Wednesday, July 11, 2018 (Day 1)
Finally, we are here: fasting begins today!
Since Starleaf is still on the drug tapering schedule, the drugs are crushed into a small amount of apple sauce for her. This is not ideal since the idea is to curtail liquid intake but this seems the best option.
Starleaf was exhilarated and excited the entire day, including going through photo albums with caregivers and staying up an hour past normal bedtime. She also had a long call with granddaughter Marina.
The daytime caregiver was born in Tibet and has English as a second language. Starleaf spent much of the day in teacher mode, training her in speech patterns and consonant pronunciation.
Thursday, July 12 (Day 2)
After her long day yesterday, Starleaf fell quickly asleep and slept through the night.
She started this day in an excited mood, meeting a new caregiver and continuing somewhat during the day through a visit by David and an afternoon meeting with the palliative care nurse. Later, she fixed dinner (!) for the caregiver who had failed to bring that meal. At 5:30, she had her first desire for water and used a glycerin swab for a bit.
In the evening, Starleaf was more subdued: she watched two more episodes of Anne with an E while putting more decorative stickers on sticky notes.
Also during the day, Monica, Ron and the caregiver rearranged the house furniture to accommodate the hospital bed when it arrives.
Friday, July 13 (Day 3)
Starleaf is revived after another good sleep. After rising, she spends an hour talking with the caregiver.
Today, her weight is 125 pounds. On Wednesday, at the start of the fasting, she was at 130 pounds.
The hospice social worker stops by in the late morning and she, Starleaf, Monica and Ron chat for over an hour.
Monica arranges with hospice for the hospital bed. It arrives in the afternoon and gets set up. Later, the hospice nurse arrives for a check-in.
In the evening, Starleaf takes a bath in her walk-in tub. Then she and Ron watch a Vera episode (since Netflix can’t load Anne with an E at the moment).
Saturday, July 14 (Day 4)
After sleeping from 11 pm to 6 am, Starleaf is up to spend two hours talking with the caregiver. Then she takes a 30-minute lie-down on her heating pad.
Today, she is starting on the next reduced taper level of the Parkinson’s drug. Her right arm is shaking a bit more and she is moving more deliberately since she feels more unsteady. Her weight is 122 pounds.
After meeting the daytime caregiver, she goes into the back yard with Monica and the caregiver for an enjoyable walk through the foliage. Later, Stacey comes over and they enjoy a several-hour stickering session.
In the afternoon, Starleaf washes her hair, then does some napping during an Anne with an E episode. Intermittently, she sits at the dining table to converse with Monica and the caregiver.
In the evening, Starleaf, Ron and Monica watch another Anne with an E episode. She is more awake during this episode and does some stickering while watching.
During the day, she is moving independently and comfortably, and also injecting humor from time to time.
Sunday, July 15 (Day 5)
Starleaf is up at 5:40 am with a high pain level. After her morphine dose, she sits with the caregiver to talk and watch a DVD. Since her pain is still high, she has another morphine dose after an hour. Another hour later, she is allowed a third dose but does not want it since it clouds her thinking.
After two hours with the caregiver, she lies on her heating pad on the bed, talking with Ron because she doesn’t want to fall asleep. After this, she does her morning routine and gets dressed for the day. Her weight is 120 pounds. She is moving carefully and talking somewhat sluggishly.
It’s Monica’s birthday. In addition to a humorous (no extra need for emotional sentiment at this time!) birthday card they have for Monica, Starleaf and Ron decide to create a “Crappy Birthday” card. Starleaf provides the card message and stickers the card with zoo animals after Ron quickly creates a card on the computer. Later, they add some poop emojis to make the card be officially crappy.
Starleaf and Monica spend the latter part of the morning discussing astrology, reviewing the charts of Monica and her daughters. Afterwards, Starleaf and the caregiver watch Saturday Night Live; then Starleaf takes her on an “art tour” of the house.
