About the first of April, 2018
Starleaf announces to Ron and Monica that she has decided to end her life by fasting. Her plan is to do this after her birthday in July. This is not a total surprise since her elevated pain levels have not reduced since December and a Baclophen experience in March has made her feel as if she is losing control. She has been acquiring knowledge over 25 years of hospice training and support, and death studies so that she will have control of her own end of life.
Tuesday, April 10
Starleaf announces her VSED plans to our PAIRS relationship group.
Friday, April 13
Ron picks up Monica in Portland, where she has spent the night with her daughter Ruby.
On the drive to Corvallis, Monica invites Ron to come live on Maui with her and Volker after the death of her mother. Ron expects to stay in Corvallis for at least the year following the death but Maui does sound appealing for later.
Upon arrival in Corvallis, Monica picks out a salad spinner and they stop by Market of Choice for food supplies. There will be lots of salads while Monica is around.
Saturday, April 14
Ron is a ham radio operator who works with the county Amateur Radio Emergency Services group. He spends much of this day at a practice emergency drill. He tells the two people at his drill site of Starleaf’s planned VSED.
Starleaf and Monica start going through the house to see which items Monica would like to get now.
Monday, April 16
Monica leaves to return to Maui.
Tuesday, April 17 (… and previous and following days …)
Starleaf is energized by her decision to do the VSED. Each day she awakens thinking of a new part of the house to clear out, then goes to work at doing the clearing. Many items get distributed to people who will enjoy or make the best use of the item; Ron makes many trips to Goodwill to drop off the items not designated to go to others.
Also during this period, Ron types many letters informing her loved ones of her decision.
Tuesday, April 24
Nuisance! Starleaf has a pain on one side of her mouth that seems associated with an existing bridge. She is worried about tweaking her neck during dental work and wants only a quick, minimal, temporary repair. Ron made the appointment earlier and also spoke to the dentist about her coming VSED so the dentist knows only a temporary fix is needed. As it turns out, the dentist can’t spot a problem on the xrays or by probing so it’s likely just a sensitivity and no dental work will be needed before the VSED. The dentist’s receptionist has a friendly relationship with Starleaf and gives Starleaf a vase of lovely purple tulips and yellow daffodils when she leaves.
Talked with Christina Kucera of Compassion & Choices about the VSED and later received an email of related information. This described the formal approach for getting hospice involved.
April 29
Starleaf begins sending letters to loved ones about her VSED plans. After setting up the basic informative text, each letter is personalized with an introduction and a closing that expresses Starleaf’s appreciation of them.
Wednesday, May 2
Ron meets with several members of his New Warriors mens group and tells them of Starleaf’s VSED plans.
Saturday, May 5
Ron goes to the Corvallis library for an Oregon-Humanities-sponsored “Talking About Dying” event. In the hour and a half session, with 20 people (young and old), there is a round robin for comments after 3-person groups talk about their experiences with death. He learns there is a Death Café that meets in Corvallis.
Wednesday, May 9
Ron tries to attend the Corvallis Death Café but was given the wrong time and misses the meeting.
Wednesday, May 16
Appointment with Dr. Lauren Gray who reviews Starleaf’s misery list. She starts the POLST registration process and will notify the Lumina hospice
Ron goes to the Corvallis Death Café and presents an open question on handling the three days after death at home scenario.
Saturday, May 19
Monica, Marina and Ruby arrive. It’s the best day in months for Starleaf as she is able to give away specially selected items and relate stories from the past.
Ron, Monica, Marina and Ruby go to Nearly Normal’s for a late lunch. They order Starleaf’s 25-year favorite, now special, meal to go (“steamer” [steamed vegetables over brown rice] with black beans, two orders of cheese sprinkled all over the top and two corn tortillas; originally a standard menu item known as Norm’s Healthy Choice); halfway through the order the counter person recognizes the specification, finishes the “two orders of cheese and two corn tortillas” part and says “this is for Starleaf, right?”
