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Hospice Notes
April 2006 - Born Again
Signed up for "Introduction to Sacred Art of Dying" workshop through Adult Catholic Ed this winter knowing only the title called absolutely. ("No way", said a couple of folks I mentioned the workshop to.) Lo, hundreds of folks filled a big room at St Marks parish. Maybe they knew who Richard Groves was--I didn't-- maybe they came for CEUs. Dunno. Do know, as soon as he spoke, I sat on the edge of my seat as my passion for dying and finishing well was revived by this former priest and chaplain who knows something like 9 languages, some ancient. Yes, yes, yes! I thought! How I've missed this message, this subject in my life. Groves has studied monk/nurse/hospice/midwife margin notes in ancient "hospice" texts!! Oh, how very good at this transitional time in life to hear straightforward talk about meaning in life, spiritual diagnosis, dying well. Sat spell bound, as cell phones went off all around me. The morning ended as we lined up for a with a Celtic "Ba Sona" oil blessing--May you have a happy death--with Groves and a catholic sister. Wow.
I was a new woman as I staggered onto afternoon rehearsal for Gene Harris Festival Gospel Sunday with Cherie Buckner, Randy Coryell and the Celebration Choir! Couldn't request Groves book, The American Way of Dying: lessons in healing spiritual pain, from the library fast enough. (The line to purchase at the workshop ran clear across the room!) Wow. Home.
June 2003 - Fierce LessonsAfter teaching me to teach, my beloved yoga master Carol's final classes shifted to living and dying. Her last two years I didn't actively have a teacher of asana (poses). but I sure had one heck of a teacher on Living your Yoga. As a hospice trainee/volunteer and obsessed spiritual seeker, I had visions of our roles switching--being able to help my yoga teacher die! Ha! Utter delusion! Don't think my visits, hospice training and experience, benefited Carol one iota, but I sure learned a helluvalot. Although I write this as a "hospice" experience, the amazing thing was that although Carol ultimately gave up her body, she didn't acknowledge death or received hospice care (possibly a few weeks), making the experience somewhat surreal. She had most of us convinced she was getting better until the moment she died! (At some point the subject must have come up, because family knew she didn't want a funeral.)
For two years, Carol rotated from home to emergency room to intensive care to care center to home, again and again. Because she often begged to live at home with her dogs and pig, for the life of me, I couldn't figure out why hospice wasn't called in to help her to stay at home, not to mention provide counseling that might help her and family with whatever she was going through. If not dying, what! Feistily I phoned and attempted to speak with doctors, social workers, nurses, even chaplains, but what I heard, again and again was--she's not dying.
Maybe that's what Carol said, but how could so many "professionals" believe it! It was like the emperor's clothes!! Just because she still sat straight like a yoga master and on days when she could walk, walked like the professional model she once was, didn't mean she was exempt from death, did it?
Several times I point blank asked Carol or family, "Why isn't hospice helping?" No reply, change of subject. "You could stay at home if you had help!", I pushed. Hospice teaches volunteers to help families and patients make peace, forgive. As far as I could tell--Hospice zero; C took the full drama with her. Hospice also teaches to let people be themselves, only offer. So be it.
If not dying, then what was the desperate struggle to breathe? The comas? Why was Carol on oxygen day and night, oodles of meds, her brain foggy, her veins too fine to find? Her weight dropping slowly below 100 lbs. For months and months and months I expected to learn she'd died. However, on days when she could speak, I heard, "I'm going to beat this." But of course, like all of us, she continued to die. And, like Custer's last stand, most of her support troops were lost or wounded in the process.
In the years I knew Carol I became more spiritually secure, made peace with religion. My mustard seed of faith (and delusion of assisting!) allowed me to continue to visit Carol, relatively unscathed. My spiritual practices--all of them--help me visit cranky elders and smile. I don't mind. I know the stink of enlightenment offends; I need forgiveness as much as the next. I don't mind just sitting silently. I enjoyed the challenge, wanted to learn, and hoped to bring to Carol and perhaps her family, moments of comfort and humor, when others couldn't face her frustration, withering body and struggling voice. Particularly on Sundays after church, I was patient enough to hunt Carol down (no small task--how often I heard "Not here", from hospital or care center) and visit.
Several times I was with Carol when a chaplain came by. "That's right, no religion", she stated firmly at the same time she begged for prayers! Carol seemed most pleased when friends brought psychics by to treat her.
In hospital and nursing homes, Carol was her own advocate. She kept a full staff of nurses, aids and doctors hopping. Visitors were employed fetching "fresh" ice--it soothed her spasming throat. A pile of Burger King sacks and wrappers sat at the bedside of this committed animal activist and vegetarian. Occasionally while I sat by or on her bed, one of Carol's sisters handed a fresh burger in the door on her way back to work. A lot of untouched food sat around Carol. "You've got to help me eat this", she'd point to her lunch or dinner tray. While hefty me might pick at her double ("patient needs to gain weight") portions of food, she rarely did. She continued to disappear. A thousand times she rang to demand spasm medication; a thousand times she cursed doctors, nurses and family for taking medications from her during hospital stays. (During her stays back home, where I'd never seen anything like her collection of medicines and make up, eventually she was found unconscious.) She cursed staff who didn't always answer her light immediately. I looked around and saw only angels, flying up and down the hall, in and out of rooms. From young, young kids to saintly elders, haloes all but visible--What a job!. I met numerous roommates. I was particularly fond of one--she had steady visitors, a wonderful way about her. Sometimes I wanted to visit her!
