Rhyme, Meter, Music and Memory
Chapter X , Melba Notebooks
Dec 26, 1997 Sophie: Di, Ja and Dot and I were talking about an idea. We’d like to try playing some music they like for an hour or two, three times a day. I know you hate most of it, like especially the opera. And Gilbert and Sullivan. Yowling don’t you say? Incidentally Ja will be here for Mom’s birthday. Dot or I will meet hm at the airport. I stuck in what we talked about the music from Ja’s email. Sorry, he’s dense sometimes!
It’s like food for them. Music and poetry are food for their mind. For whatever reason, people seem to remember music and songs from their youth longer than anything else. With Bob and Melba especially, poetry is the same way. Sometimes, when I find them stuck to the dining room table like barnacles looking at stuff they think they are reading, (not!), I can usually get their juices going by asking Dad to quote a poem, like a Kipling. He can’t do it long because he starts to cry. Then Mom takes over. They will go on that way for an hour. When he forgets she fills in and vice versa. Actually she rarely forgets though.
Ja forgets the real stuff: You’ll have to adjust Dad’s hearing aid for him, or use the little pocket radio aid. Otherwise you need to play it so loud you and the whole town will go crazy or deaf or both. So I left some earplugs by the record player. They are wax and work pretty well.
I’ve put most of the records in three piles on the counter: try playing one in each pile about mealtime every day, before or after doesn’t matter:
1) The Gilbert and Sullivans, the Rancheros and Panamanian stuff
2) The Operas
3) The symphonies.
The dose (Ha!) is one or two records, three times a day. No, not by mouth or any other place. Thanks, Di. Like Ja says YAAGDJ. You Are A Goddamn Jewel. (double ha!)
Dec 29, 1997 3PM Di: Well this jewel may crack. They are listening to something awful. But it’s not making them sick. They sure are tough. It’s like rotten milk or old food, they are fine with it! My question is, why are you trying to get me to quit!? What did I do to deserve this.
Dec 31, 1997 9 AM Di: Whooopie.
Jan 3, 1998 Dot: HAPPY BIRTHDAY MELBA!!! # 90!
9:30 Di: Up, bath, Dressed. Like you said, we’ve been listening to all that noise I can’t stand most every day since Christmas. I may lose my mind, what’s left. But they like it. Problem is I have to play it so loud it cooks my brain through the wax ear plugs.
PM: Ja: Great, Di! Take some of the B vitamins for your brain. Today they were talking about the Philippines. Baguio. Tayabas. The earthquake at a Manila hotel when they moved outside to sleep on cots. The guy who polished the wooden floor by skating around on dried coconut husks. The Grete Maersk* freighter that took them home, (1938?) stopping in Hong Kong where a beggar said to me
“ No mommie no poppy no whisky soda”; money with holes; a tilted cable car up a steep hill; and snow on Xmas eve at sea.
Bob never speaks of troubles. Or of accomplishments either; for example he never mentions his central role in the theft of the ‘Stanford Axe’. I hear of that from the news media years later. In the Philippines, I recall the open boat trip to Tayabas; piles of coconuts, a swampy ride on the back of a water buffalo to a remote jungle mine, geckos, the log ladder up to the bamboo structure on stilts, where there was no need to sweep because anything that dropped on the ‘floor’ fell through the empty space between the bamboo slats. I remember dad treating an Igorot miner’s tropical ulcer with a dilute Clorox solution. Or maybe lye?
But more significant was what I didn’t know: There was a sit- down strike by the hard rock underground miners of the Tayabas gold mine. Bob made the mistake of defending them to the administration. He was soon found lacking.. That was why we went home on the Grete Maersk, and the reason we were not in the Philippines at the start of WWII, and why he could not find a job as a mining engineer for the next four years, having to work as an underground miner himself. He was given the job of drilling blast holes and placing dynamite in Holden Washington, one of the largest underground Copper mines in the country then. There he finally met the diamond drill manufacture E J Longyear, who hired him for work consistent with his training. I didn’t know about much of this until the music dredged up so much of the past and exposed it to the present.
* The Danish shipping line of Maersk is still one of the world’s greatest commercial fleets. The first Grete Maersk that carried us to the US was built in 1937, with only a 9000 metric tonne displacement capacity. It took on a small cadre of passengers as many similar cargo ships still do. However it is long gone. The new Grete Maersk is a container ship with a width of 43 meters and draft of 15 meters, carries about 8000 containers, with a a gross register tonnage (GRT) of approximately 98 thousand metric tonnes.
The Melba Notebooks Index
The Melba Notebooks are a collection of 26 posts or chapters, including a prologue and an epilogue. They are adapted from five spiral bound notebooks dating from 1995 to 2002; the notebooks consist of hand written entries by caregivers and family who make it possible for this couple, whose lives spanned the last century, to live in their home until their ashes are scattered in places meaningful to them; they are dialogue, often in moving or hilarious terms, about old age, and about being a child or a caregiver to the very aged. Some details are altered, but the voices are genuine. The author’s comments are in italics.
Chapter I (Apples and Ammonia)
Chapter II (Cat and Kipling)
Chapter III (A Nurse Engineer, Age 88)
Chapter IV (Melba’s Remembered Ranch)
Chapter V (A Christmas Gift)
Chapter VI (A Last Big Game)
Chapter VII (Melba’s River of Menus)
Chapter VIII (Bob’s Drug War)
Chapter IX ( The Vengeful Prostate)
Chapter X Rhyme, Music, Meter, and Memory
http://nwalmanac.wordpress.com/2011/06/06/rhyme-meter-music-and-memory-2/
Chapter XI (Hips, Fish and Shits)
Chapter XII (The 91st Years)
Chapter XIII (Remanso)
Chapter XIV (Striking Out)
Chapter XV (Holding On)
Chapter XVI (A Mountain Calls)
Chapter XVII (The Shi Bear)
Chapter XVIII (Everything is Covered)
Chapter XIX (A Perfect Whole From Imperfect Parts)
Chapter XX ( Junkmail Vultures & Panhandlers)
Chapter XXI (Gobble-uns’ll Get You)
Chapter XXII (Moving to 24-7 Home Care)
Chapter XXIII (Letting Go)
Chapter XXIV (The Electric Train)
The Nurse Engineer, age 88
The Melba Notebooks, Chapter III
Melba is home recovering from a broken hip, and Bob assumes the household chores and much of the nursing care. The notebooks, for the first time are heavily populated with Bob’s entries. His handwriting has a prominent forward slant, is written in fine point graphite or red pencil, or rarely, in pen… never ballpoint. The tightly written words, despite idiosyncratic pruning, flow easily. His family letters have always been warm, newsy. Though sprinkled with light clever humor there is no idle gossip and little that is revealing or intimate. His regular writingnow fills the pages of the Notebook with grammatically spare details. In an ironic twist the entries, seem almost like hospital nurses notes: crisp, detailed, abbreviated, and detached. The nurse’s uniform, however, consists of baggy soiled khaki pants, an exhausted old short sleeved shirt and incredibly old dirty tennis shoes, unlaced in teen fashion. Bob never wears his new clothes, saving them for- What? Unlike the Walden Pond philosopher, he sees no point in mending them.
12/29/95 Bob: 6:30 AM passed about 120 cc Drank ensure and ice cream. ½ percocet I waked her from a very sound sleep.
10:30AM Visting Nurse: all morning meds + ½ percocet. Walked about the house well. Took 1 can ensure and ½ can apricot juice.
1:00PM Li: Please check loaf of french bread. Don’t give any to Melba:moldy, but Bob didn’t want to throw away. Both in great spirits. Happy New Year All!
2:00PM Bob: Small bowl of clam chowder and finishing an ensure. Icecream from this morning. ½ pill at 2 PM
4:00PM S: Asked for pain pill. ½ percocet. sliver of pie and ice cream.
10:00 PM percocet ½ ensure I can.
12/30/95 Bob:
3:00AM went to bathroom
4:00 AM 1 can ensure plus ice cream
7:40 finished ensure ½ percocet
8:00 AM started to bathroom before I heard her.
9:00 AM small porridge orange juice, finshed ensure
11:10 Sophie: All meds and ½ percocet. Wgt 92 lb 1 ensure, ½ piece peach pie
1:30PM Dot: ½ grilled cheese sandwich and juice. To bathroom by herself.
1 percocet. To bed listening to Emily Dickenson tape. Recorder runs slow; can anyone fix it? Also, Melba can’t quite push buttons. Is there an easier one around?
4:30 PM Bob: Had one can apricot during afternoon and at 4:30 one ensure with ice cream.
6:00 PM small serving of pea soup, two small crackers, and a fair sized dish of vanilla ice cream in dining room.
10:00 PM Sophie: Took her outside and gave 1/2 zoloft. Also 2 tylenol ext caps. ½ cup ice cream, ½ cup H20
12/31/95 Bob: 4:30AM Made ensure with ice cream but only about 1/3 taken.
7:30 AM ate very small serving grapenuts and drank a little more of the ensure-only abut half altogether.
The old year passes without a nod from Bob, and the newborn year begins much like the one gone by. Bob’s dutiful entries continue, interrupted by those of daughters Dot and Sophie, visitors, Li a housekeeper, Jen , and hairdresser the visiting nurse. Li is loyal, thoughtful and kind, a Norwegian not given to loquacity. She leaves the home brightened by her gentle quiet humor, and thoughtful attentions. Moreover she is trim and attractive. Bob, who sometimes resents intruders, is putty in her hands. Jen appears for the first time. She is Melba’s long time hair dresser, and moreover her friend, has a beauty shop in her home a few blocks away, where Melba has been a frequent customer. She is heavy set, direct, offers no quarter, and ignores the fact that Bob doesn’t approve of beauty parlors or hair dressers. He is out of the loop as far as all the ladies are concerned, and when Jen appears to do Melba’s hair she adds other tasks as she feels are needed.
1/1/96 7:30 -8:30 Sophie: Took herself to the bathroom. Said she didn’t feel well. ?diarrhea.
10:45 Visiting nurse: Meds and percocet and ensure. I took the DOSS out because of the loose stools. After the percocet took hold Melba felt a lot better and got up walking. We will watch but I don’t think the loose stools are from the Zoloft.
3:00 PM Bob: Melba had one ensure, also one at 11 AM. I gave her squash and broccoli. She ate a pretty fair amount of squash but hardly any broccoli. She ate a all but the lower crust of a small piece of pie.
Sophie: Dad is doing such a terrific job!
1/2/96 Bob: 1:10AM Bedpan wi b m. some spilled.
4:20 AM up to bathroom with bad bad spill
8:30 AM up to bathroom. Gave ½ percocet and placed hot water bottle and afgan. She’s cold. Gave hot tea.
10:30AM Visiting nurse Temp 97.5 States she feels better. All meds given. Milk toast given. Had a tub bath. Tylenol est tab, 2 given. Ensure, 1 can given.
12:30 Bob: Not hungry.
2:00 Di: brought chicken noodle soup but none eaten
“ squash and broccoli ” ”doesn’t want ensure.
4:00 PM Sophie: ½ percocet. Ate milk toast-almost all of it. Ate ice cream off top of pie.