Once everyone is back home, there are more stories and sharing. Eventually, Starleaf takes a break to eat half the meal that was brought home (at Nearly Normal’s, Ron usually eats her remainders) and saves the rest for the next day.
Sunday, May 20
40 years! Starleaf and Ron met on May 20, 1978, at a “Social Skills for Singles” class held at the Holiday Inn in Costa Mesa, California. Despite getting a delayed start (she was 39 and he was 34), they have spent over half their lives together. They go through their saved stacks of anniversary cards and reminisce.
Monica and Marina want to go to the gym so Ron meets them there to set up guest memberships.
Later, Monica and both granddaughters return for more stories and sharing.
Wednesday, May 23
Bucket list day! Starleaf’s remaining item is a ride on the carousel in Albany, 15 miles away. Starleaf has a scratchy voice but is determined to go anyway. Ron and Monica take her at 11:00 and it’s a great day – she rides on her preferred zebra (see photo; Monica also takes some videos).
Thursday, May 24
Volker arrives from Maui. Starleaf has somewhat lost her voice with the start of a cold/virus/allergy situation; this will develop into a cough that progressively worsens over the next 10 days. After a short interaction, Ron, Monica and Volker go off for lunch, leaving Starleaf to rest.
Friday, May 25, 2018
Dr. Helen Gao, a Lumina hospice gerontologist and palliative care specialist, comes to the house to meet with Starleaf, Ron and Monica. The planned date to start the VSED will be July 11: birthday on July 6, one normal day on July 7, then three days of 500 calories per day to prep for full fasting (a Phyllis Shacter website recommendation).
Monica is strongly affected by the meeting with Dr. Gao. This conversation is making her mother’s death seem much more real.
Dr. Gao will review Starleaf’s medications and provide a schedule for tapering off, as appropriate. She also asks us to send some items of information to Dr. Gray, which Ron does after the meeting.
Later in the day, Lumina calls to say a copy of the drug tapering schedule is available and Ron stops by to pick it up.
Saturday, May 26
Monica and Volker enjoy the Corvallis Farmer’s Market, with a stop at Tried and True Coffee.
Volker appears on the back deck carrying an extraordinary, multi-type floral hanging basket. It gets positioned on the back deck and attached to the drip system for the summer.
Starleaf and Volker have an emotional good-bye (he has friends coming from Germany for June/July so he won’t be able to come back again). A few minutes after Volker leaves for the airport, Monica discovers his wallet was left behind and calls him back. Fortunately, he had not gotten very far.
Sunday, May 27
Ron and Monica go shopping at Walmart and get most of the disposables expected to be needed during the VSED. There are no lemon-scented swabs but the Walmart pharmacist suggests Rice’s Pharmacy as a source. However, Rice’s is closed for the day.
Monday, May 28
Monica goes back to Maui today, leading to a Starleaf and Monica morning cry period.
Starleaf found a set of stanzas for “Old Dan Tucker” which were copied by her father for her to use in teaching the song to her second-graders. Ron finds some Youtube versions for them to listen too. They also listen to “The Mademoiselle from Armentieres”, another song taught her by her father.
On the drive to the Eugene airport, Ron and Monica discuss what is left to handle. The only open item is lemon-scented glycerin swabs. Monica checks with Rice’s Pharmacy but they are still closed for Memorial Day. Monica will order the swabs from Amazon but would still like to have Rice’s for a backup source so she will call them after she is back on Maui.
Monica returns to Maui … but due to a plane delay in Eugene, is too late for the Maui flight from Seattle. She has to spend the night in Seattle; Starleaf does not sleep well and emails Monica in the middle of the night.
Wednesday, May 30
Ron goes to Death Café again and reports that 3 days at home after death is acceptable to the medical examiner.