I didn't mind sitting silent but Carol did! There was probably only one day when I felt "useful". Carol struggled to apologize profusely because she felt awful and couldn't talk. She never did understand that I didn't come to talk, but just to be with her, because I loved her. That day she even let me rest a hand on her knee, foot or arm. When I realized much of her bed was wet--probably she'd dumped ice while struggling to get it out of the mug to chew on--I asked for dry linens. An aide in gloves and I stripped the bed.
Many visits to the nursing home, Carol would be found walking the halls with her portable oxygen unit, standing tall, neck long, head lifted. You could spot her a mile away in the halls, the only person with regal posture! She never lost that unforgettable posture, even as her lungs filled and her heart struggled. She never slumped. Covered with bruises, see through skin, bones poking out, still she stood erect.
"Where have you been," Carol always queried, then turned away when I said church. ("All Jeannie ever does is go to church", she complained to another visiting student. She's right.) C sought knowledge in books--claiming she'd read every book in the library--enough to reach to Denver, she'd say. At some point in my life I realized I was only interested in peace of mind ("Then that's all you'll ever get," snapped one "psychic"). I wanted to tell C, the service that morning had been awesome; I watched the downs syndrome man look around... he has the best posture of anyone in the whole place, you know. I'm growing to love these people. I've never heard a pastor speak so highly of his wife. It's really good for my soul. But I knew I didn't have a listener once I said church.
I was fascinated by C's unacknowledged dying! She was disappearing before my very eyes, slipping away mentally and physically. "You're vanishing, you know", I'd say, observing jutting bones and bruises, looking like death warmed over. "I'm going to gain that weight back", C retorted. Knowing how psychic she was, I asked if she was in touch with friends and family who'd died. I tried, "Where'd you go during that coma last week?" She shrugged. End of subject. I hinted bluntly about her not pulling through. "You might not be here to write that How to Use Your Body book", I'd say. She'd nod; "You may have to do it", she once said. But that was about as close as I could get to my favorite subject, death! Carol clung to her oxygen deprived mind to the end, asking questions and demanding facts and answers. Yet she spent more and more time "elsewhere", looking beyond, eyes seeing beyond us. They never had seen what I saw, as long as I'd known her. She grew further and further away. No one seemed to notice but me!
From one of her umpteenth death beds beside which I'd set a yellow pansy (this nursing home was one of the truly dreary ones society calls scandalous), she demanded, "Tell me about Your Mother". Since we met, Carol's "How's your mother" seemed a favorite subject. I took it personally, figuring she knew mom was one of my hot buttons, derailing my mind from present thoughts, dragging it hundreds of miles away to mom in a locked memory unit. C knew how to push buttons--I'd watched. My mind jerked away from yoga questions and conversation I'd hoped to share. Anything I said was dismissed with "How's Your Mom!" Obediently I'd mumbled something like, "Dunno; she can't talk; she's in Minnesota. Don't think she's very happy." Finally I realized C had a kind of subtle psychic hotline with struggling moms-- because she was one. Although she pitied me for not having a loving family like hers, as years rolled on, I realized my experience was a cake walk. Sometimes when I was with C, I remembered unsolicited advice is always for the speaker. When C's daughter came to town a few weeks before her death, but only spent a few hours visiting her, I finally "got it".
As long as I knew her, C asked after others. She was obsessed with kindness, especially to animals, and with learning. What a seeker and reader! We students learned about her animals and grand kids, but were slow to learn about C herself. C and I began talking more frankly as her immediate family relationships, along with her health, strained and cracked. C seemed interested that I was able to live miles away from my imperfect family. She had a host of local family. Looking into her crystal ball she saw "A stone house where I can have my animals and teach yoga". I offered my yoga space for her to teach, doubting she'd ever be able to use it.
I was uncomfortable playing the Everything's Ok Game. Clearly it was not. Watched uneasily as things of the world deteriorated for Carol. On so many levels she was a "perfectionist". When her perfect body began to deteriorate, she raged at loss of control. She wore make up to the end. Eventually the orange birds nest perched on her head with hair pins became too much for doctors and nurses to deal with. (I was there when a team of Mormons (perhaps) wrestled with her hair piece to lay hands on top of her head and pray over her! You wudda had to be there. Eventually I learned Idaho born and raised Carol was raised Mormon.) She switched to a dramatic wig of long red curls and seemed to enjoy being called Mae West! I'd have been embarrassed, if I thought it was important. Towards the end, several of us saw her own fine, thin hair. Who cared? I thought again and again. Who cared, of course, was Carol. After years of once making a living from her body, she was not about to be seen looking "less" than she once had.
I always keep a well used bandana in a pocket or waist band, ready for drips and sneezes. Once early in our friendship, Carol pointed to my pockets and revealed, "I've never worn pockets". Later I learned of her life long struggle with anorexia, obsession with weight and beauty. While I just pulled the waistline of flowered pants below my hanging belly to breathe better, Carol never had a belly to hang over her classic yoga wear. Took me years to adjust to studying with a teacher who was incomparably concerned about appearance. Who cared if she looked like a million dollars? Who cared if her voice was erratic? We loved her as is!
Her "curse" was to have this free spirited, tell it like it is woman--who was lucky to brush her unkempt, undyed, home cut hair once a day, whose pockets bulged with bandanas, rubber bands, favorite pebbles or sea shells--as a hungry student. Hungry for the particular body-mind wisdom and support she offered. We were quite a dance of opposites.
Her animals were Everything--as in love me, love my animals. Fortunately most of her students felt likewise. However, this student preferred her animals wild, as in deer and bobcat. There was an ongoing tension between us--my master keeping a small herd of size extra large, rescued dogs. I admired pictures of Carol's biological children and grandchildren, but I couldn't work up enthusiasm for her furbearers, as I called them. (I won't even mention the pigs.) I refused her plea to cut dog toe nails (feeling I'd done my part holding the ferret for nail clipping earlier). "I want my "children" to be taken care of", was as close as C got to expressing a dying wish; she said it again and again, seemingly her only concern. After her death Diane mounted a massive search for homes for Bella, Dora, Zoee....
