the warm and welcoming comments...