½ can ensure c ¼ cup milk
5:00 PM Out on porch. Walked there. ½ snicker bar. Watched K-9 movie, liked it/laughing. No diarrhea from 4 to 6:00 and Bob thinks (recalls) no more that day. 8:00PM ate ensure.
Bob: 1:30AM to bathroom to urinate
3:30AM same
7:30AM “ “½ percocet
9:00AM a small porridge. ½ ensure.
Noon visiting nurse: -Took all meds ½ percocet had a tub bath and did Very well. Took ensure and 1 candy wgt 90 lbs today.
5:15PM Dot: Balanced Check book. Paid bills.
1/3/96 Bob: 1:00AM To Bathroom urinate
4:10 “ “
7:30 “ and BM
9:15 Moderate serving of oatmeal porridge. ½ tangerine, and ½ small piece of toast, coffee, very little of blended banana left over from 10 PM, refused pineapple juice.
10:15 Di ½ ensure plus all her pills. Doesn’t want to get dressed yet.
Watching TV
11:45 All dressed. Finished ensure. Ready to party!
It is Melba’s 88th Birthday, and a celebration is in order!
5:30 Up for dinner. Lamb chops and cheese cake. She even got herself a drink. Liked the idea better than the taste.
7:30 Tired. Off to bed.
8:15 Bob Church Choir singing Happy Birthday. To bedroom.
10:30 gave ½ percocet and Tylenol
11/4/96 Bob: 3:20 AM bedpan with about 120 cc. Gave 1 ensure plus ice cream but about1/3 taken.
9:00 AM She ate a tangerine, half cup coffee, and less than half of a moderate serving of oat meal porridge. Gave ½ percocet.
Noon visiting nurse: Gave all meds except for lasix + kcl- had a bath + shampoo-finished ensure had second can of ensure and 1/4 banana c ice cream + 1 cup of hot choc made with milk-walked about the house-getting around much better.
4:30 PM Bob: Gave ensure and ice cream
7:15 Half a lamb chop and a good serving of scalloped potatoes
8:15 Sophie: Percocet and one tylenol est relief. Has had a good day.
Seems to be in a good mood. Up to bathroom. Wgt 90 lb in night shirt
1/5/96 Bob: 3:40AM went to bathroom for urine. Gave ½ sustacal plus ice cream of which half was taken.
8:00 breakfast, one shredded wheat, toast.
10:00 Jen: Changed bed did laundry. Pill container needs filling.
10:30 had pills, finished can of super insure, all washed and dressed for day
1:00PM Bob: Small serving clam chowder
3:40 PM half sustocal and ice cream
7:30 PM ate most of one small lamb chop and 1 piece toast
10:30 PM Half sustocal + icecream, drank her down.
1/6/96: Bob: 4:00 AM Had Sooster Booster (Sustacal) and ice cream. To bathroom7:30 AM to bathroom
8:30 AM Small oatmeal, one piece of toast, orange juice and ½ coffee
9:30 Jen: Did laundry, cleaned kitchen, bathroom. Melba back in bed.\ watching TV. Called Sophie about filling pill container. Melba’s not ready to get dressed yet.
10:30 AM Visiting nurse: Gave Melba her medications-set up 7 day medication box with lasix + KCl every other day. No lasix or KCI today. KCl almost finished-will have to reorder if she continues on this-had a tub bath +shampoo drank 1 can of sustical-does not have much energy today-wish she would eat more.
1/7/96 8:00 AM Bob: all AM meds 1 tylenol + percocet ½ tab before leaving off to church! 1 sustacal and shredded wheat for breakfast Did very well at church- Took her walker and she walked in c walker then up to Fellowship Room. She ate a donut at church.
At church: As adults, perhaps partly as a reaction to childhood experience, neither Bob nor Melba have been churchgoers. Now, however, a Lutheran church is across the street, and they have been attending there for several years. To the amazement of the worshipers, Bob mows the one acre lawn with his old push mower. Fellow church members are actively concerned and supportive of them in their old age. Now, within two months of her hip fracture, and shortly after the church choir sang for Melba for her 89 the birthday, she is able and motivated to attend the service.
9:30 PM Sophie: up at table. Good mood. Wt 92 lbs- reading Reader’s Digest to us. Has her humor back. Asked for water when dad was giving us a medical report from Reader’s Digest.
1/8/96 Bob: : 1:00AM up to bathroom. Gave ½ sooster booster.
3:40 AM Same, little taken.
7:40 AM took a bit more of S B, also ½ percocet.
10:30 AM Di: Clean up things changed bed did laundry gave Melba her pills with can of juice. She drank it all.
4:30 PM Di: Dressed up and off to have blood test. Melba and Bob have a good system for stairs, using walker. Fixed dinner-fish + string beans +bread in bread maker.
7:00 PM Bob: Yes we got blood test and a report to Dr H is promised tomorrow morning in time for our appointment at 1:30. Di had prepared a tasty dinner, much enjoyed.
1/9/96 Visiting nurse: All medications taken. Had a tub bath – For the first time I did not have to get in the tub too! Had 2 vicodin then off to lunch in town. She ate a half a cup of soup and some pasta- Then to Dr. H- wt 95 lbs! He is very pleased with her progress-Yes we may continue giving percocet- he ordered more. Bob will pick them up.
1. Yes we can discontinue lasix and KCl- watch for swollen ankles etc.
2. He ordered an Xray of pelvis + we went to N W Radiologists + had that done.
4. He wants her to try pool therapy- I will phone for an appointment- I phoned they can’t start until 1/23 at 2-4 PM-Home to bed- I gave her ½ percocet + 1 tylenol + a glass of juice + a glass of sustical- It’s been a long day but she did well I took lasix + K Cl out of medication box.
1/10/96 Bob: 1:15 AM Up to urinate. Gave 1/2 sustical and ice cream
6:00 AM ” “ “ Didn’t want sustical
8:10 AM Up for breakfast in breakfast room. Small serving of porridge and
a slice of toast.
10:00 AM Di: Got things wiped down swept up laundry done. Melba watching TV. Bob’s outside somewhere. Pills were gone so Dr. Bob must have already gave them to Melba. I made up some imitation jello (with unflavored gelatin) in fridge with blackberrys and cherries in it. Hope no one gets sick on it. See you Friday.
5:10-7:30 PM –Dot: Watched TV, read magazines. Ate turkey wi pears Pretty spunky today. Hooray, Hip Hip! Good work by lots of loving, kind helpers and dad and S.
8:00PM Bob: small gelatine & part of banana for dessert.
10:00 PM Sophie: Reading at D. table- Looks great! No swelling of feet or ankles. No SOB. Pain meds as HS. Dr. H sent word that the X Ray shows that the break is healing well.
As Melba recovers she wants, to reassume her duties as homemaker, those Bob has taken on. His entries end, and the former pattern of caregiver notes reappear.
Epilogue
Epilogue, Melba Notebooks
October 21st 2001 In a rest home in England, Bob’s younger sister, Elizabeth dies. Bob and Elizabeth wrote regularly for much of their lives. But during the past few years letters and phone calls have been infrequent. E ends her days in a nursing home, confined there at her own request after a bad fall. Bob continues, gradually losing strength, confined to his bed and chair, only his appetite remains, and his lean old frame now carries a little fat. He is there and yet not there at all.
Jan 3 2002 This is… would be… Melba’s birthday, her 94th. Bob’s 94th a couple of months away.. Bob has become increasingly somnolent. He is anemic, though his physician does not know why, and feels, in concurrence with Bob’s children, that under the circumstances, it would be cruel to investigate fully. The long year climbs down the days with agonizing deliberation. The rest home folk are asked to allow Bob to die peacefully, if possible.
Sept 10, 2002 Bob begins to have great difficulty breathing, with periods of apnea, where he seems to struggle but not take a breath. The nursing home calls Dot, who suggests that if he seems to be suffering they should call 911. He has virtually no blood pressure and is unconscious, but is hospitalized with sepsis, probably originating with a urinary infection. He is treated aggressively and resuscitated. In less than a week he is ready to be discharged; the physicians and hospital can justify no more charges or tests, and agree that no further in hospital treatment is warranted. The rest home will take bob when a bed is available. He is comatose, and is meanwhile moved to a skilled nursing facility.
Sept 14, 2002 At the ECF Bob is unconscious but breathing well, takes fluids, and eats when fed. The record of his recent hospitalization does not apparently make clear that he is has had renal insufficiency, in his case an inability to pass his urine due to obstruction from the old operation for incontinence; he quickly redevelops uremia. This time no one in the nursing home is aware of the cause. This time, for the next several days and nights, Sophie, Dot, Wi, and Ni with his Irish setter, Gus, take turns being with him at all times. No one calls 911.
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“He’s the only newborn in here. He’s not dong well. His thin, pallid umbilical cord is attached to a plastic bag of what looks like water. His mother, I suppose it’s his mother, comes in to change diapers, and wash him sometimes. But she doesn’t pick him up to play with him, feed him, or hold him, or sing to him, or even say much. His father too sometimes. In fact, different people come and go, and I couldn’t say which is his mother or father. He’s all covered up and doesn’t move about or even cry. He complains when one of his dads, or whatever they are, stretches out his legs and arms for him. Because he just doesn’t ever move by himself. No one is here now.
“I never see him nurse or use a bottle. People put things in the bottle connected to- I suppose the cord. They write on some paper, write things all the time. Must be new government “regs” for nurseries.
“Sometimes he just stops breathing, for a long time; then breathes deep and fast, like he was trying to catch up. And I can tell you, it’s distressing to hear an infant breathe that way! I feel like shaking him. I would if I could. I feel sorry for him; but hope at his age he doesn’t feel much, suffer much.
“I can’t see why I must watch all this. It’s like I’m invisible. What am I doing here, useless, trapped? I don’t have the time for this. I can’t miss my United flight to – where? I forget. Oh- to visit my sister in England. Since her husband died from prostate cancer she’s had such a bad time; alone, then the broken hip, now in that nursing home. I have so much to do; so much to finish. The underground propane storage project for New York and New Jersey. If only I could get the damn bureaucracy to move I love the my even work even though it hasn’t come to anything yet.
“I feel tied, like Gulliver. Millions of tiny threads hold me back. I need to move, stretch, but I can’t. Activity has been an elixir, a drug, for me ever since track. Ever since… well, my 880 and mile times were best in 1929 We stepped out of college and BAM! Right into the Depression. But it wasn’t all bad. How lucky I am to have found work at Noranda, even if we lived on beans. Well, most everybody did, but it was good.
“I think the best party we ever had was when we bought the chair. We had no furniture, just a mattress, a card table, and some sturdy Ajax powder boxes. For Christmas we bought a big, ugly, green, used easy chair and invited everyone in to celebrate. They had to draw straws to determine the order of sitting rights. How gloriously insane we were, how extraordinary and exciting little things were then.