Each care center stay Carol recovered some of her strength, enough to return to her home. I tried to leave visits to her home to animal lovers which is not me. Piles of dogs and fur surrounded and defended her, as she lay on the couch by the tv. Dogs barked relentlessly, pushing open doors, clawing and ripping my clothes and stuffing noses into my crotch. I couldn't stand it. The pig at least stayed in its room. At home I stripped. (Give me Dee and her smelly couch any day, I reminisced!)
Some time back, on a visit to her home, Carol asked me set mouse traps. She was so shaky, of course she couldn't set traps. Another time I held my breath and entered the mouse inhabited pantry to find dog food. By the time she died, mice as well as dogs, had the run of the place. I dreaded visiting. (Cats were an exception to Carol's fondness for animals.) Carol begged those of us who dared visit to spend nights. Sleep with dogs and mice? Not for no one; I wrestled with my conscience. Where were family--sibs, children and grand kids? The beloved daughter and sons she was so proud of? Only the tip of the ice berg showed.
During Carol's last few months I attempted to reconnect with other students for moral support. I learned I wasn't the only one having a difficult time, which helped. Diane and I co-visited; John visited Saturdays.
If Carol wouldn't learn about death, I would! I read the Dalai Lama's new book on death and dying. It recommended keeping negative distractions of the world away from a dying person--like tvs. The last time Diane and I went to visit Char she was on a breathing apparatus with a technician working with her. I slid between the window and the bed and sat on the sill, close to Carol's head. I nodded at Diane to turn off the tv. From her death bed Char all but shot up. Diane turned it back on. Carol was still agitated. On, off. Then she indicated the outside light wasn't comfortable. Diane moved the shades one way, then the other. Carol was clearly displeased. Carol, Diane and I all gave up. I believe that was the last time we saw her.
The next time I stopped by, Carol was back in the hospital. Later we learned she returned again to Life Care where she died just a few minutes before sister Betty visited. Betty told me later she sat with Carol's body and talked to her. I like to think some of that final peace making I'd rooted for so many months took place as Carol's spirit lingered.
The following week, a few of us students and Carol's daughter held a circle and swapped stories. Then the winds of change blew out our candles and scattered us. I was strangely reassured to realize learning the fierce lessons of love are not unique to my family.
Two years in and out of hospital seemed like a frightful way to go, but of course it's not mine to judge. Just because I couldn't see the perfection doesn't mean it wasn't perfect in it's way. I asked for the experience--no one but me made me see my teacher to the end. Thanks for the fierce lessons, Carol. Bon Voyage! I will never ever doubt that truth and love are the path to freedom.
February 2003 - No time sheetsAlthough I phone Lori call now and then in the evening, she and son still sleep all day, play all night, making daytime visits not so easy. They and their growing ferret family are doing fine. Lori makes yarn wall hangings; Rick talks on the phone. I don't miss their smokey trailer; but I miss them.
My dear teacher Carol has rotated from home to emergency room to assisted living to home, again and again and again! Over and over, she goes from near death to working out!.
February 2002 - Everyday CirclesLast fall Lori improved so much, I'm no longer an official volunteer! The family was showered with volunteers, goods and services, including a lovely working car, new microwave, yard work and groceries. "We could use a steak", the son said from time to time; "So could I", I laughed. I drive a high mileage second hand car, my second hand 1983 microwave still works. I began getting uncomfortable.
We talk by phone; I've stopped by to visit; haven't found anyone home, or awake. Patient recovered!!
Instead of accepting another volunteer--the need is great I was assured--felt I'd rather pay more attention to who's around me, rather than adding something that would cause more driving in traffic.
Hospice opportunities abound! One afternoon while shopping for a front yard tree I met a widow shopping for a statue for her husband grave, until she arranges for a stone. She was afraid she couldn't carry the size she wanted. I offered to carry whatever she decided upon. On a cold afternoon, we stood at his grave site at Dry Creek cemetery. For an hour I listened, growing colder and colder; finally I had to go to the bathroom so desperately, I practically dashed off mid sentence! Like Jack Kerouac, it was all one long sentence! Goodness!
My neighbor, who's close to 90, hasn't made it across the street for tea yet. She assures me she can. Once I realized how strong her will was, I knew it was true. When I offered to take her to church with me--she said her family won't--she snapped "I only go to the church of God". Oh, I said, wiser.
Christmas Eve I met my email pal and her husband for early church service in Portland. Forgetting that she'd been going to Seattle more and more frequently to see her father in the hospital, we silently hugged during Silent Night. Later we learned we'd both forgot the cookies we'd brought for each other. Drove north and car camped on a levee under the full moon. Sunrise was equally awesome, Christmas morning fishermen already unloading nearby.
New Year's day Arlene wrote that her dad died 2 days later. She sent a beautiful, touching biography of who he was, a poem he'd written, and a Dec 24th photo how him in the hospital bed with smile, santa hat and scarf! Whow! Knowing how extremely close they were, how close her whole large family is, I was unclear how to respond. Her family reunion photo looks more like my class reunion! Who am I, then, in her life, I wondered? My family experience is estranged, my experience quite different!
I'm always an advocate for death, especially when folks are chronically in and out of nursing homes and hospitals. I believe parents heroically stay alive for children, sometimes even in spite of children. Something one knows, not says, to a grieving family.