Later, Starleaf talks with the evening caregiver. Then, she and Ron watch another Anne with an E while she intermittently naps and does some stickering. She gets to bed at 11 pm.
A favorite story by Portia Nelson that Starleaf loves and would like to share:
AUTOBIOGRAPHY IN FIVE SHORT CHAPTERS
I
I walk down the street.
There is a deep hole in the sidewalk
I fall in.
I am lost … I am helpless.
It isn’t my fault.
It takes me forever to find a way out.
II
I walk down the same street.
There is a deep hole in the sidewalk.
I pretend I don’t see it.
I fall in again.
I can’t believe I am in the same place
but, it isn’t my fault.
It still takes a long time to get out.
III
I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there.
I still fall in … it’s a habit.
My eyes are open
I know where I am.
It is my fault.
I get out immediately.
IV
I walk down the same street
There is a deep hole in the sidewalk.
I walk around it.
V
I walk down another street.
by Portia Nelson
Monday, July 16, 2018 (Day 6)
Ron is awakened at 4 am by Starleaf’s raspy, loud breathing which soon quiets down. At 5:35, she awakens and is sluggish and speaks slowly. After her morphine dose, she talks with the nighttime caregiver for one and a half hours. Today, she has a high degree of thirst and uses glycerin swabs and Biotene mouthwash to help out.
After her morning cleanup routines, she meets the morning caregiver for the first time. Then Starleaf, Monica and Ron spend an hour with the hospice nurse and social worker. Afterwards, she spends another hour with the afternoon caregiver before settling with Ron to watch a Civilization episode (Netflix or Xfinity is not cooperating for Anne with an E)
Since Starleaf feels more dehydrated, she is getting mouth sprays, eye drops, wet washcloths and mouth rinses that are not swallowed. She often comments that what she really wants is a quart of Trader Joe’s Blood Orange Italian Soda, with ice cubes, please.
At various times during each day, Starleaf checks her “love note” emails and whatmattersnow guest comments. She is doing fewer replies now but tells Ron what to send out.
In the evening, Netflix is still out, so Starleaf and Ron watch a Traveling Wilbury’s DVD before going to be at 11:00.
Tuesday, July 17 (Day 7)
Starleaf wakes up Ron at 2:45 am to watch her on a trip to the bathroom and get a morphine dose. They both go back to sleep until 5:45.
Yesterday, Starleaf decided not to reduce further in her Rytary taper schedule since added shaking in her right hand makes holding things more difficult. Today, she is moving carefully and talking slowly but spends almost two hours talking with the nighttime caregiver, including going over a stack of photos. Then she and Ron lie on the bed while she does her heating pad in three positions on her back.
She finishes her morning routine just as the social worker arrives, then the nurse an hour later. Following these visits, Starleaf gives more astrology information to Monica then talks with the daytime caregiver. Her mouth is very dry and she keeps needing spray mists of water to allow her to keep talking (she also gets eye drops, nasal spray and a wet washcloth to refresh her face).
In the afternoon, Starleaf wants a scribe to do “secret” things (i.e., Starleaf has always left love/humor greeting cards for Ron about the house; she still has a stockpile of cards for him and wants someone to write her messages while she adds stickers since her writing is now hardly legible). The daytime caregiver does this for a while, then Stacey arrives and she and Starleaf have an enjoyable afternoon continuing the process. Later, Ron finds four cards in his bathroom cabinet (the cards arrive in groups now since time is short; one of the cards is aimed toward his morning bout with a cranky humidifier).
In the evening, Starleaf and Ron watch a documentary of a 1959 horse ride along the Pacific Crest Trail. The views give some idea of what grandson-in-law, Paul, is currently seeing.
The Tibetan-born evening caregiver talks with Starleaf for a brief time and then does a prayer for her. Starleaf wants a photo with the caregiver, then later has a photo taken of just herself. Starleaf is in bed to sleep at 9:40 pm.