“I loved the cold winters, the high pitched timbre of sound below zero, the explosive Spring breakup of the frozen land and river and lake, and the lush summers, all the birched and piney wet woods, and even the mosquitoed humid midnights when the sky was still faintly suffused with the day. Canada was good to us. Life was, for that matter. Who would have thought then, that the virtual Farm would become Stanford University? Who could believe that our 1500 gram newborn Sophie could grow so as to be such a pure joy? If Melba were still alive she would be on the phone right now talking with her. Melba. The loyal lady I stole from her Durham Ranch. I was only a man before we met. Then I became hu-man. Whole. Very imperfect, yes. But were not for her, I’m not sure who I would be.
“That spastic electric wall clock says 5 a.m. I must have dozed off. But I’m still overlooking the Nursery! Why couldn’t I wake up at home, or at work, most anywhere but here! There is that miserable looking newborn; just the same. I’ve almost given up hope that all this is only a bad dream. I had a dream once where I was on an island, and couldn’t get off. So I dreamed that I woke up. I did! And was off the island. Why can I not do that again now?
“But wait! There is Sophie, at the door. She doesn’t t see me either! Sophie! I’m here!…. Nothing! How changed she is, how old she seems. Can it be she? She’s at the infant’s side saying something to him. I’d try call out again but there’s no sound to my voice. Now she is singing softly. I can’t hear clearly, yet I can feel the pulse of long silent rhythm, the lilt of long lost rhyme; a ranchero! Yes! I have an old recording of that somewhere; where?
Mira Bartola! Hay te dejo esos dos pesos.
Pagas la Renta, el teléfono y la luz.
I must find it. But I hear it clearly now, the rhyme, rhythm, a deep simple joy. It is enough; the Lilliputian threads which bind me fall away, and I silently float up and out of the nursery.”
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October 26, 2002, After a Memorial Service we gather for dinner celebrating Melba and Bob.Bob’s ashes are to be divided between the Chico Gravesite where Melba awaits, the spot where he stopped short of his ascent of Mount Baker, two years before.
June 25, 2003. At the headstone in the Chico cemetery there is no grave. The marble carries both names, and is now completed by adding the year 2002 after Bob’s. It is their wedding anniversary. At last, Melba has her husband of almost 75 years where she has always wanted him, at her side in her beloved Butte County homeland. A handful of Bob is on a high ridge approach to the glaciers of Mt Baker, and another by the shore of his beloved Pacific Ocean. I expect Melba smiles when we also place a small handful of his ashes next to the headstone of a young woman buried in a grave nearby.
THE ELECTRIC TRAIN
Chapter XXIV, The Melba Notebooks
March 1, 2001 begins Bob’s 94th year. Just after his birthday Bob is placed in a nursing home in the countryside. It is an idyllic setting, a one story home surrounded by springtime greenery and blossoms. There are only 5 fellow residents there, and three caretakers. He has his own spacious room, across the hallway from a bathroom. He is surrounded by photographs, and familiar furniture. His favorite music is at hand, and often played, although the volume is limited, so he doesn’t always hear, and still has not mastered the use of his various hearing aids.
He no longer tends to get lost as he cannot leave the rest home both because he is closely cared for, and because he can’t walk more than half a block without exhaustion. He does not seem agitated, upset about his condition, or his confusion, as he had been during the first few years it was developing.
The residents eat family style at a long table very similar to Bob and Melba’s. He eats exceptionally well and has gained some weight. Meals are long and Bob ‘reads’ at the table afterward as he has long done. Adjacent to the dining room is a large family room with six recliner chairs, beside each a TV table, set with reading material, water, snacks. The chairs face a large screen TV. Bob sleep-watches TV for many hours each day.
He sometimes seems to recognize visitors, but it is not clear whether that recognition is real, or feigned; it may be that he knows he should know but doesn’t, and doesn’t want you to know he doesn’t know. To any comment or question he still responds brightly in iterations of “yes” and “thank you”.
His treasured and worn old clothing has been replaced with more decent items, and he wears them contentedly. He continues to use the sink to void.
.
Referring to a woman in a nearby room, he commented recently to Sophie:
“They are taking good care of your mother here.” At first there was some disturbance when he tried to slip into her bed at night, but she recovers and gradually he desists. He still likes his goodnight kiss.
As a child, one of Bob’s greatest unfulfilled wishes was to have a train. It never happens until 2001 in his 94th year. Sophie buys him an electric train set at Goodwill, mounts it on a 3 x 6 plywood board, complete with bridges, lakes, a farm, trees, a station, houses ,a town, streets, stores, people , cars and signals. It is stored beneath his bed, and when she visits, she takes it out, placing it on the bed. Bob sits in his chair, quiet beneath his bright afghan, and watches intently as the train moves round and round, smiling vaguely, but making no comment unless asked something; then he brightly smiles and responds as always:
“Yes!” or “Thank You!!” Looking away as if very busy, he returns to a minute inspection of his long awaited moving train.
Letting Go
Chapter XXIII Letting Go
During the day Melba is often asleep. She has episodes of alertness, and when communicative is much more aware than Bob, able to discuss her past and future. Her old sense of humor boils over in unpredictable but astute comments. She is unafraid of the future, whatever that will be, and knows that it is upon her.
Melba leaves Bob emotionally. He may not sense this but he misses her physical presence. When he awakens in his bed and finds Melba is not with him it’s distressing. He goes to the dining room, buck naked as always, and finds her in a hospital bed between her old piano and the dining table. The light is on, but Bob doesn’t seem to notice this unconscionable waste of electricity now. The hospital bed is too narrow for him to get into it. Melba cannot get up and move to their bed. He is lonely. Maybe that is why he so often sits at the dining room table and nods away the night.
6 13 00 Sophie: Vj: give: 1 tsp of water every 5 min
Ice cream & banana shake
No solids until afternoon
OK to give the usual pills.
If Melba vomits =, use ½ suppository. It worked great last night.
I like the idea of recording intake. Let’s indicate what meds she had also- so the next person knows for sure.
Ja called. We all agree that our main concern is that Mom is comfortable; not in pain. So we need to watch for pain— Ja says to put patch on chest area where skin is thin and access is good, with usually less moisture so it will stick better.
About fluids: If she wants it – great, if she doesn’t want it great. You have all been so kind and wonderful. Thanks so very much. Ja is going to come for a while to help out. You are terrific people.
PS it still smells like a skunk on back porch. (Use) Moving pain chart from facial expression: 0 = low 10 = high
11:00 PM Transfer from chair to bed. P(ain) L(evel) 5 No vomiting.
6 14 00 8 AM Vj: Bob sitting up dressed. D was here talk to her about taking care of Melba washed in bed and changed her gown. Give breakfast to Bob cereal and scrambled eggs. Melba: 8 Am to 4 PM
7 up 300 cc
I B 250 cc
Water 50 cc
Cream of chicken soup 6 spoons
Cottage cheese 3 tablespoon
½ banana with 3 tsp ice cream.
No vomiting digested good
Melba wants to go to the bathroom S was here took her to the bathroom bring her back she wants to sit on her chair for a while put her back to bed when she feel tired. She had a small BM clean and put cream on her back still some red. S took Bob to the dentist. Ja called and talk to S. Give Bob his lunch he seems like worried about Melba give sips of water all day. Melba want to sit on the chair to transfer her on the chair went to get mail she was ready to go back to bed so did the same way she like it seems having some pain. Li called. Leaving at 4 PM.
3:30 PM Lu: Melba up. In a great mood today! Much better!
5:30 Dot: To store – for frozen dinners, juice etc. Paid bills & visited See you soon Call me if anything is needed.
Ja coming at 5:15 Thursday.
Urinary infection? (Odor & color.)
4 PM Lu: Melba in very good mood today! Mood changed @ about 8 PM. Probably tired. Gave her some codiene syrup @ 8:30 PM. Had a very small loose BM. Cleaned up (Shi & I) and the A& D ointment to buttox. Melba slept well last noc. Bob was up 2 x to check on her. 2:30 & 4. Then Bob got up at 6 AM. Melba up at 6 also. Melba is dry. I repositioned her 2 x, I didn’t want to disturb her, so that she would get some sleep. She needed it. Got Bob some H2O, and spooning Melba 7 up & gatorade this AM. 7:30 gave Melba some codiene syrup so that when Vj gets here we can get her cleaned up ( no wet bed yet.)
Last noc and this AM 200 cc 7 up
300 cc
6 15 00 7:30 AM Vj: Bob up sitting talking to Melba talk to Lu for a while. Breakfast to Bob cereal a scrambled eggs a cup of hot coffee very happy Melba wants to go to the bathroom took her to the bathroom brush teeth give some water to drink washed her and put some lotion changed her gown and changed her bed looks tired clean the floor, did laundry put antifungal cream on her back. A friend stopped by to say hi to Bob a Melba they both happy to see him.
I/O chart: banana 1
Ice cream 2 ½ tsp noon 1 tsp
I B 300 cc
7 up 250 cc
gatorade 250 cc
Changed Melba again at 2 PM she had a small BM changed her gown Melba has small BM in the morning when she went to the bathroom keep giving her fluids. Give lunch to Bob. Give Bob his meds and Melba hers except asprin.
3 PM Lu Melba looks very tired. Bob asleep @ table 4:30 checked Melba, she was wet, changed & cleaned her up, put new pad under her. Melba in & out of sleep. Pumped the fluids.
PM Ja: Questions for Dr H:
1. Plan for terminal care-
Can we have MS 10 mg/ml vials c syringes to be used when needed, as when vomining.
2. OK to stop prozac for Melba (on fentanyl patches)?
6:15 Sophie: Vj, don’t give Mom any meds until she gets ready for the morning. We want to see how the patch covers the pain in & of itself.
WE ARE MISSING A PATCH. HAS ANYONE AN IDEA AS TO WHERE IT WENT?
6 16 00 0630 Ja: Both Bob and Melba slept well- Dad up a couple of times. Mom laid on her L side all night though, never moved by herself. The sun sure comes up early here! Vj arrived and began to get everybody up. First Mom- who was quite weak and confused- gradually became more & more alert. She took some breakfast- mostly juice/ GATO, but vomited the same brownish liquids ( not “coffee ground” ) – But by 12 we got her up into a chair- and she’s at the table paging through Sunset and looking out the window. She hates to have her hip moved despite the fentanyl. Also a little itching, which may be from fentanyl, or tylenol codiene. She had 2 or 3 doses yesterday.
I spoke c Dr. H and he sent out a Rx for MSO4 injectable, and I have it in the refrigerator: If needed for pain, or agitation of hypoxia/vagal nausea, can use 2 mg or 4 mg- it should take effect within 10- 15 min. Can be repeated if needed in about 20 min. However, avoid overdose, as it can cause respiratory depression- like fentanyl or any narcotic. Be sure to record its use (see log at back of this book!)
7 AM Vj: Bob still in bed all his top bedding on floor. Ja up and was taking care of Mom. Melba slept off a on. Give her sips of water Melba thro up 3 times brown color. She seems very weak but alert. Washed her changed her bed a gown put some powder.
Water 300
Gatorade 200
Yogurt ¾ cup
Ice cream 2 tsf
Banana ½
3 PM Ja: I called Dr’s office & left a message- asking if he might prescribe a pneumatic mattress. I understand that if he does so the “option care” people will deliver it & set it up. If we don’t initiate this kind of thing I’m afraid Mom will develop pressure ulcers very quickly (now that she’s in bed most of the time and sedated.)