Since I don't have great e.s.p., I responded briefly--my practice is to acknowledge, however brief. I must have mentioned my visit over the holidays to see my dear friend Barb's house in Bellingham for the last time. I'd seen her famous yellow 1971 VW and kitchen of hundreds of cups of tea and many gourmet dinners, one last time. I'd taken a few everyday momentos her trustees offered (which now bring a smile when I see them in my home).
Trust the process. "Tell me about Barb", was A's reply. No one else in my life had said that. Unable to attend the out of state memorial--I'd scanned and emailed favorite photos-- I've been carrying the loss of a mentor of 25 years on long walks and in my writing. At last I was able to share with another heart how important Barb was and always will be to me. In that "indirect" way we both shared and heard.
After a silent space, I asked to learn anything she'd like to tell about her father's death. To my surprise I received the honor of hearing about the last night with her father--they were alone when he died. Whow! When you have a big family, a lot of people die. Arlene keeps my prayer list going.
A few weeks later a woman I haven't talked closely with for many months phoned--time to listen. After catching up, C ended up telling me how her mom died a few years ago. Her sister was out of the room--she was alone with her mom. She was stunned that within 5 minutes of telling her mom it was ok to go on, she'd died. Whow. I'd heard the story before. I never tire of it.
Last week I stopped at a favorite nursery. Not exactly closed for winter, not exactly open, the owner ambled out. We walked through the green houses where it turns out the cat, 13, and dog, 17, live. (Could have ages reversed). "We thought the dog was a goner when he had a stroke this winter", T explained, "Got all stiff. Most recently he seems to have forgot how to bark." As a stranger I was enjoying this sensible conservation of energy. Ever curious about dealing with old age, I asked if they'd taken the dog to a vet. "No, no, the wife gave him halves of baby aspirin. He's ok now." Indeed he was. After reading about a cat who got stuck in a garbage disposal going for smoked salmon skin, that resulted in police, plumber and vet, I was interested to note no heroic measures were involved in this rescue, albeit of a different nature.
This fall-winter via email my brothers and I have erratically discussed whether our mom in an Alzheimer's unit in MN could take a move to Idaho, where I have a bit more time (and to my way of thinking, more perspective on dying). S-l-o-w-l-y I'm visiting Alzheimer's units and networking with social workers and nurses about dimentia. Interesting. When mom stopped eating years ago, I knew she'd lost her will to live. For years I've felt willing to let mom go, out of her misery--she's not the mother I knew. Don't sense my brothers are ready. One brother wants to feed her, another wants to take her on walks, another wants... They notice her moments of happiness while her unhappiness screams at me. Each of us has our view, real and different. I practice trusting the process to work this out.
A friend in Seattle who for years has been on a team of caretakers for an older man, frequently shares stories. "Mr D, used another one of his 9 lives", she was telling me recently, "He's amazing". He can no longer stand, after the last stroke. One night when he cried out he wanted to die, Mary asked how she could help. "Hold my hand", he told her. His life force dwindles, but not his humor. Recently she was saying how sweet he is, when he snapped, "Tie the bull outside, will ya". They're enormously fond of each other. I'm honored to have met this man of many stories. I beg her to take notes.
I've just started reading Studs Terkel's Will the Circle Be Unbroken?: reflections on death, rebirth and hunger for a faith. Studs is 88. The introduction is rich.
My yoga teacher is ill. She has a large, close family. What is my role? I look forward to learning how we each fit into the Circle.
July 2001 - ferret fingers and storage unitsLori's breathing has improved so much smoke doesn't bother her anymore! She has a cigarette now and then, she says with an impish smile! More visits than not, she looks most well. Smaller than ever, however, she worries the nurse. Every once in a while Lori apologizes--"I'm having a bad day" and takes to her bed. Mother and son have nearly perfected the art of pain management.
One afternoon we three sat the small kitchen table. I munched milk duds steadily as they Rick drank root beer and Lori had an occasional sip of coffee. Wizard that R is, when the subject of the ferrets (who I mercifully haven't seen for many months now, though I hear the shaking of their collars from the ferret room) arose. Must have said the wrong thing; in a blink of an eye, I was holding the non biter while R skillfully clipped her finger and toe nails. I couldn't believe I was aiding and abetting this habit of which I disapprove (pets/ferrets). Ach. "I'll get Precious (the biter)", R said. "No way!" I jumped up, hastily telling Lori good-bye. For some reason I like to kiss her on each cheek.
That memory was eclipsed by the storage unit adventure this week. Having had 2 (storage u's) of my own to deal with at the peak of last spring, I was less than warm on the subject. Ever since we met, Lori has wistfully described the beautiful china cabinet that was moved up from CA and has remained in storage. If her dying wish was to have it with her, well... Still, I hoped against hope I wouldn't be involved in its retrieval. After months of silence on the subject I naively decided the subject, like the presence of the ferrets, was moot.
Again I was wrong. Last week with uncharacteristic promptness, son met me at the door and straight way awoke mom. I shudda be suspicious when Lori appeared quickly, dressed in matching shorts and top (as usual). "We'd like to go to the storage unit", R announced. "You wouldn't drive your mother in an old truck would you?", R set me up. This time I was no fool. "Absolutely, I would", I fired back defensively. "She rode in the VW Beatles; she rides in whatever I drive." Mom has always been a good sport about my various notorious homes on wheels. She's a camper at heart.
It unfolded that somehow R's truck started after sitting for months. "Terrific", I said. "I'll take Lori; we'll drive both our rigs so if we can move the china cabinet, we can lay it in the truck." R glared at me. A martial arts practitioner, he impatiently extended a chi filled arm with curled fingers towards me, gesturing for me to pull against his hand. "That's all the strength you'll need", he said, supplying oppositional weight. "You can do it". My aching gardening back twinged. Only then was the true location of the "nearby" storage units on the far, far side of the next town revealed. "Let's go for it; I have time today", I said. "I'd better brush my hair", L said.