Wednesday, July 18 (Day 8)
The fasting has gone on for a week now. Starleaf is still on her original morphine + lorazepam dose level and has not wanted an increase, she thinks it will make her more sleepy. She does sometimes, as is allowed, have the dose more frequently than the original four-hour interval.
Starleaf awakens Ron at 1:00 am and wants morphine and lorazepam (the lorazepam has to be powdered and served in a dollop of apple sauce; she likes it as a chaser for the morphine). Monica happens to awaken at the same time and helps with the dose preparation and presentation. Then all go back to sleep.
At 5:00 am, Starleaf has finished sleeping. She and Ron get up and go through her morning drugs and hygiene routine, then she spends one and a half hours talking with the nighttime caregiver. This morning she is taking very small steps and speaking even more slowly. She also needs very frequent water sprays in order to keep talking.
After a lie-down on her morning heating pad, Starleaf is up to talk with the daytime caregiver who she has not spent time with before. Later, she takes the caregiver on an art and Buddha walk through the house. She notes that her “monkeymind, ” always leaping from topic to topic, is gone after 25 years of seeking that attitude.
Stacey comes at mid-day while Monica goes to acupuncture and Ron goes to Death Café. Later in the afternoon, Starleaf listens to a chanting CD with Stacey and the daytime caregiver but can’t chant along because her mouth is too dry.
In the late afternoon, Starleaf and Ron try to watch another Anne with an E but Netflix is still out. They watch a Father Brown episode instead and both (!) take naps. Following this, Starleaf and the evening caretaker listen to CD’s of Coleman Barks reading Rumi and Hafiz poetry.
For the first time in about 15 years, Starleaf does not perform her 5-step tooth and gum cleaning. She and Ron get to bed at 8:35. . Ron is feeling sad this evening.
Thursday, July 19 (Day 9)
11:00 pm (actually still on July 18): Starleaf awakens Ron to go to the bathroom and get morphine and lorazepam doses.
1:00 am, Starleaf awakens Ron again for a repeat performance. Monica has put lorazepam/applesauce doses in the refrigerator to make the night dosing easier.
At 5:00 am, Starleaf is ready to get up. She is very weak and tottery but still strongly independent. She says she thinks this will be her last day of lucid thought. After getting through the morning drugs and hygiene, she lies on the bed talking with the nighttime caregiver for about one and a half hours. Afterwards, Ron brings her heating pad and they lie on the bed talking and weeping for about 45 minutes. Starleaf gets up for her next morphine dose at 9:20.
While Ron is off to an acupuncture appointment, Starleaf discusses with Monica whether someone can naturally go from a conscious state into death or if they have to go through an unconscious phase first. Monica tells her mom it’s okay for her to die as she wants. Starleaf says that she does not want to directly will her death but to let it happen naturally. Monica suggests she discuss this further with the daytime caregiver, who is a retired nurse.
After Ron comes home from acupuncture, he is less sad. He walks to the gym for a workout, has a salad lunch with Monica and then responds to emails and works on Wednesday’s website update. Starleaf spends this time talking with Monica and the daytime caregiver. She has to use many mouth sprays today in order to keep talking and she looks more gaunt.
After a nap, Ron is even less sad. Starleaf has spent the afternoon with Monica and the daytime caregiver, and has done some napping. Also, Stacey drops by for a short visit. At 5 pm, Monica takes pictures of her mom and Ron, then leaves for shopping and the gym. When the nighttime caregiver arrives, the caregiver rubs lotion on Starleaf’s hands while Starleaf dozes.
David arrives at 7:00 for a short visit. Today, Starleaf’s movement has been restricted to the bedroom, bathroom and adjacent sitting room (affectionately called the “Cat Room” since it was the principal lair of their beloved Bengal cat, Kanu Lani [“heavenly wildcat” in a Swahili-Hawaiian phrasing]). She gets to bed at 8:40.