4PM Vj: S & Ja took Melba out in the sun she enjoyed it almost 1 hr, bring her in seems tired made her lye on her day bed. Melba didn’t vomitted after 11:30 AM she digested some of food still looks very weak.
4 PM Shi: Ja, D were here everything seems OK Melba weaker but still cheerful. Gave juice & water & potatoe did well. Gave 1tst codeine at 6:00.
7:00 Melba having pain when Lu & I were cleaning up. Patch: Vj put new one on today which wasn’t to be changed.
8PM Ja: Melba agitated, appears to be over-medicated: either side effect or over medication from doubling fentanyl with codeine at same time. One patch is removed. Placed on L side for sleeping, but still tight, tremulous, clutching side rails, frightened looking, uncommunicative & confused.
Nurse called from Hospice. She will call again and stop by this weekend if she can, otherwise on Monday. Hospice # — —- Options care # — —-
6 17 00 8 AM Shi: Bob sleeping Melba awake looks good this morning. Gave her some breakfast, poached egg, cottage cheese, & orange ate good, looks better. Will attempt to give shower. Shower done and did well. Ja has her outside now in sun. laundry done Melba ate ¼ egg sand made custard 7 potatoe salad.
PM Ja Hooray- the Pagasus Mattress was delivered today. I think it will be a big improvement. Mom was quite alert today and up in wheelchair, eating OK. Dad slept in bed til noon but then was up most of the rest of the day
6 18 00 0630 Ja: Mom slept well but awoke early, shaky, frightened, agitated. Given 2 mg MS and changed. Turned on L side. Heat turned up to 70 from 65 last night. With the warmth, dad got up and came to read (Hey! With shorts on!), and Mom relaxed- though the MS probably helped, it seemed like the heat both woke up Dad and brought him out of hibernation, and soothed Mom.
0830 Shi here. Shi said to Dad who was only in his shorts still,
“You’re not dressed!” and he responded with precision-
“Not very well, anyway!” Now Dad dressed & fed and mom’s eating listening to a piano concerto on classical FM.
Shi says someone from hospice stopped yesterday and said Mom is not eligible. They have a laundry list of criteria, and apparently she isn’t terminal enough- because she can be gotten up to a chair, and can speak more than 2 words or some such. Down with the Doctors; up with the book-keepers. I suppose there is good reason behind such things, but it seems like she’s in her last 6 month of life to me, and in her condition, the request is reasonable. Anyway the programmed mattress is great. As it is we are probably better off without hospice anyway, plenty of experienced people here.
This is the first of two episodes when hospice evaluates Melba. In both cases they find her not yet ready for hospice. That comment may be a bit unfair because the nurse is out matched. Immediately before she comes, Sophie does Melba’s hair, paints her nails, and makes up her face so her color is good. When the hospice nurse arrives Melba is responsive though not alert. She is hydrated, and her pain is in control due to the frequent small doses of morphine, as well as the fentanyl patches. The second hospice evaluation three months from now leads to the same conclusion four hours before Melba dies.
No family can go through a period like this and agree totally at all times. While Melba has made clear, and we all agree, that only comfort care is acceptable, Ja and Sophie are both medically sophisticated; they have seen hospice be very effective, but also seen over-under- and mis- treatment; so would prefer avoiding that risk. For Dot, by comparison, to witness death and dying is an entirely different matter. She wants hospice there as much as possible. Her husband is in a sensitive spot, as a judge, on the local Board of Directors of the hospital. She is very aware of political correctness in medical and legal arenas. She is right that many would disapprove if they could see what goes on here: The risks of falling; of fire; of germs; of implied abuse or neglect; of life? Well, more likely of death. The proper citizen is afraid of laws, courts, germs, abuse, neglect, and insensitivity; of most all that Bob and Melba are or have been.
6 19 00 8 AM Shi: Bob up Melba awake. Also Ja got breakfast. Melba had oatmeal & cottage cheese & juice. Got her washed and dressed bed changed. Looks a little better today. D will be over later for B Q for father’s day.
Ja 3 PM Reviewed long term plans with Shi. Also gave Mom another MS so we can use a glycerin suppository to produce results (none x 3 days) Also D has made up some Prune Delight. Ooops!
Dad had some pickled herring and some raw oysters for Father’s Day and D brought some new shirts and pants. We plan a Salmon after a Father’s Day gathering- J, B, Ni, D- as well as Shi and Ch. Melba seemed agitated and distressed again. (We had given her a glycerin suppository in the afternoon c modest soft stool result) After cleaning and repositioning I gave her another 4 mg MS. Bob to bed. A little later than usual. I think he is aware that Melba is not well, and may die. But forgets.
6 19 00 4 AM: Ja: Mom resting quietly still, on L side. As usual she doesn’t move about at night; none of the rigidity or shakiness present last evening, skin warm, c good perfusion. Sorry, Gotta go, but you all are in as good shape as you can be.
5:45 AM Lu: Bob up & reading. Melba in & out of sleep! Melba wet, & having a very small BM . Cleaned up. Had her drink some H2O, gave bob a glass of cranberry juice. BR floor wetted on, cleaned BR. Melba very flemmy in mouth. Melba drank a whole glass of H2O. Shi here a 6:50, we then changed bedding and washed her up & put lotion over entire body. Have a good day.
8:30 Dot: here for short hello. Mom is talking about church today.
12 AM Shi: Ja called to see how things are, relieved to hear she seems better. Will call later.
6 PM Dot: Here for visit. Mom slightly feverish- but all is under control.
9:30 PM Shi: Melba sleeping nicely left radio on low seems to sooth her.
6 20 00 2 AM Shi: Melba sleeping OK
6:30 AM Melba awake. Warmed house gave Melba shower, changed bed seems better today.
7:45 AM Lu: Melba seems to be doing pretty good this morning. So far, has had a glass and ½ of white grape juice. Meds given, now eating oatmeal. About 10 tsp. 2 tbs prune puree. Changed her @ 8:00 she was wet. Lots of pain while cleaning & changing. 1 glass H2O. she does not seem to have that deadly grip this AM, while holding her had. She seems much more relaxed, today.
8:20 AM Bob is still sleeping. Melba is talking quite a bit this AM. Some makes sense some does not. More juice and H2O. Bob got up went to the BR & went back to bed ( 8 :40) read quotes from out of the Hope, Love & Faith book to Melba this AM. She seems kinda sleepy, eyes opening & shutting (8:50) gong to let her rest for a bit. (I think I talk to much!) Melba ate 3 tsp more of oatmeal. Melba trying to nap. I think I’m bugging her, by asking does she want this, that etc. I’ll go read for ½ hr so that if she does want to rest a little she can. Moved her off her side R onto the back @ 9:15.
Checked @ 9:45 still dry. Brushed teeth & washed Melba’s face, and eyes out. Eyes seem to be pussing & tearing. Mouth very flemmy. Melba has been drinking juice, H2O, & V-8. Ate 3 tsps of cottage cheese.
9:30 AM Dot: Here for a visit. Mom looks good, but is quiet today, eating & drinking well. Lu here for 48 hours starting today. She is doing great. Cleaned out file & small dresser- chest.
PM Lu: Lo brought Dot & I a mocha milkshake, and Melba drank most of D’s.! She loves it! Up in her chair @ 4 PM. Reading & finishing her shake. Seems very happy! I think Lo makes her day! 4:46 asked Melba if she’d like to lay down, no, she doesn’t, that’s great! Wet at 5ish . Washed & changed. Ate at 5:20. Melba got her teeth brushed & washed up @ 6:30 Bed changed and in bed at 6:55 she had sm BM still in a good mood!
9 PM: Bob asked if Melba could come to bed w him. He said he “misses her!” I explained the mattress situation, why she hasn’t come to bed. Melba in & out of sleep. Still dry @ this point. 10:05 Melba slept a little bit, but is up now. She’s dry, but she doesn’t want me to move her. I’m a bit hesitant to give her syrup @ this point, being that it might stimulate her , and keep her up. I’ll check on her again @ 11:00.
Maybe a low dose sleeping agent @ noc? I don’t think she’s gotten much sleep lately. She sleeps a little but not much. She should be tired, she was up all day today. Even in her chair a couple of hours. Bob up a @ midnoc , BR. Didn’t go out to Melba. Went back to bed. Melba sleeping finally… did not want to disturb her, will check again soon.
6 21 00 Bob had a restless noc up & down 2 & 3:30 , to use the BR ( he had a lg- BM) 4:30 checked on Melba dry, turn back onto back off R side. 7:45 Melba had a Med BM (for her anyway), cleaned up & going to start intaking fluids etc… Bob had scrambled eggs & toast. HC & juice. Got Melba meds down w/ the prune juice.
10:00 AM Dot: Cleaned up laundry room and pantry cupboard. I moved some things, so you may need to look around. All rejects are in garage if you miss them. Left at 4:30. Mom & Dad seem much better. Met X ( being considered as possible added caregiver) So nice of her to come out Melba did fine with her- sweet lady!
PM Lu: Does D ever slow down? Melba in good mood today, had 2 med BM. I’ve gotten a lot of fluids in her. She seems to be improving gd! Melba napping, Bob napping. (5:03) PM Melba sat up w/ bob in chair for a couple of hours today, J came over to visit, Melba enjoyed her. Lo forgot pizza so Bob & I are going to pick one up. He wanted to go w me. Melba in chair for dinner. Melba got really quiet after dinner. I put her (pneumatic) mattress in (their old, now Bob’s, bedroom) on Melba’s side of the old double bed!! We’ll try it & see how it goes. The mattress takes a lot of the bed, so it may not work, I’ll find out to noc. ( we can’t knock it, until we try it!)
Moving the pneumatic mattress to one side of Bob and Melba’s old bed is not very likely to work welll. Yet to actually try it is just one more thing that is possible in a home, and never could be tried in a hospital. It is impractical but is a genuine and thoughtful attempt to respond to a request. It doesn’t work for long, but that is not the point!
Looks like Bob is using the toilet, now that we’ve removed the other seat. Melba didn’t want to go to bed @ 7, so we went to bed @ 8. I put her wheel chair right in front of laundry room sink, stood her up we washed upper body first (she’s one tough cookie) she stood there while I washed her up. She had another med BM. We don’t have to worry about any bowel blockage. Bob’s a happy camper to noc, Melba is in bed, real bed! (with Bob again) Melba sure perked up as I wheeled her in there and put her to bed.
9 PM Melba sleeping soundly
10:03 PM Melba turned herself over on L side ( if you can believe that) sleeping wonderfully. I have not given her any pain med. She’s got her patch on. That seems to be doing the trick. I think she’ll sleep better in her own room! Bob going to bed now 10:30. He seems so happy that Melba is in bed. (He was wondering about what we all write about in this note book, so I let him read my last 48 hours. He got a kick out of it, I believe. And this will be the test to noc, because the numatic mattress is somewhat lg in that bed, I explained that to him. Reminded him about brushing teeth 2 x day. Gave him those floss pick deals. Oooops, he found the sink again to noc. 11:07 Melba making her ” I’m in pain” sounds 4 x. went in there, she’s asleep. Maybe a bad dream? I sure hope this works out for both of them. The mattress is a bit big. I’m going to keep my ears open to noc, and make sure all is well! Bob is restless again. Melba doing great.