Can you guess? When I finally caught up with R at the storage fence out in desolate county wasteland, the truck wouldn't restart. I gestured at my bumper; R climbed on (the station wagon is 2 person at best. It's an exceedingly hot summer afternoon, by the way. R pointed the way as we drove through a field of junked cars, down into what reminded me of an underground bunker. R unlocked the unit, left Lori and I to dig through it, hoofed back to the truck. There was the china cabinet, as lovely as I'd been told, not gigantic, just the weight R had indicated. When R didn't reappear, I left the hospice patient in the bunker and went back to jump the truck, again and again!
I'm nervous about clamping on jumper cables. Sharp as a fox R wanted me to do the clamping! For a moment I had visions of my battery exploding due to some jerry rigging in the truck. No, it's your truck, I said firmly. After several attempts--didn't sound like battery to me-- the truck restarted. Seated at the wheel, R then had me go-fering--the cigarettes that were dropped, the chocks--while he kept his foot on the brake. "No emergency break, you'll have to put bricks under the wheels", he purred at his volunteer. "Let the truck roll", I retorted. (I rarely set the brake; it's a game I play.) On this hot day, even hotter sparks flew in this subtle war of wills. "Why park on the slope?" I hissed. "You wouldn't need chocks if you parked here". As our egos parried I forgot R holds a concealed weapon permit. Later I was reminded of Garrison Keillor joke that English majors glory in the fodder that comes from the stories of their lives. English, anthropology, whatever, I couldn't wait to get to the keyboard to embarrass myself.
Amazingly, R and I were able to coordinate resting the cabinet on its back on a bed of foam in the truck. We covered with the lovely round glass doors with sleeping bags, packed up shelves and boxes marked porcelain. All this time, the truck idled and Lori stood patiently.
A good 7 months after I first heard about it, the china cabinet is home, glass whole! Never thought I'd see it! R and I survived each other. I learned and hopefully grew. Mother Teresa I am not; boundaries, intuition and humor are my strengths. It's good to meet one's match. R's equanimity, patience and determination astound me. He's absolutely right: everything gets done in it's own time, whether it's bringing home the china cabinet, or trimming ferret "fingers".
Attached as I've been to the china cabinet project, I hoped Lori would be pleased with it's arrival. She was hungrily eating cherries in the kitchen, one of the first times I'd ever known her to eat, this minute, disappearing woman. Living day by day, Lori and Rick have few expectations; are rarely disappointed. All longings, all attachments, These too shall pass. Always the finest teachers.
May 2001 - Who naps!
I've been pooped (or as I first typed, "popped") from moving for months now! Every few days, I fill the station wagon from my storage unit, plugging away in my tortoise like way. With the car loaded, I usually stop by Rick and Lori's, who have also moved from the "restrictive" apartment to a trailer closer to my classes. By the time I get there, after yoga, a dance workout, then storage, I'm rather done in. Lately the tv (all 60 some dollars worth of ultra cable services each month) has been off! One afternoon Rick went in his room to nap--mom and son are in the habit of staying up all night--and Lori and I "went shopping" via spring catalog flyer. There are only 2 chairs: Rick's and Lori's. I prefer the small old stool from the kitchen anyhow, so like the one from my paternal grandparents.
An all-American gal, with charming taste in clothing and jewelry, Lori frequently mentions how much she misses her southern California pastime, shopping. With total absorption as I'd never seen before, Lori studied each page of the sale flyer, admiring the strong spring pastel colors and each style, commenting on price. “Uh, terrific pink (blue, yellow)”, I'd agreed. "Which outfit do you like best?" we asked of each other. Not being much of a main stream shopper, page after page, my eyelids grow heavier and heavier. “Hmm, nice shoes, pants suit, blouse..” Shopko had never been more excruciating for me! Yet I loved the intimate time! Miraculously L could suddenly hear and see perfectly! Her attention was rapt, like mine might be at a thrift shop, or bird watching. What a moment!
Still the weight of holding up my end of the shopping excursion became too much. “Lori, I need to nap a few minutes, ok?”, I said, literally sliding off the stool onto the floor. I lay on my back beside her recliner, on the cat scented carpet. L'eau de chat (have I got that phrase right?) had never been sweeter. At the cinderella sized slippered feet of this darling blue eyed elf, I drifted into blissful sleep immediately. Is there anyone else's home in which such outrageous social behavior would be ok? Neurotic snoozer in my own bed, the peace of this woman allowed me to sleep comfortably in the uncustomary position.
I awoke refreshed, relieved to find Lori on the last page of the catalog. Thank you, thank you for the respite, Lori. Volunteer naps, not patient! I was reminded of an earlier afternoon when I sat on the floor painting my toe nails with L's glitter nail polish, while she napped in her bed. "Here", she'd said, with that irresistible smile, handing me her new dollar store treasure!
When Lori doesn't feel well, she apologizes profusely for needing to lay down. When I arrive and she's still in flannel nightgown and robe, more apologizes to this outrageously attired visitor. Usually she wears matching sweatshirts and pants decorated with buttons and lace, that she designed. By contrast, I arrive in informal semi yoga/packing outfits, favorite loose plaid pants and well used, startling T-shirts, often severely mis-matched. We make an odd couple, the proper lady in coordinated sweat suits who soaks each coffee stain in clorox and the free spirit, who wouldn't be caught dead in a pink pantsuit and has never owned a washing machine!