Friday, July 20 (Day 10)
A day of big changes:
11:45 pm (still on Thursday), Starleaf wakes Ron for a trip to the bathroom and a morphine dose.
3:15 am, Starleaf’s legs collapse as she starts her next attempt to go to the bathroom but Ron catches her and gets her back onto the bed. Ron, Monica and the nighttime caregiver team up to get her onto a portable commode. The commode (with lid down) serves as a nice seat for her to get her dosing and do her morning hygiene routine. Since things are moving slowly, she is able to get a second morphine dose, then wants to lie on the bed some more.
After sleeping for another 30 minutes, Starleaf wants to be in a seated position – lying down is extremely uncomfortable. Ron “dances” her to the Cat Room where she sits and gets dressed for the day, then talks with the nighttime caregiver for an hour or more. Although slow in speech, Starleaf is still very lucid and enjoying small things (like frequent water sprays into her mouth!)
When the daytime caregiver arrives, Starleaf wants pictures taken, then sits talking with the caregiver. Both the hospice social worker (more pictures) and nurse come for a late morning visit, then Starleaf talks more, and naps some, with the daytime caregiver.
After the nurse visit, Starleaf is officially on hospice care rather than palliative care (just an insurance shift, the care is no different). Also, her morphine dosage is increased although the nurse says the dose is still low. During the day, Starleaf is dreading the next step, which she knows must come, of moving into the hospital bed.
About 2 pm, Starleaf sits on top of the portable commode while Monica and Ron move the loveseat that is her favorite seat into the large sitting / dining room area. Then they walk her into her new sitting spot. The loveseat is on casters and the area has a wood floor so they are able to move it to a spot she likes with a view of the back yard. Ron takes a nap and Monica goes to acupuncture while Starleaf talks with Stacey and the daytime caregiver.
Starleaf gets a foot and hand/arm massage from the evening caregiver, then Ron, Monica and the caregiver move her to the hospital bed. Since the loveseat and hospital bed are on wheels, and a comfortable chair is on moving pads, it’s relatively easy to do the transfer to the bed and then reposition the area. Later, Starleaf does her 5-step tooth and gum cleaning.
Monica takes the evening shift and sits with her mom until 1:00 am, listening first to poetry on cassette tapes then switching to audio stories on CD when the tape player sound deteriorates. Starleaf is hyperaware from sleeping in a new location with different sounds and wakes often. Ron gets a few hours of sleep.
Saturday, July 21 (Day 11)
Ron takes over from Monica just after 1 am. They listen to Willa Cather’s “My Antonia” (Ann-toe-nee-uh) with Starleaf waking after every CD change to get more morphine. Her longest sleep interval is about two hours.
Just after 5:00, she is ready to go through her morning hygiene routine. She tells Ron that she wants to stay in bed rather than doing transfers to the loveseat or commode because the moves are too painful. She is still lucid today but talking slowly and, of course, wanting to do as many things for herself as she is able.
After her morning cleanup, she talks with the nighttime and then daytime caregivers. At 10:30, a hospice bathing specialist arrives to give her a full bathing and change the bed linens. This is followed by the daytime caregiver rubbing Biofreeze on her back and hip, then applying lotion to her skin – Starleaf is delighted by all this.
In the afternoon, she wants to listen to Warren Zevon. She and Ron both really like the opening “Poor Poor Pitiful Me” on the CD as well as numerous other of the songs. She wants the daytime caregiver to listen carefully to the lyrics on “Excitable Boy” (this is a source of humor shared with Ron because she has always described herself as an “excitable girl” to him – although not in the way of the song – since it has always taken her a couple of hours to calm down for bed after going to any evening event).
In the evening, she has Ron bring in stacks of photos to share with the evening caregiver. She goes through a stack of photos, has a nap for perhaps an hour, then goes through another stack. Also, she knows it is Saturday so she tells Ron to record Saturday Night Live for her.
After the evening hygiene routine, minus the tooth/gum cleaning, she settles down with Monica beside her. They listen to CD’s in between naps.