6 22 00 7:30 AM Shi: D was here cleaned a little in the office….
Bob up numerous times last night, re Melba; about 2:00 sleeping well, cough a little, snored a lot.
10:30 AM Dot: Here for visit & last trip to dump. Melba up 9 AM washed. Dressed breakfast oatmeal, juice, thru up flem. Better now. Resting listening to music up in chair reading had a good lunch. A little confused. She wanted to go home told her this was her home I was just here helping.
Shi: PM. Bob finally went to bed 3 AM after many times of telling him. Have a good weekend.
6 24 00 7 AM Lu. Put mattress back in living room for the day. Melba said she “resents me being here.” Asking where their car is.
10:05 Melba wheeling herself to BR put her on toilet. Off toilet and sitting up w Bob. Still talking about ‘going home.’
5 PM talking to Shi, going to get dinner ready really soon. Ja called last noc and talked w/ Melba & Bob @ 8 ish
6 25 00 AM 10:00 Lu: Friends stopped by to say “hello” to Melba & went in to bedroom but Melba still asleep.
HAPPY 69TH ANNIVERSARY!! The 70th year of this marriage begins today!!!
3 PM Melba still in bed… Melba wanted up at 6: 50 PM. (Now ) she’s out talking to Bob.
10:30 PM Lo & I went to store after putting Melba down. Bob asked if we should get something from the store so, I picked him up a candy bar & beer. And a scratch lottery ticket (crossword) which he enjoyed, and the Times, since he was out of reading material. We all sat ( Lo Bob and I) and scratched out tickets, no winners, but it was fun. Bob when to bed at 12:45 to noc.
2 AM Bob still sleeping so I’m going to try & sleep.
6 26 00 PM Dot: Here for visit- all is good. Mom is more alert & with it. Dad still asleep at table.
6 27 00 8:00 AM Shi: Bob has worn a jacket all day. Tried to get him in a shirt but no go… D visited for a while & brought groceries.
6 28 00 3:30 PM LU: Lo came with the famous Melba Mocha Milkshake. She thinks we were visiting. (She still does want to go ‘home’)
4:15 Lo going to get part for door (screw is all) he got it open, that’s a plus. Dr H called back will fax for a chair pillow. Thank you Dr H. Bob up & down periodically throughout the noc.
6 29 00 AM Shi: What a night! Bob was up so many times sounds really bad coughing & wheezing. 6:45 now up & dressed (well sort of) Melba very restless to. But sleeping now.
8 AM Lu: Melba sleeping again will get her up in chair when she awakes. I have to get her on the air mattress again she’s been w/out for 2 days.
1:08 PM: finally convinced Melba to get up. Brought her out to kitchen fed her soup, ½ grilled cheese strawberries H2O juice. Brought mattress in living room, put on day bed. Melba very weak today! Neck is sore from lying down so much. Bob does have edema (which is water retention) his is probably from poor circulation. Put recliner in living room so he could put his feet up.
7 2 00 AM Lu: Melba being silly. Still she’s in a great mood. But still wants to go home ‘xxxx Queen Ave, Minneapolis.’
Melba has always wanted to go home, either to the Ranch in Durham, California or to those wonderful years when children grew up around her table in Minneapolis, among those never again friendships that grow up with children. On Queen Avenue is the 50 year old home home they lived in for 30 years. Now however, her repeated reference to going home is prescient. It won’t be long.
Bob is now in the recliner almost all the time. He breathes better there and his feet swell less. His coughing is due to right heart failure, chiefly consequent to chronic lung disease, or ‘miner’s lung’. He has apparently always smoked some, but I have NEVER seen him smoke since my early childhood in the Philippines when he used a pipe and ‘Prince Albert’. Melba too, smoked until about1995, but little.
3: 50 Bob really having hard time breathing when exerting himself. Getting up & down. Bob seems quite happy in his recliner! Bob’s temp 97.9.
… Bob has an 11:00 appointment w Dr. today. Figure out what’s going on w/ his breathing.
Dot: Dr. didn’t hear problems in chest, but took Xray 7 noted swollen ankles and weight increase. 191 # (up from 155!) Xray shows enlarged heart, but no fluid concern. Prescribed diuretic- return 2:30 next Monday
7 4 00 AM Shi: got instructions from Lu as to new meds & all. Bob had five glasses of water. ( So much for the diuretic/ water pills!)
9 PM Bob went to bed on his own. Up and down every ½ hr. Wheezing & coughing 2 AM. Put in recliner & called Dot she said if not better in 1 hr give a shot of morphine at 3 AM (talked w Ja, 2 or 4 mg) . gave shot. By 4 he was sleeping good.
7 5 00 8:30 AM Bob still in chair starting to cough a little but seems comfortable. Melba up 9 AM. Bob still coughing. D will be here at 3:30 to take Bob to doctor.
5PM Dot: To Dr at 4 PM. No sound of pneumonia- only lost ½ pound. Took blood for testing & ordered increase of diuretic. Give 2 tablets: 1 at AM and 1 early or mid afternoon.
7 6 00 12:30 AM Shi: Bob fell getting up bruised his arm that I know of. Went to his bed only up 3 times.
3:30 AM Melba yelling at Bob almost laying on her trying to get back in bed. Really hard for him in such a small space. Moved Melba back to dining room hospital bed got dry things on her and into the bed smiled and said thank you. I think this is where she should sleep.
Lu’s experiment with the pneumatic mattress on the double bed has finally failed. Each of the care-giver’s personality is different as revealed clearly in this record. Lu’s father is an M.D… she is very familiar with medications and uses them freely, in the way that professionals often do. Lu is the most empathetic and communicative of the ‘handmaidens’ where Bob is concerned; they all see immediately that their chief concern is to help Melba, not Bob; and to protect her from his excesses. But Lu, by contrast is also tolerant and affectionate with Bob; Maybe since he is no longer Bob, that makes it easy.
6:30 AM everyone sleeping now.
8 AM Lu: Bob still does sound SOB but his feet look 100 % better.
PM Dot: Shi have you seen the white cotton blankets? We couldn’t find them.
7 7 00 Lu: Three and ½ solid pages of careful print-writing; the way younger generations write now; no cursive. It is mostly about Bob’s gradual improvement in breathing, his wish to sleep in recliner, and conjectures about same! Now that Lu has become the principle caregiver, she assumes a clinical command of the notebooks. The notes are detailed and lengthy. So much so that I edit them, or maybe euthanize them unmercifully.
7 10 00 8 AM Lu: S came by to visit.
12:40 Sophie: back to hang mirror & bring mail. Dr checked Melba at 2:30. S mowed the lawn today. She’s good!
Dot: cell phone # until August – — —-
7 11 00 6 AM Lu: Holy Nightingale! 5 pages of print writing here; mainly a commentary on the day.
7 14 00 7 AM Lu: Bob a very restless nite talking in sleep and thrashing in bed. Melba slept well. Bob has a cough. Sophie was by to visit last nite.
7 16 00 6 AM Lu: Bob & Melba both sleeping in LR. Bob on recliner. 7 A Melba awake, giving her H2O . Bob wakes and says” Good Morning!” & goes back to sleep. Bob sleeping all day just eats and goes back to sleep.
7 19 00 2:00 PM Lu: Visitor from the Church stopped by (wonderful man!) Dot, Bob, I and Melba sang some songs. 2:55 Dot taking Bob out for a haircut.
7 20 00 6 AM Lu: Everyone up. Meds given to both, put new patch on Melba ( the 24 hr one) .
8 AM Shi: got update from Lu- finished feeding Melba. Bob a little testy today but I can deal.
7 21 00 7:45 AM Lu: 2 solid Lu pages.
7 23 00 7 AM Lu: Melba up in W C. reading magazine, Bob finished c dinner & dessert working on parts; 8 PM Bob went to bed Melba & I watching TV. Sips H2O taken 8:30 had some ice cream & a cookie. 9:10 Bob up to BR back to bed. 10 PM Melba cleaned & changed PM care down on bed R side. Lights out 10:30 Bo up to BR @ 1:30 AM back to bed up again 5 AM.
PM Dot: Here for visit. Picked raspberries went to drug store to get more patches. Bob signed new check for 10/00 real estate taxes. Be back soon.
7 29 00 8 Am Shi: M & A visited last nite Melba not sure who they were. M played the piano and she enjoyed it very much. Had leak in kitchen Sophie (the plumber) came and took out dish washer and it seemed to be coming from under it. (water, that is) Melba thinks its funny to see Sophie as a handyman.
Just a note to say thanks to the family for giving me the opportunity to come for two lovely people may God bless them and look over them until the end. I will keep in touch. Shi
24/7 care has been established for a couple of months. Lu and Lo are full time. Occasionally another care giver relieves them, but it is so brief that both Bob and Melba see a new person as a familiar one. Lo continues to be very affectionate, holds Melba’s hand often, kisses her, jokes with her, and brings her little presents. His attentions delight her!!
8 1 00 8 AM Subsitute Saregiver for today: Got Melba up in WC Bkf. Egg. Cottage cheese & peaches brkf drink ate 100% meds taken reading magazine @ D R table Bob up to BR shut LR door, right back to bed. Bob up to BR 12 PM Got him to take meds c H2O. 12:30 lunch for Melba ravioli & fruit salad Bob up for brkf . cereal, orange slices toast & juice. 1 :20 Melba in bed depends changed. Peri care, napping on L side. Bob sitting in D R chair c feet up. 2 PM Went to Mrs. Thompson’s back @ 2:50 Everyone still napping 3:30 Bob having some grapes. PM up and back to bed. 4 :45 Bob up to BR lg BM . Melba awake, having H2O & juice, listening to music Depends changed, peri care done up in W C 6 PM Melba had dinner tuna & noodles grn beans jell-o & cool whip ate 50% in to wash rm teeth brushed, face washed, depends changed. Down on bed @ 7:30 drank ½ shake mil, isnt brkf. & ice cream bob up to BR x 2, plus turned off R V. Both sleeping by 8:30 PM. 1:30
AM positioned Melba on L side. Bob up to BR x 2. Benadryl taken 3x today.
11 :20 PM Sophie: stopped by to visit.
8 5 00 7:15 AM Lu: Giving Melba some H2O changed Melba @ 7:20 had smear BM . 8:15 counting petty cash $177, OK.
PM Dot: Here for visit. They look quite good! See you soon. I’ll pick up patches tomorrow when I come to take Bob to Dr. H.
8 AM Lu: Bob & Dot to Drs appt
The entries continue, and they are not without significance. However, they are much the same, one as the other. I merely record such parts of entries as I find unique; otherwise, it’s like the Iliad: too many rosy fingered dawns and tedious battles that all seem the same.
8 15 00 8 AM Lu: PM: M called from Minneapolis talked w Melba. … Pastor D also called today. J stopped by for a visit.
5:45 PM Melba a confused about who owns the house. Bob ate 100 % Melba 40 % 730 PM Bob and I walked to the end of the driveway and back appears a little short of breath, but nothing like at first.