A few weeks ago, L had her hair permed by a mobile beauty operator. Now L looks even more proper. '60s holdover that I am, I approved of her former natural look. But it's not her clothes or hair I'll remember longest-- it's her extraordinary smile. With breathing stronger than ever, L's pain is now mainly from arthritis/deterioration in bone. Of course it hurts, there are nerves in the bones, I tell her, still recalling the pain of once having a screw hold my elbow together. She complains rarely. When she does, it's mainly that she's not doing anything, just sleeping (side effect of pain medication). Bless her! Recently in the midst of a bout of pain I asked if she dreams! Suddenly her whole face lit up as she replied, "Oh, yes! I have wonderul, wonderful dreams! I'm with my friends long ago, yet I have no age."
Of course she does.
Each path so different, so divine.
March 2001 - Wish me luck!
I was still teary eyed last fall when social worker Claudia purred in the phone, "There's a darling woman we all love. Would you be interested in visiting someone again?" I was surprised how fast "Of course" flew out my mouth. Perhaps it was the mention of sparkling eyes that lured me out, the week after Dee died.
A few days later I was looking for the basement apartment of Lori and her son. When I saw the eyes and smile, I knew I was at the right place. No kidding. A tiny woman wearing a large jeweled cross, sitting like a Buddha--oops! devout Catholic--radiating peace, amid piles of half packed boxes, watching Judge Judy. After basic hellos with mom and son, I tried to make myself useful packing glassware. Just a few blocks from my home, they were packing for new digs, uncertain just where! The following week I called the [hospice] office and set out in search of home #2.
Among boxes and a working television, again I found mother and son. What a pleasure to be with someone wanting to talk openly about death--L, that is, not her son! She's unabashedly grateful for having borrowed so many years since life threatening brain surgery early in her life. Decades later, having lived a full life, she is slowed by breathing difficulties and deteriorating bones. "I only hope dying isn't painful," she announces; "They say I'll probably just go to sleep." What faith!!
I floated home, again and again, sometimes with a bowl of beef stew. Clearly yours truly gets the most out of this deal: hugs, kisses, and sometimes dinner! She's a woman who can be out given. I have no trouble seeing her supporting 3 children as a beautician/esthetician. She's irresistible. Even when it comes to wearing an awkward, electronic pain control device, L's attitude shines, "It's a miracle!" she says with sparkling blue eyes, referring to how well the device works. Of the women who bring her communion, she exclaims, "They're so nice," she says; "Everyone is". In a world full of suspicion, meet Lori!
As weeks have passed, to my surprise (and her physicians'), her breathing improved, no longer requiring constant oxygen! Bones, though, continued to deteriorate, sometimes painfully.
One winter afternoon we discussed the possibility of going to Walmart after her next social security check arrives. I use the word "discuss" loosely. Like several of my older friends, L does not hear well, although, with unusual candor she adds: "I don't want to". As a hospice volunteer, I know planning is just as real, as doing. Some weeks "conversation" is mainly a matter of listening. One afternoon I sat "patiently" in the kitchen while L tried to look up eye glass repairs in the yellow pages. Not under G for Glasses, nor E for Eyes; I have empathy for the "older" generation. I resisted the temptation to grab the directory and look myself, reminding myself I'm companion, not fixer. People want company, not solutions. (But I did bring a glasses screw and screwdriver the next week.)
Another visit the tv was noticeable turned down; L had a new hearing aid! PTL! In a rare turn of events, I was the one peaking at the tv. Couldn't help recognizing footage from my old stomping ground, downtown Seattle, where I worked several years. If I hadn't seen the family's tv, who knows when I would have learned about the earthquake that very noon. The southern Californians couldn't have been less interested.
My job is to be present, yet unattached. L's yearning to have her china cabinet from storage with her tugs at me. I watch the family dance with fascination and, I hope, compassion. At times I'm challenged, other times, awed by the perfection of the dance. Who am I to say what works for others! "We grew up together", L has explained, "I was recovering from brain surgery when Rick was a toddler". I offer to help L cook--she can barely a lift skillet. I'm out of order, "Rick helps me". I bring my favorite meat loaf; it's not popular. Best leave cooking to son and girlfriend's family!
Every week there are surprises. One paycheck, a ferret joins mom and son in their rental unit. Everyone seems to perk up, but me. Another paycheck, a younger ferret, more family cheer, more incredulity on my part. Luckily I can't guess what's next! I noticed a small hole in the entry way as I walk towards the door: "It was an accident; Rick's sleeping", L said glumly. "He was up all night talking to the police. The bullet hit the neighbor's bedroom. They have a baby." I shuddered. On my way out, I noticed the Baby on Board sign near the second hole. Honest. The following week, mother and son were back in high spirits as they reported they "want" to move. Apartment siding had been replaced, neighbors moved, no more Baby on Board sign. "We don't want to live where we're told what to do," L stated. After months I realize those irresistible southern California eyes and smiles that found their way to the Idaho frontier are lit by mischief!
Wish me luck!
November 2000 - Wednesdays with DeeLast Wednesday an unusual light drew me out from under the quilts (nights in my nest are a lot like camping—like ‘em cool). Lo, an extraordinary orange sunrise was in progress! Remarkable for this time of year! After a trip to the bathroom, I snuggled back down, awed, lying over pillows for some yoga chest opening, anchoring my lower back for a few more winks of therapeutic snoozing. Shortly the phone rang and social worker extraordinaire, Claudia, told me “my” dear hospice woman, Dee, died suddenly. I’d known something was up, since the week before when I found her anxious, with her husband home from work and an old friend by her side. Ahhh. As it happened, I’d been greatly looking forward to seeing her in just a few hours!