Sunday, June 3
Starleaf’s cough has gotten very bad so she and Ron go to Immediate Care. She is worried about pneumonia but an x-ray shows no problem with that – yay! The scary chest rattles were caused by asthma. After a nebulizer treatment, she goes home with two prescriptions.
Wednesday, June 6
Starleaf gets up one and a half hours early for a rescheduled physical therapy appointment and she also did not sleep well during the night. During the day, she feels isolated because of her inability to talk without coughing and Ron staying occupied with other things. After an active day, she is frazzled, depleted and sobbing at bedtime.
Thursday, June 7
After a better night’s sleep, Starleaf is more back to normal, except for talking. Ron hangs around with her much of the day so she feels less isolated and is in good spirits.
Saturday, June 9
Starleaf and Monica talk for 37 minutes – certain to be good for both of them. Ron adds Buddhist philosophy information to the web site.
Sunday, June 10
Starleaf gets reiki from Ron. It’s uncomfortable for her to lie down so it’s kept to a short session.
While cleaning the spacer for her inhaler, Ron discovered he had failed to remove the cap from the inhaler so it had not been working (:-<).
Monday, June 11
Starleaf successfully used a heating pad to keep her feet warm in the night. Cold feet in bed seem to have become a problem in the last month. In the morning, her asthma/bronchitis is definitely better.
Lunch is salmon takeout from Big River – Yum!
One month to go before full fasting.
Wednesday, June 13
Starleaf and Monica talk again. Starleaf’s voice is a bit better, maybe because the inhaler is now working.
Starleaf gets her weekly acupuncture treatment which seems to give her some headache relief each time.
Thursday, June 14
Ron goes to a potluck at his old work place, seeing old friends and other retirees he has worked with.
Friday, June 15
Ron fixes risotto for dinner, one of Starleaf’s favorites.
Sunday, June 17, 2018
Ron’s birthday! Starleaf provides her hoarded supply of tiger stamps (Ron’s totem animal) and an Amazon gift certificate arrives from Avis and Larry.
Also, Monica is back for the week. She and Starleaf spend the evening talking and sharing.
Monday, June 18
Starleaf gets a physical therapy treatment that had previously been canceled – a nice surprise!
A box of presents arrives from Avis and lare. Starleaf, Monica and Ron spend a delightful time going through the gifts.
Ron is off to an amateur radio meeting in the evening so Starleaf and Monica have another evening of talking and sharing, interspersed with an hour of Pema Chodron.
Tuesday, June 19
An expected acupuncture treatment turns out to be for the wrong day – Starleaf is not fazed: she and Ron go for a delectable gelato treat instead.
Her last PAIRS group meeting is this evening: Starleaf wants to withdraw, rest and prepare for bed by 7pm or so. Ron convinces her to stay up and be involved for the rest of the meeting. By 8pm, Starleaf is exhausted and finally withdraws because she’s so tired and in serious pain from sitting so long. She finishes the evening over-tired, in great pain and hurt and angry with Ron. They talk it over and both get a good night’s sleep.
Wednesday, June 20
More discussion of last night’s upset; both Ron and Starleaf will try for better behavior. Starleaf resolves to be more aggressive/pushy in protecting her needs; Ron resolves to follow her requests more closely.
Starleaf goes to a delightful Tea with David, including home-made, gluten-free scones. David also presents piano-playing and a vocal recital. Starleaf loves the performance.
After the tea, she goes with Ron and Monica to a medical supply store and gets a new cushion to try for more comfort while sitting.
Ron and Monica go to a Death Café meeting.
Thursday, June 21
Ron and Monica visit the LOVE Med Shed and bring back a 3-wheel walker for Starleaf that seems more ideal than any they have seen. Starleaf tries it and it seems reasonable.
An afternoon meeting with two potential caregivers results in a good start to the scheduling during the expected VSED period. After the meeting, Monica checked with the Visiting Angels agency to determine advance notification, details of scheduling and rates for their caregivers.