The routine seems immutable, each entry in a neat hand providing similar details. Curiously, Melba seems poor physically but stable mentally and psychologically, while Bob has steadily deteriorated mentally, and now, quite abruptly, begins a physical decline, with right heart failure; all his life he has had clubbing of the fingers, mild but ever present. It is unknown if he has a shunt or the problem is related to pulmonary fibrosis. In any event, Right heart failure seems to be the problem. He is no longer able to walk more than half a block without severe shortness of breath. After a day when there is any activity at all he sleeps for several days. What follows is a typical edited entry:
8 20 00 6 AM Lu: Both still sleeping 7 A same thing… 8 A same thing.. 8 50 Melba awake. Getting her BF ready, changed in bed 9A Bob up to toilet, back to bed. Melba ate 100 % Meds given to her. Wants to nap a little longer before getting into chair. 10 AM Melba in bed resting. Bob still in bed, meds given to him @ 1100 Noon Melba sleeping. Patch on this AM (that’s probably why she’s sleeping). Bob still in bed 100 PM Melba & I having a snack ( fruit) Bob still in bed. (He has been drinking H2O from bottles in his bedroom) Melba doesn’t want to get up right now, she’s comfy in bed. 150 PM Bob up to toilet. Melba napping. 230 P Melba still napping, Bo in bed. 300 Melba up in chair changed, made fruit smoothie for Melba & Bob. Bob drank big glass w straw in bed. ( He liked it) Melba still drinking hers. Melba in great mood today! 4 PM Bob up to toilet, came out talked to Melba a couple of seconds, then back down to bed. Melba still in her chair. 500 going to feed Melba some dinner. Melba asked where Bob was? So, we went into the bedroom. Bob opened his eyes and said ” HI!” It was cute Melba in visiting for a moment. BR to toilet, for Melba Melba ate 100 % of dinner. Bob said he’d get up for dinner haven’t seen him yet! Bob out at table in DR w Melba getting his dinner re heated. He’s shaving his face very alert! Melba happier! Lonnie stopped by w some fresh picked blueberries, Melba dug right in. Bob ate 100 %. Bob & Melba @ D R table, visiting w Lo & I. Lo left @ 830. Washed, lotioned & changed Melba. Put her to bed @ 9ish. Bob still @ D R table. Bob in good mood. Turned off overhead light, and turned on lamp for Bob, so Melba could sleep. Bo still up @ 1030 Bob up at 1130 in D R reading.1230 Bo still up 130, Bob went to bed. Up 2 x s in the noc to toilet. Melba slept pretty good. 6 A both still asleep 7A both still asleep. Going to get the mail really quick. Great 2 days!
That’s the second relatively unedited long boilerplate entry. Had enough?
8 21 00 PM Dot: X visited Mom & Dad today. Dad knew him & seemed glad to see him. School starts for me tomorrow so I’ll be here less often & will miss the visits.
8 22 00 PM Lu: Bob up to toilet at 103 PM gave him a milkshake. … Melba snacking on fruit; she had vomited after our walk. 2:30 Melba enjoying outside. 3:40 J brought Melba inside. I took her to BR to toilet. Melba & Bob @ DR table reading. Melba’s grabbing Bob’s hand to hold on to it, it’s cute!
8 27 00 PM Ja: Lu-Lo. You have certainly been doing a beautiful job with both Bob and Melba! It is apparent that they are both well cared for. I, We, are very grateful! I have been here two days now- Mom has been sitting up most of each day, eating OK, well hydrated, skin is in good condition, good bowel control. Dad also seems fairly stable though still very inactive and uncommunicative. He has, I think, mainly right heart failure, due to pulmonary fibrosis, and pulmonary hypertension. His left heart is still very strong and able to perform well- so when the right heart alone fails, there is swelling of the lower extremities and liver. The lasix helps some, by ridding the circulation of some sodium and liquid/ water. But if there is too much diuresis, weakness results. Therefore, you can use the leg swelling as a measure of whether to use less (or more) lasix. Try 20 mg lasix for 10 days, or so, until swelling of the legs begins- then either increase to 40, alternating with 20, or even use 20 (extra) every other day. Just give whatever dose is needed to keep the swelling down. And whenever you use 40 always give the K+ with each 40 (so if you use 20 every day you can use K+ every other day.) Also, Bob tends to be constipated. Be sure to give him fruit and oatmeal every day- or you may try a couple of weeks with stool softener. Both the lasix and dehydration make his constipation worse, especially when he’s inactive. I will be leaving the 28th at about 10 AM. Be free to call me at any time, and please do so whenever you change meds or at least check c Dr. H. Thanks again for your wonderful help!!!
8 30 00 5:45 AM Ja: Melba awake, having dry heaves, repositioned, saltine crackers &H2O taken, back to sleep at 6:30 AM. Bob up 4-5 times last night.
5PM Dot: 6 45 Mom ate a little & then threw up. What she ate. I gave her gingerale.
9 13 00 Noon Lu: Noon: Lo & I talking about taking Bob & Melba for a ride in car today. Melba seems to like that idea! Took Melba to BR, to toilet. Voided, (no BM). She’d like to go back into kitchen table. Took Melba and Bob for Sunday Drive, be back ??
4 PM : We all had a wonderful time!!! We need to do that more often!!! Li here making clam chowder (yummy) Bob & Melba ate dinner. Toileted Melba. They’re sitting @ the table reading. 8 15 washed & lotioned Melba, and into bed. Bob up all noc long. 4 PM Lo stopped by, I was outside in garage, he came into kiss Melba, found her & Bob in the middle of D R (Melba in chair) w/ bloody L arms. Said “I don’t know what happened?” atrophic skin avulsions, not bad. Cleaned wounds. Bandaged.
b9 17 00 6 AM Lu: Patch on. Out of patches today, going out to get apples for apple cake. Going out for dinner 5:30
6 PM Sophie: Dad started to get Melba out of bed, explained to them Lu or I had to transfer Melba with his assist. Melba states ” she doesn’t want to get up” explained to her also about telling us.
7:25 Talked again to Dad about transferring Melba alone, (he can’t do it alone!) Monitor @ all times when Bob’s up. He’s just trying to be helpful!
8:00 PM Dot called, will be by tomorrow afternoon. Thick white yellow mucus out (after she coughed up) with two sips water taken.
Sept. 24 2000 Hospice Nurse: stopped by at Dot’s request. We’ll handle paperwork tomorrow if needed. Melba looks very peaceful and well cared for as you had said Sophie, everything appears well in hand. Some thoughts:
1. I see you have injectable morphine sulfate. I am leaving an “injection site” for you. This can be primed with morphine sulfate, then placed subcutaneously at 30 to 45 degrees angle. Anywhere, back of arm, side, stomach or even chest (sub clavicle) and held in place with the tegaderm. We then placed a needless cap on it and injectable meds can be given without needing to poke her for each one.
2. Her fever is likely to increase her uptake of the fentanyl from the patch. This means is likely to go dry after 24 to 48 hours instead of 72 hours like normal. If you can see the patch you can check it for evidence of the medicine or you can change your routine dosing to every two days instead of every three.
3. The shakiness and tremors she has might be calmed by lorazepam an antianxiety and muscle relaxants agent. This (and the morphine) is available as the oral fluid which requires only one fourth to one-half milliliter for dosing. I think she could tolerate this much by mouth. Or it is it is available as injectable and given via a site (as described above). Note: I left one all primed in the bag with the morphine sulfate. I am leaving an information packet Terry had it may contain some useful information. Let us know how we may be of service now and in the months to come for dot and any other family who wanted.
4 PM Lu: Bob out of bed, helped him change clothes. And off we went for a little scenery and stopped off for burgers and onion rings. Bob enjoyed his ride! (He kept telling me so) So stayed with Melba until we got back. Dot here for visit and check writing. Changed Melba, she’s dry at this time. L came over to visit, and check Melba’s arm. Dinner. Sophie here throughout the night thanks S.
Sept. 26 2000. No entry.
The following Obituary appeared on Sept 27 2000 in the Sacramento Bee. ” Melba, age 92, died at 9 AM Sept. 26 at home , with her husband of 69 years, Robert. Melba was born in Orvoille, and raise in raised in Durham, California, attended Chico State College and graduated from Stanford University in 1929. She and Bob were married on June 25th, 1931, in Durham, California. Together they outlived the depressions and wars of the last century, in mining communities of Canada, the Philippines, Mexico, Washington State, California, Oregon, and Minnesota, while raising four children. Melba also is survived by 15 grandchildren and 8.9 great grandchildren. We remain humbled by the mystery of being, and by Melba’s strength of spirit and will. We once and again gratefully celebrate Melba’s life, and now reluctantly recognize her escape from those earthly bonds that we find so dear.”
Sept 28 2000 10:30 (Lu) Good Morning- Called Heating store and they will arrange with Soph to come assess a furnace installation. ( 1 or 1 1/2 days) to install. Thurs 12th 1:30 PM. S will try to be here.
Silent pages Speak
For the next two months there are no entries at all, though people come and go, and take care of Bob. The underlying focus of the five year effort is Melba. Caring for Bob is only tangential to that effort. He, as usual, takes care of himself. But now he is even more withdrawn, sleeps the great majority of the day, and doesn’t communicate much or even pretend to read. Right heart failure can be a long slow disease, helped by medication and a restrictive diet; but Bob’s mind has left him and taken with it his will to survive. Though he breathes more easily now, he cannot tolerate even minimal physical activity
Nov 30 2000 Ja: Arrived yesterday evening after a long (12 hour) day on the plane. Actually, off the plane in the airport at SLC. The Delta flight canceled about two hours after intended departure due to weather. I finally got away at 5:15 PM , arrived airport where Dot was waiting.
Dad was asleep when I got here. I went in and said hello — he responded but didn’t open his eyes. Nonetheless, the next morning he told Lu
” Our son is here.” I had stayed at Sophie/Wi’s that night.
When I arrived Dad was at the table, in good spirits, alert, and I thought, more responsive and alert than last time I visited. He did suggest, after a while, that I “Say hello to my mother.” Very mellow, seems happy almost all the time. He has help with dressing, but cares for himself generally, feeds himself, makes it to the bathroom usually, and is not incontinent. It seems to me he is therefore at a good stage, if senility can be considered good at times: he is content if not self-aware, and bis marginally competent physically. The diuretic and digoxin and have provided his heart some help, no edema now, and able to walk without so much dyspnea.
We went — Dad and I — to the barber shop, to have his haircut. (He constantly had fussed with his long Einsteinian side-head display of white, sparse hair, looking in the mirror after pissing in the sink.) Lu loaned me her car, and we went to the barber shop. Afterwards visited Sophie at her house. He seemed to enjoy both. That night he read the front page of the paper for several more hours but didn’t want to go out to eat with Sophie, Wi, and me.
December 1st 2000 Ja: I moved back to dad’s house (from S’s) last night, and Lu and Lo abandoned the upstairs bedroom, much to my embarrassment. I would have, could have, should have, slept in mom’s hospital bed in the dining room, but for some reason was uneasy about that. Though I know we shall all sleep there one day, I suppose I didn’t want to rush things!