As I lay back down to ponder this magnificent event. Almost instantly I knew the sunrise had been Dee’s celebration. Way to go, Dee! Good job! You did it! Congratulations on letting go of years of pain. As an advocate for death, I was delighted! As a human, I’ll miss her.
Last June, as a hospice volunteer, I began visiting Dee Wednesday afternoons, until her husband came home from work. By the time I met her, Dee had already survived multitudes of operations and health challenges, yet her health remained relatively stable. Then suddenly, Dee’s beloved niece and caretaker needed to be out of town with her own ailing mother, and the necessity of bringing in hired help was discussed. Dee would have none of it. Her anxiety attacks became more frequently, calling Ray home from work. Later Ray told me Dee slipped away the night before the orange sunrise, while they watched tv together. “We always said our good byes”, he assured me.
In my mind I have a picture from a few weeks past, of Dee and Ray sitting on the smelly old couch together, where Dee spent her last months. I watched with great fondness as they snuggled together like kids when Ray came in from work. Knowing a good picture when I see one, much as I wanted to, there was no way I could bring myself to whip out my iffy camera I usually carry. It was one thing to pursue Susie the cat around [see below] to get a picture of her. Instead, I held my hands in a frame before me, and clicked, saving the beautiful moment forever.
Dee’s passing was sudden. Her timing, her way. No one any stranger than myself (strange enough!) ever stayed with her. I’m honored.
Wednesdays with Dee are over. The gift of being with her and her husband of 48 years has no adequate words. I tried to tell Ray at the funeral home how much it meant to me to be with him and Dee. I was cheerful until I tried to speak. Heard the exact words in my mind, but only sobs came out. I waved and left.
I’ll tell Ray later when I stop by to visit him and Susie.
I’m new to this hospice thing. Perhaps I’ll have more poise in the future. Perhaps not. Somebody needs to cry! (Perhaps not the hospice volunteer? Oh, the blessing of being nonprofessional!) It was my pleasure to know the family. My pleasure to both laugh and cry with them.
Here’s to Dee! Good job, Dee, opening this heart o’ mine!May all beings know Peace
October 2000 - Family Lessons
In September I drove to Minneapolis to see for myself how my mom was doing. Years ago she stopped writing. Nor can she truly hold a conversation. Threads of communication are frayed. The more I'm involved with hospice, the more I imperative I felt it was to check things out from the point of view of a daughter involved in hospice.
Didn't take too long, in speaking with the brother living near mom, to learn he hadn't time, energy or, I sensed, emotional strength for writing a directive for appropriate medical care for mom. Although I'd never written a directive, I knew I had a mission: assist my family to talk about the issues of our last parent's wishes.
One evening, shortly after I arrived, after looking through Minnesota suggestions for directives, I pulled out the laptop and awkwardly started a new page, Mom - Directive. To the best of our collective knowledge, it would represent mom's desires foremost, plus the feelings of her four children. Quickly I realized that while I knew what I personally believed about medical intervention, and I thought I knew what mom believed, what my brothers believed was unknown. Therefore, this would be a document with space for 4 responses after each topic.
I began by writing a paragraph describing mom, a brief bio; her independent nature, rare use of physicians, love of nature, etc. with space for each of us to add on.
I also realized that all my talk about being able to talk straight forward about death flew out the window when it came to talking directly to my own mother. "Yo, mom, what do you think about donating your organs?" Uh uh, just couldn't point blank ask mom those questions any more than my brothers could. They knew they couldn't. I wanted to, but realize I probably wouldn't.
It turned out the only way I could talk about death and dying to mom was indirectly, mentioning my friends' stories of their aging parents. Since mom paces like a caged animal behind the locked doors of a Memory Unit for Alzheimer's like patients, talking to her is like chasing after a 2 year old on the run. She does not sit. She is confused, her voice weak. Her mind drifts from channel to channel, the main one being her childhood, another old one is birdwatching. Often she is back with sisters and uncles long, long dead. Her faint voice utters fragments, clear to her, often undecipherable to the rest of us; occasionally totally lucid to those listening carefully. Early in this visit she clearly told me, "I am bitter". Then in her loudest, weak voice, in case I hadn't heard (I most certainly had) she spelled out "b-i-t-t-e-r". I nodded. She knows. Then zoom, off her mind went, back to the past.
One cold afternoon I bundled mom up as much as I could (she takes clothes off as fast as you put them on!). Thought I'd try finding a park to walk in and look at fall leaves. I was a little uneasy-- I was on my own in a strange city with a dynamic mother. The day before mom had asked to use a toilet every five minutes. Her aides and I discussed that it was probably because she was extra nervous with family. I'd observed that she seemed to follow well when one of my brother's led an outing, but I was not sure what would happen when her nontraditional daughter tried to take charge.
I opened the rider's door for mom to get in my notoriously cluttered--I call homey-- stationwagon. Mom and I both like clutter; it holds her interest. Pine cones, feathers, all kinds of treasures decorate the dash. I'd forgot I also keep my hospice badge hanging from a sign on the glove compartment that says "Relax, God's in Charge". Oops. Suddenly mom sat face to face with what I sense are her two biggest fears: Death and God. (How else could I have made the drive if I didn't have "help"!)
Immediately mom pointed to my hospice badge--she was nose to nose with it--giving me the opportunity to wax eloquent about my experience with hospice and the woman I currently visit, Dee. At some point I rambled on about a Boise friend who had just showed me photos of the Mormon funeral for her mom. I wanted to say, although my friend is extremely sad, she believes her mom is in a better place now. Her mom had Alzheimer's for years. "Too bad", mom mumbled, seemingly about my friend's mom dying. But before I could continue, mom switched to the birdwatching channel, "See that bird?"