Later, Monica reviews the items gathered to support the VSED against her phyllisschacter.com list and found mouth swabs were missing. Ron ordered the swabs for Monday, June 25 arrival.
Friday, June 22
Monica returns to Maui. She plans to return on July 8.
Stacey brings a privacy screen to be used for bed screening since the hospital bed for the VSED will be in line with the front door (location chosen to provide Starleaf the best continuing view of the back yard area while in bed).
Saturday, June 23
Granddaughters Ruby and Marina, with Marina’s husband Paul, arrive at 2:30. This is the first time Starleaf and Ron have met Paul. Ron and Paul sit on the deck to talk while Starleaf talks with Ruby and Marina inside. After an hour, Ron, the granddaughters and Paul go to Nearly Normals for dinner and to bring back Starleaf’s favorite meal.
Sunday, June 24
Ruby, Marina and Paul come at 10:00 am. Ron and Paul go for a drive, leaving Starleaf for more time with her granddaughters. Later, Ron, Ruby, Marina and Paul go to Eats & Treats for lunch (bringing back ice cream sandwiches). Starleaf spends another hour with the visitors in the afternoon before they leave at 4:30 for Ruby to catch the Amtrak train to Portland. Starleaf has been energized by the visit.
Monday, June 25
Marina and Paul arrive at 11:30 and stay for an hour before leaving for Portland.
The afternoon physical therapy session is followed by a trip to the Hallmark store to select several “singing” cards to provide humor during the VSED.
Tuesday, June 26
Starleaf goes for acupuncture in the afternoon. Then Ron gets a take-out dinner from Big River (salmon for Starleaf!) for the evening.
Wednesday, June 27
David provides an afternoon visit with a singing session for Starleaf while Ron goes to acupuncture.
Ron goes to Death Café in the evening.
Thursday, June 28
This is the last fully “normal” day: tomorrow, the drug taper schedule begins with a reduction in one of the Parkinson’s drugs. To make the drug scheduling more straightforward, Starleaf and Ron make up zip-lock bags with the doses for each day of the tapering.
Stacey spends much of the afternoon with Starleaf. Ron and Monica have a long talk, including discussion on how to handle the drug tapering if it increases the Starleaf misery – we’d like her to have a “good” week before her birthday rather than one of increased misery.
Friday, June 29
The first day on the lowered drug schedule and it seems relatively normal. This first step reduces the drug (Rytary) by about 30%.
Saturday, June 30
Starleaf goes for a haircut, a free one since the salon owners know this will be her last. After the haircut, Starleaf picks out Sunflowers at Market of Choice and arranges them after they return home.
Sunday, July 1
Starleaf has a “bad” day and decides she does not want to go to the next reduced level of the tapering. She will stay at the current level for at least another day and possibly until her birthday on Friday.
Monday, July 2
Starleaf goes to an afternoon physical therapy session. Afterwards, Lyn comes by and they spend time reviewing some of the items Starleaf wants to give away.
Today, she is feeling a bit better than the previous day. She notes more arm tremor from the reduced drug level and will not go to a lower dose on Tuesday.
Tuesday, July 3
Afternoon acupuncture, followed by a visit to Trader Joe’s.
Wednesday, July 4
Ron goes to Death Café, then brings home the Death Café leader, Jon, for an enjoyable hour’s philosophical discussion of death with Starleaf.
The holiday meal is a gluten-free pizza, not perfect since the requested olives were left off, but the meal is enjoyable anyway. Starleaf accompanies the pizza with blood orange Italian soda drunk from her Lalique “Angel” glass.
Thursday, July 5
Starleaf has shrimp cocktail for lunch, one of her favorites.
In the evening, she and Ron start watching “Anne with an E” on Netflix. Starleaf has always had an affinity for Anne of Green Gables as another skinny, smart red-headed girl who felt out of place.