The new furnace is great. But the fan is on too high a setting — so the airflow is at the level of a small gale. There should be small craft warnings. I thought the house was a bit too warm at about 70 to 75 degrees and have lowered the thermostat to 65. Hope that’s not too cold. It’s all relative although respiratory/airborne infections travel more readily in warm air.
11 AM Lu has gone to get her (flipper) or partial bridge, which had broken. I’m here with dad. Got him dressed. He’s reading as I write this, and looking at the pictures (which we set on the piano for Mom to look at.)
Ja: I notice that this notebook actually ends about the 25th of September. While it is not really very much needed for medical management, I think it is still significant as a simple record. There is no longer any need to write great deal about how much and what dad eats, how his B M looks; (unless that does something for you ! ; ) . Just a sentence or two, when there is something interesting, important to convey, unusual, funny or touching. Like the fact that he asks for his good night kiss each night; or how he now looks wearing Lo’s clothes and uncharacteristically clean new Court Costco wear Court Tennis shoes; He is now better dressed than at any time in the past six of decades!
December 2, 2000 Ja: Yesterday Dad took a walk with Lu and me, got very short of breath and weak after ½ block; but we came back and he recovered well. Later he went with Lu to feed (her) dogs, and then watched TV. (!) It is ironic that NOW he does that, and even tolerates the lights being on; he asked when we would put up the Christmas lights Lu brought! Agrees (if asked) to watch The Grinch movie and doesn’t mind the house being heated, or the dishwasher being used!
All this activity seems to stimulate Dad. Last night I went to bed about 11:00. He was ‘reading’ at ‘his’ table. About 11:30 he came upstairs x 2 to get in bed with me. I took him down to his bed but he got into the hospital bed. Afterwards I wondered: “Why send him downstairs? If he wakens confused in the dark and falls down the stairs? If he wets? Perhaps, knowing that he has always done or chosen to do exactly what he judged best, regardless of the world around him, who am I to say him nay at this juncture?” But by then he was soundly sleeping.
December 5, 2000 (Vj?) Bob up at about 7 AM, a good breakfast. He’s all smiles today. 1:30 PM made Bob lunch ate good.
7:40 PM Bob ate Ham scalloped potatoes boy did he like those. He had seconds on everything. He went to bed about 8: 30 PM.
12 6 2000 AM Vj: Got Bob up. He had a shower, we shaved him. ate real well. I made Bob an Apple pie and wrote his name in the crust. He knew that was his name he really liked the pie. Bob always wants a kiss good night. Lu started that; it’s so sweet.
December 11th 2000 Vj: Bob woke 8:30 AM Up, showered; change his cloths and bed. He ate real good -oatmeal, fruit, yogurt and juice toast. Bob and I read his exodus cards and he really liked the pictures on the card. Made Bob clam chowder and a fresh loaf of bread and he ate real well. Went to bed about 9:30 PM.
December 12th 2000 7:30 Lu: Bob got up at 730. Had breakfast and cleaned up. Ate lunch gave some almond Roca. He loved that, and Dot brought some peanut brittle over. He’s enjoying it. Bob had chicken and potatoes and gravy and green beans. Ate real well. He read the paper. It’s been real cold out but we’re keeping warm. He’s great. I love being here with him. What a great guy. Went to bed at 9 PM.
Dec. 13th 2000 PM Lu: Bob woke up at 8:00 AM He ate scrambled eggs and cheese, banana, orange, juice, milk, toast. He ate well. He loved Dot’s peanut brittle. And cookies. Bob took a nap 1215, it’s 3 PM now he’s having some yogurt and banana, milk, croissants, some ham. Shaved. Bob thinks I’d be a good barber. Talked about Christmas and a Christmas tree; and how pretty woods are with fresh snow. Such a sweet man. I love him!
Moving to 24/7 in Home Care
Chapter XXII Moving to 24/7 in Home Care
Sophie’s leave of absence is over. Shi is moving to Mexico and Vj will go to India for several months. Melba will soon require 24 hour a day care; Bob also needs to have someone there because of his confusion. Sophie and Dot work with Shi, Vj. Lu comes with her significant other, Lo; they are a team, a big plus for live-in 24 hour care. Contrary to previous changes, this one will not be disruptive. Lu is vivacious, slender, and blonde. Though Bob is increasingly confused, he certainly notices! Lo is a rough character who is gentle, affectionate, and thoughtful with Melba. She is not altogether sure who he is, and sometimes confuses him with her son, Ja.
4 29 00 4 PM Shi: Bob decided to go for walk didn’t come back so call police.
5 :15 a lady brought him home, I didn’t even know her. He said he went up past the the school (about a mile and ahalf away) all is okay now.
5:30 getting dinner . Vj put name tag on Bob again it was on table.
8 PM: Sophie: Wow. Thanks to you all. How can it be that dogs can have an implanted chip, but not people! What an irony that we are not only frightened of germs on our cutting boards, but afraid to use technology to help lost old people or even children ! Do you think the vet would put a dog chip in Dad? No, it would be elder abuse I suppose.
Sophie had prepared a name tag for Bob, but of course he went out without it. More, he finds it demeaning. Yet some one in this small town recognizes him. Another feature of small towns where eveyone knows your business and talks about it.[i]
5 2 00 7:45 AM Vj: Pacemaker checked and they say it is perfect… Ja called he said he might come on mother’s day he talk to Bob and Melba. Leaving at 4 PM.
PM Dot: S Paid Shi for her regualr 39 hours as we discussed. Paid bills took mail & visited.
5 4 00 7:30 PM Vj: HURRAY Today Bob took shower in the afternoon by himself.
5 7 00 8 AM Shi: Lu was here & will come in the mornig to meet with S & me to see what goes on in AM. I think you shld hire her. Bob
2:30 Sophie: Here to check with Vj and Mom & Dad. Lu is going to start on Tuesday May 16. She will have a couple of weeks to get grounded. Dad really likes her. I will start by showing her how I do it on 16th and 17th; on 18th . She can call me if she has any questions. That gives her 12 days and evenings to get adjusted to them. And them to her. Vj doing AMs until she goes to India. She has to stop her other job gradually to start here so 4-8 shift is best for Lu then she will pickup 8- 12 after Vj leaves. I don’t think we should bring in 3rd person until afte mid June. We have Li, and several others to consider. I will gladly pay Shi an extra $195 for doing my evenings til she goes, and Di to start Lu.Then I’m done with the care giving aspect of this. Dad will miss Vj, and I think, also Shi.
5 13 00 Shi: Pastor from church came and gave Melba communion and visited for awhile.
5 14 00 8AM Shi: Happy Mother’s Day! D came and brought cookie for Melba & cut her hair looks good.
5 16 8 PM Sophie: Lu- I will come here at 6 PM to show you what I do at night. Put sandwiches out, water, and ice ceam. Mom eats very little – ice cream and cottage cheese perhaps. Recyling day- !
3:50 PM Lu: Melba resting when I arrived. Asked if she’d like to get up. She didn’t want to . Seemed a bit confused , that I was here. Asked if she would like some H2O, she did. Brought Bob some H2O also.
4:30 Talked Melba into getting up. Put her on toilet had small BM washed her up changed under pants. Brushed her hair wahshed her hands & face. Sitting with Bob . Keeps suggesting hey’d like to eat. Answer soon! Brought Bob & Melba some H2O.
5:50 eating dinner ( Vj fixed some sandwiches ) H2O ice cream ½ of a ½ sandwich. Bob ate really well. Melba is very confused about me, @ this time Bob is happy, “Thank You!”
6-8:30 Sophie: Pictures set out- ate as above- to bed- skin looks good- funny mood.
5 17 00 7:45 PM Sophie: Confusion may be due to 1) med change 2) going to bed for rest in daytime 3) Lu.
5 PM Lu: Melba still confused as to who I am. Bob knows!
Dot: paid bills & visited w/ Lu & Mom.
7:45 PM Lu: Everything went wonderful to noc! Melba seems to be adjusting just fine! Washed up and put her to bed.
5 18 00 8 Lu 4:30 Took Melba to toilet. Sm loose BM. Melba does not appear to be as confused today.
5 :10 fed them dinner ( turkey sandwich, soup & ice cream; wahsed up & put to bed at 6:15. Went very well, I thought, to noc.
5 22 00 12:30 AM Sophie: Driving by house—Dad still awake at table- I told him to go to bed. He said he would- but is still sitting in chair having slept at table for some unknown period of time. After 10 minutes and two more attempts- he went to bed.
5 23 00 7:30 4:30 PM Lu: Melba & Bob sitting in dining room reading. S stopped by to visit. Bob & Melba do not seem as confused, today! Had a nice evening w/them! Put Melba to bed @ 7:20 Brush hair/ teeth, wahsed up & put to bed w/ her vicks mentho. Laft at 7:40.
5 24 00 7:45 AM Vj S come mow the lawn and talk to her for a while.
4:30 Lu: All is well!
5 PM Dot: paid bills- visited w/ Shi & Lu. Mom & Dad look good!
5 25 00 5 Pm Lu: Melba confused. D & S stopped by. Perfect timing! Brush teeth,wash up, peri area, a little thing, but diprolene cream to her behind. Seems to be opening up in coccyx area. Melba always gets happy while washing up in the bathroom & after she gets into bed! And especially when she gets her vicks rub & feet warmer bag!
8:30 Sophie: Thought about Mom’s increased confusion- too many changes too fast. Moved piano back and put bed where green chair used to be. Dad very happy to have piano back in its place. Very relieved- kept telling me how glad he was to have room back in order.
Bed needs plug adapter- I’ll bring one.
Melba is now in a hospital bed, in the dining room adjacent to her kitchen, most of the time. Reverting to a familiar physical surrounding by bringing back her old refinished distressed upright piano, and surrounding her with old familiar photo faces helps her to adjust, especially when she wakes at night.
5 27 00 8 AM Shi: D came and cleaned the garage and planted tomatoes. Melba laying in her bed 2:30 to 4:00. Loves it!
5 29 00 Vj 8:30 AM: Lu stop by and talk to Melba. Leaving at 4 PM.
5 30 00 4:30 Lu: Melba not as confused, ( I’ve got my name badge on) today. She seems happy. Bob always does! Dinner at 5:30 Melba wanted to go to bed but got her to come out & eat. Turkey sand, cheetos, canteloupe, w cool whip. Melba is really enjoying Daddy today. Melba did not eat, tried to get her to; so that she could take ibuprophen, she drank some H2O & a couple of cheetos.
Lu mentions Daddy for the first time here. Daddy is her boyfriend, Lo. He doesn’t make entries in the notebooks, but is a significant Presence. He sits by Melba’s hospital bed in a chair, talks with her, holds her hand. He brings her Mocha, and delicacies she likes. She is not sure who he is, doesn’t care, though usually she thinks he is Ja.
5 31 00 7:30 4:30: Lu: Melba seems much better today. Shi, there is a sandwich deli turkey lettuce in plastic bag (next to it) and some hamburger left; and Melba’s dinner in saran wrap please eat or toss!
5:00 Dot: paid bills.
6 01 00 5:00 PM Sophie: Mom still very worried about Lu- once Lu starts doing PM care, however, Mom stops being so afraid. Monday is garbage day. Dad needs bigger underpants!