I was at a loss how to "segue way" to funerals and ventilators, etc. Just couldn't bring myself to say "Mom, the brothers and I are writing up guidelines about your medical care to be left with your doctors; we'd like your input ." No could do. Instead we looked at robins and called them whatever we wanted.
Next, shifted to Mission Love. Sitting in the car together might be as close as mom and I would get. I bumbled onward, determined to miss no opportunity to say what needs to be said, "Mom, I came a long ways because I want to be sure to tell you again, to say, I love you." "That's nice," she whispered, "Look at that crow!", she looked off in the distance.
"Right, mom". Tried to imagine what she was seeing, a scene from the past perhaps. I know mom hears everything, even though she doesn't respond directly.
As I drove slowly back on unfamiliar highways from our brief fall walk--predictably mom was cold-- a cadillac hung on my bumper impatiently. Out of the corner of my eye I watched the drip on mom's nose, while she rolled up the napkins, towels and tissues I handed her. She put them in the sack on the floor. Her nose dripped on. It was a sweet moment of compassion for all beings, those in a hurry, those unable to! All those with dripping noses!
Decades of anger are bottled up in mom's exhausted body. When that anger flashes out at one of her fellow home mates, I decided to just to sing, "All You need is Love". Finally I know Love is the answer, no matter the question. "All we need is Love, Mom; all we need is Love. All we need is love, love, love; all we need is love." Thanks, Beatles.
My brothers have all seen the directive. I haven't seen the final draft, I may never. The process of drawing it up strengthen our common thread. As one brother put it "Despite our differences, we all want the best for mother." We sibs learned a bit more about each other, as I listed some of the tough issues around right living and dying. Mom would like that. She worked hard to keep her 4 "only children" together, as she once referred to us. She's the strong thread.
September 2000 - Of Cats and TV's
Last week I finally met "Susie", my hospice family's cat. More properly, I met the cat, whose family I visit. A milepost, I drove home smiling. I've been sitting with Dee weekly for a couple of months now, all the while awaiting approval from the most discriminating resident, the furry light of Dee's life, whose food dishes sit on the coffee table. It happened just as I thought it would: suddenly a cat would materialize out of nowhere. While Dee went into the bathroom out of the corner of my eye I noticed a shadow in the hall, eyes on me. Luckily I speak feline. When Dee returned I shared the news, and later, when her husband came in from work, I started to wave what felt like a fly off my leg, when I realized it was the brush of a whisker. Susie reappeared as though she hadn't been hiding all those months, withholding approval as long as possible. I imagined her smirking. Ha.
Susie Sept 2000New to hospice, I'm enjoying having a companion able to talk. (In reference to the 2 legged, not furry.) I'd say the one with 10 toes, but Dee's under count, losing 'em!) My first hospice call was to sub at the side of a woman within hours of her death, so her daughter could leave the room, catch her breath, get dressed, wash dishes, etc. Having never been with anyone so close to death, I was ecstatic. It was just as I'd heard and read, and imagined. At last. Such peace and beauty. I went home high! (Sounds nuts, perhaps!)
Recently I heard a speaker assert no one ever died wishing they'd watched more television (making as I recall the point material things don't matter in the end). Oh? I thought, my mind flying back to that first experience. High on the wall straight ahead of Claire where I would expect to see family photos or perhaps a crucifix, a large television screen showed nonstop close ups of jewelry. Far less experienced with television than the dying or human nature, I didn't get it. I'd heard the dying might like music, hymns, perhaps even a racous favorite, something from the Greatful Dead, to go out with. I'm almost too embarrassed to share this, but here goes anyway. At some point I asked the daughter if her mom liked music. "No", she replied pointing out the obvious, "She likes the shopping channel. She's a great shopper. We love to shop." That would fall high on my list of dumb things I wish I hadn't said. My first encounter with the "shopping channel"--at a death bed!
Now I'm enjoying a client who can speak for herself (help straighten me out if necessary)! When I arrive to sit with Dee, the tv's blaring and the fan's roaring. She rests on the couch behind the coffee table. In order to hear her weak voice, I head towards the tv; Dee nods as I turn down the volume. She keeps the old movie channel going (I'd never heard of that either. What planet am I from? Simply can't account for myself!) Then, if it seems like she'd like to talk, I perch on the couch with her so that I can hear over the din. Her voice is weak, her torso collapsing; her thoughts, clear. Early on I had occasion to explain that I visit for free because I'm keen on death and dying, personally certain the best is yet to come. She looked dubious; was silent. Just once she confided she knows her time is coming. That's enough. She seems curious about my views. I wait. There may or may not be occasion to share more. Some days she just dozes from the effects of painkillers.
I love being with the dying. They don't care that I cut my own hair or what kind of car I drive. My job is to be present. I leave with a sense of peace and return with a deep breath of anticipation. Since my own mother is receiving care across the country, this feels like a way to circulate the service and the gift.
Recently in the sauna at the fitness club a young couple told me about their blissful vacation picking huckleberries. Plans for long hikes were postponed day after day, as they fell into the peace of spending hours "just" gathering berries in the sun. I drifted back to holy hours picking diminuative cranberries jewels on the tundra. Suddenly Pam announced, "I'd like die picking berries." "Me too!", I exclaimed! "Let's set it up that way!" Hmm. Berries for thought.
This page dedicated to my sources of inspiration, hospice volunteer and advocate Dannion Brinkley. Author of Saved by the Light and At Peace in the Light. www.dannion.com
And Ram Dass, teacher extraordinaire, recent author of Still Here and subject of Lemle's documentary "Fierce Grace."
Dannion (center) with friends
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