Sunday, July 22 (Day 12)
Ron replaces Monica at 2:00 am. Starleaf awakens every 1-2 hours, getting more morphine/lorazepam each time plus a wet washcloth rubbed over her face, neck and chest plus a nasal spray plus water spritzed into her mouth so she can swallow the lorazepam particles (and also keep talking).
She doesn’t want to listen to CD’s. During one of the awake sessions, the nighttime caregiver thinks she sees a raccoon outside the adjacent glass door but Starleaf correctly tells her it’s a ‘possum. Later, after it becomes daylight, she also sees Steller’s jays, a squirrel and the white neighborhood cat outside.
Starleaf is speaking more slowly today and sometimes appears to nap for a few moments between questions and answers. She has, however, not lost her sense of humor: still joking about blood orange soda, pantomiming that she will collapse and flop over while sitting up, and waving her arms about in a seated “happy dance.” Also, she is somehow managing to still sneak love cards into Ron’s bathroom medicine cabinet.
After a hand rub from the daytime caregiver and listening to chanting on a CD, Starleaf sleeps for over four hours. She awakens only after Monica gives her a morphine dose for the first time while she is sleeping.
She gets massages over various parts of her body from the daytime and evening caregivers. Monica goes out and finds a soft pillow to ease Starleaf’s tailbone pain (proper seat cushioning has been a problem for years; her first night in the hospital bed, the problem was really bad … until we finally discovered a lip moisturizer tube had slipped under her).
In the evening, Starleaf and Monica listen to some CD’s but Starleaf is restless and uncomfortable and does not fall asleep until almost midnight.
Monday, July 23 (Day 13)
The toughest day yet:
Starleaf awakens just after 3:00, having had about four hours of sleep. She is not comfortable in any position although the daytime caregiver and hospice nurse try many lying and seating positions. She is narcoleptic, seeming to sleep between words and in the midst of actions. When she is awake, she wants water sprays into her mouth.
All is not bad: she mentions the flowers from Lyn and Steve, the shadows outside in the night, the changing light at daybreak and the greenery in the daylight. Best of all, the bathing specialist returns to give her another full bath which she says is “wonderful.” Although her voice is soft and weak, she does raise it several times for humorous emphasis. Every time she sees Ron walk by in the room, she wants a smooch passage toll.
The hospice nurse suggests moving the morphine + lorazepam schedule to every two hours (previously four hours). The nurse also orders an alternating pressure air mattress but it arrives while Starleaf is sleeping so not installed (it is installed by Ron, Monica and the caregiver when Starleaf is again awake and ready to be moved to a horizontal position).
When the evening Visiting Angel caregiver arrives and reviews the situation, she says “This woman is on hospice care, why is she suffering.” Monica goes to call the hospice nurse while Ron gets goodnight smooches before going to bed.
Monica gets the okay to increase the morphine and lorazepam dosage but that still does not settle Starleaf. Monica calls again and is told to try another increase in dosage. Starleaf asks Monica to lie in bed with her and they spoon for a bit. At last, Starleaf is asleep and resting.
Tuesday, July 24 (Day 14)
When Ron gets up at 1:30 to replace Monica, she tells him of the dosage increase and how the evening went. Ron is delighted to see Starleaf asleep, resting and out of pain.
When the daytime caregiver arrives (the same one who had been here until 11:00 the night before), she reads Rumi poetry and other stories to the sleeping Starleaf.
When Monica awakens, she has been dreaming of her mom and is very sad her mom is unconscious: Monica would like her to be both conscious and unconscious. Ron is pleased that she is unconscious and out of pain.
At 11:30, the caregiver calls Ron and Monica. Starleaf’s breath intervals have become very long and the experienced caregiver thinks she is dying. Starleaf’s face is very white. Ron and Monica whisper some I love you’s and kiss her face.
Starleaf is dead.
Starleaf VSED 