Friday, July 6
Starleaf is 80! She has made it to her “born-day” milestone – as a literalist, she maintains the people only have one “birthday,” the rest are birth anniversaries (a rigorous view carried over from her father).
An early morning look in the mirror shows a new red zit on her face: will teenage agonies never end?
As she goes through her birthday shrine, there are “singing” birthday cards from Monica and an old one from Ron, as well as love letters from both. The “singing” cards will be added to her earlier selections to provide some light-heartedness during the VSED.
Starleaf spends most of the day placing decorative stickers on sticky-note pads that will be distributed to her friends. She decides against answering the phone for the day. However, Ron answers calls while he is at home allowing Monica (who has mostly lost her voice from a virus) and Volker to sing Happy Birthday; later, Ron’s sister Nancy, along with Cookie and Ruth, also provide a Happy Birthday serenade.
Dinner is her favorite brought from Nearly Normal’s, followed by ½ an Eats & Treats ice cream sandwich for dessert. In the evening, Starleaf does more stickering and then watches another episode of Anne with an E.
Since it has been a busy day, Starleaf and Ron realize in the evening that they did not hear from hospice this week. Starleaf decides to stay at the current reduced drug level until we get notification as to when hospice will start.
Saturday, July 7
Starleaf springs out of bed (like a robotic kangaroo, she says) to spend the day doing more stickering of note pads. Marina calls during the day with her birthday greetings.
Dinner is the other half of her leftover meal from Nearly Normal’s of the day before plus ¼ of an ice cream sandwich.
Sunday, July 8
Again, Starleaf is out of bed early to do a final cleanup of the remaining stickers and to find a few drawers still not totally cleaned out.
Jennifer and 2-year-old Arya stop by in the late morning. Young girls are a special delight for Starleaf so the visit is a fine treat.
In the afternoon and evening, Starleaf and Ron watch more episodes of Ann with an E. On Sunday evenings, they go through their schedule for the coming week. Ron finds this one, showing the start of the VSED, as the hardest one ever.
Monica arrives about 9 pm, sill a bit hoarse from her virus.
For many years, Starleaf has burned candles for her friends and loved ones. Anyone who would like to give her the same type of support can do the following candle affirmation on Wednesday, July 11, and other days during her VSED.
Candles for the Ill or Dying
(Affirmation from Candle Power, Dorothee L. Mella, Domel Artbooks, 1978)
For the ill or dying, use 3 candles: one each of bright red, medium blue and white. Light the candles in this order:
Red candle – light with the prayer of releasing physical pain and stress.
Blue candle – light to alleviate any remaining mental stress and unfulfilled desires.
White candle – light to abolish fear of the unknown as the patient prepares for the renewal of life, death or transition.
Affirmation:
In the name of Light,
may this loved person
(—- say person’s name here —)
be released of all controlling energies
in the charge of the
Great Spirit of the Universe
in perfect harmony and peace.
Burning times:
Red candle: 1 hour
Blue candle: 3 hours
White candle: 6 hours
Monday, July 9
Two sets of caregivers come for a meeting in the morning. After a small lunch, Starleaf goes with Monica for physical therapy in the afternoon.
Dinner is half of an Amy’s casserole, followed by ¼ of an ice cream sandwich.
Tuesday, July 10
Yay! Lumina Hospice and Palliative Care is here for an introductory meeting to start their services. Now that they have shown up, Starleaf will resume her Rytary tapering schedule. Starleaf is elated for the rest of the day.
Lunch is a Starleaf special sandwich: cinnamon raisin bread with peanut butter, mayonnaise, cheese and lettuce. Starleaf and Stacey spend the afternoon together while Monica and Ron go to the gym.
Starleaf’s last meal is steamed vegetables with cheese on quinoa, prepared by Monica. Dessert is ½ of an Eats & Treats ice cream sandwich.
In the evening, Starleaf and Monica do more cleaning out of drawers while Ron handles household chores.
Starleaf VSED 