Bigger underpants? Bob is inactive. His flat belly is leaving him. His pants are often un-buttoned and tend to fall, which generates entries about suspenders and belts.
6 2 00 8 AM Shi: Both sleeping. There was water on stove on low.
6 3 00 8 AM Shi: S was here to get some of the garbage & visit.
Bob may be slipping but old habits die hard. Sophie still has to spirit off the garbage so he doesn’t 1) recycle it 2) burn it in the airtight stove!
6 5 00 PM Sophie: Garbage away. I had to come one mornig this week when Shi called saying animals were eating half burned garbage and spreading it around outside . I picked it all up leaving it in can.
A new green garbage can appears with automatic closing lid! The garbage men may suspect Bob is gone; in a way, this is evidence he is, at least partly.
6 7 00 PM Sophie: I’m going to the cabin- I’ll come back tonight to take Dad to dentist tomorrow at 10:00 AM then I go back to the cabin on Thursday. Mom looks as if she has lost weight and is now sleeping in daytime.
4:00 PM Dot: Here to pay bills and talk with Lu and Shi. We talked about interviewing another caregiver and about how the schedule would work. I will call Vj & talk about the changes, to see if she would want work in September when she returns. I’ll also call D & tell her that I’ll be in touch in a week or two. I have a meeting on Monday to set up the payroll/ soc sec plan. I will also see what it would cost to have them do all the payroll & possibly all the bills. Lo has offered to mow while S is away. We talked about what Melba might eat more of at dinner. Milk toast? 1/2 grilled cheese? Eggo waffle? Ideas?
6 11 00 8 AM Shi: Melba up at 10:00 could barely get her out of bed in so much pain leg won’t bend. …
PM Dot: Here for short visit and trip to the dump. Lu & Lo and I will start the garage clean-up. Mom is pretty weak. Dad is good.
8:30 PM Sophie: Gee! It still smells like skunk in here. Mom awake- we visited until 9:30. She drank just a little from a squirt bottle. Who owns it? I’ll replace it. Dad at table. Happy & compatible. I took way the ibuprofen, we should go back to tylenol. I talked to Ja he says increasing (anti inflammatory) pain meds can cause problems especially at this age. We need to asess tomorrow AM and check with Dr. H regarding her condition and meds for comfort and pain. If she doesn’t eat at all she will not last 4 days and may need some meds to decrease anxiety and increase comfort. If she gets going again then we will need pain meds or shot in hip.
Dot is cleaning the garage, moving out an accumulation of years. Sophie is writing and thinking about Melba’s refusing to eat, losing weight, and increasing confusion; her comment about surviving four days without water and food reflects her concern.
6 12 00 8 AM Shi: Bob reading at table. Melba awake but will wait a while to get up. S came 8:30 helped get Melba washed & dressed still hurting, weak & shakey. S to call doctor to check on her pain med. Charting her intake, I feed her as hard to hold spoon & will eat more. Got Melba up at 1:00 to kitchen to eat had dinner & soup but asked to go back to bed. 1:30 comfortable in bed.
7 PM. Sophie: Dr H called back. Pain patch for Mom. It was put on at 7:15 PM today and will work for 3 days. If Mom is too asleep then we have to take patch off and proceed with elixir codiene that is in med cabinet. Mom says she would rather sleep than be in pain. I will come back and put Mom to bed tonight. Also, I will be here at 8:00 or so in AM to help Vj. The patches were very expensive and this is just fine.
8:30 PM Sophie: Mom ABLE TO GET UP IN BED ( EDGE) WITH VERY LITTLE PAIN. Transfer to chair and to bed, however, caused pain and throwing up. Had medium sized – soft BM. Urinated in bed too. I had trouble with night gown… I didn’t want to turn her. I’ll be here 8:30 or so to help you figure this out and evaluate pain control. 10 PM Mom is sound asleep.
6 13 00 1:00 AM Sophie: Both M & D asleep. Mom on back breathing normal and deep. House still smells like skunk. Mom had big marks under her arms- she also has pain in left chest near arm pit- guess it is where we have been lifting her. It really hurt her there tonight and in hip when I put her to bed. I don’t have any good suggestions as to how to transfer her without weight on bad leg or pressure under arms. Perhaps leaving her in bed and being with her at night, or perhaps pain meds will help?
Patch: I have read the instructions- WATCH FOR OVER SEDATING AND HYPOVENTILATION. If breathing is too slow- remove patch and don’t give any additional pain meds. It will work for some time after patch is removed.
If you get it on your hands – wash with lots of running water- no soap. Fold old paper (from pain patch…fentanyl) on its side when removing place in container, not garbage. Both are in bed asleep. Mom’s breathing is deep and about 16 breaths per minute. Dad: dentist Wednesday at 10:00.
7:45 AM Vj: Bob up sitting in chair without clothes. S was here I think all night watch Melba because of her pain patch. Melba was sound asleep give her bed bath and 12 noon. Washed and put body lotion. Brush her teeth changed her night gown bring her to the kitchen. Give Melba some cereal she ate all but throw up same time little green vomit give Melba one scrambled egg she throw up again give her I B she drink only ½ of it. Put her back on bed put some valu-dry ointment on her back red spots a R arm where it’s all red. give shower to “Bob brush teeth and shaved. So was here most of the time she bring the groceries- worried about Mom. Clean the floor. Bed made. Laundry done. Get the mail. Lunch cream of chicken soup bowl of ice cream and ½ cup of left I B feed Melba in bed c spoon she did very good swallowing after soup give her ice cream and then I B very slow. She didn’t throw up after lunch. Seems she digested it Melba slept off a on Bob sleep most of the day in chair.
4 PM Lu: Bob sleeping @ table Melba sleeping in day bed. Melba threw up @ 4:05.
5:00 PM Dot: Worried about increased tremors and throwing up. Appears to be very dehydrated.
6:00 PM call from Ja : 1. Remove patch for now (side effect shaking, n/ v, staring or startled look until adapted).
2. Hydrate at home
3. nausea suppositories if needed
Helped Lu & Lo clean Melba up. & sit her up. 7 up & H2O good she was quite warm.
9 PM Lu: Melba’s temp 98.3 seems a bit clammy! Threw up again at about 8:30. So went down to get suppository to help w nausea. Changed.
9:30 Dot: Temp 98.4. So & Lu put suppository in. Gave a sip of 7-up. Talked to Ja again. Place patch again. Sal put it on about 10:00.
10:30 My ear aches- so I’m going to lie down in the recliner. Good Luck.
6 14 00 Dot: Visited w Lu & Sophie. During the night Dad got up 2 x to ask Mom about coming to bed.
Plan:
Lu will stay tonight
D will stay Thursday night
D will talk w Shi about weekend nights and PMs
After that Lu and Lo will be here
We will relieve them whenever needed and be in and out.
24/7 care begins, with a likelihood of hospice type care in the near future for Melba. In some ways this is the most difficult of elder care situations for family… yet in the longer run it is most significant. A newborn, like an infant, is totally dependent on someone else, usually a parent. The circle is completed when that same infant, grown, is permitted to give back.
[i] The technology now makes all this moot, if one is willing to take advantage of it. Even a satellite connected cell phone can track a person, a child or even property that strays.
The (911) Gobble-uns ’ll Git You
Chapter XXI Melba Notebooks
4 2 00 8 AM Shi: Lunch pot roast, aspergas, egg plant, potatoe salad, pie. MELBA VERY WEAK, GRAY IN COLOR, UNABLE TO SPEAK. SWEATY. CALLED DOT SHE CALLED 911, WILL MEET THEM THERE.
PM: Dot: Sophie-PARAMEDICS CAME TOOK MOM TO HOSPITAL BOB WENT WITH THEM. They kept her for 5 hours, and sent home. Thought it was a side effect of the new fentanyl pain patch. It only cost taxpayers about $15,000. OK, Dad, I hear you!! After talking it over:
1. We think it is time for a hospital bed. That way Mom can vary her leg position and when we need night help it will be easier. She could still get up for bathroom & meals. She could even sleep with Dad.
2. We agree that we might want a schedule change.
8-4 Vj
4-7 Sophie
7- 7 Shi
Weekends Fri night to Monday AM. Shi & another caregiver?
4 3 00 8 AM: Shi: Melba sleeping soundly. Bob up.
PM Sophie: Vj can’t come and stay until 4:00. She has to go at 3:00 to get Indy. I don’t know – I have to see how Mom is to evaluate needs.
4 4 00 8AM Vj: Red around Bob’s sore put some neosporine looks like some red rash around it S please take a look leaving at 4 PM
4 5 00 8 AM Vj: Melba sing song for me the poor orphan nanny.
One of Melba’s favorite children’s poems, by James Whitcom Riley:[i]
“…Wunst they wuz a little boy wouldn’t say his prayers,–
An’ when he went to bed at night, away up-stairs,
His Mammy heerd him holler, an’ his Daddy heerd him bawl,
An’ when they turn’t the kivvers down, he wuzn’t there at all!…
An’ the Gobble-uns ‘ll git you
Ef you
Don’t
Watch
Out!”
Poetry and music are embedded in our deepest self. Melba and Bob grew up when recitation of poetry was not only an academic virtue but entertainment, a social grace. They can still quote poetry for hours at a time. This scary poem’s meter and rhyme and imagery echoes through my mind like a beloved song.
How curious that this poem surfaces from the hundreds below the surface of Melba’s memory just after her 911 call. Maybe she is alluding to 911-ers and their siblings from a frightening universe who like to gobble up helpless people, children and old folks : Ambulances, hospitals, nursing homes, operations, invasive diagnostics. Fortunately Bob and Melba have made their wishes clear on the matter, and all their children are aware.
PM Dot: paid bills including April real estate taxes. Dad signed a check for Fed income tax which we will mail asap. Vj- could you please run Bob down to the barber shop for a haircut? I left $20 to cover cost.
7:30 Sophie: Put Mom to bed. Glad to be flat and ready for a good night’s sleep.
4 6 00 8 AM Vj: Bob and Melba still in bed Bob get up at 10 AM went to bathroom a went back to bed they both didn’t get up till 1 PM. Sophie come and get Melba up.
6 PM Sophie: Mom in chair –slumping to left- unhappy that she could not get up by herself. Glad to be in wheelchair. I’m sure, however, that being in chair was good for her.
7:30 PM: Mom got weak and I had to grab her twice under arm- she may have my hand or finger tips as a bruise there. Be careful- she is weak.
4 7 00 3 PM Shi: Mom reading about price of gas to dad but she says no matter we don’t have a car. 4:30 wanted out of chair.
4 9 00 8 Am Shi: Bob sleeping at table all nite.
4 10 00 AM Shi: Sophie, while V Jay is gone I would like Fri Sat, Sun & Mon 12 hr Tue Thur 8 h r with Wed off. Thank you.
4 11 00 7:30 AM Vj: Did some yard work with Indy Melba outside on the green chair.
7:30 PM Sophie: Put Mom to bed she was worrying about Indy.(Vj’s young son, who accompanies her at times.) Was anyone taking care of him- Very relieved when I told her his mother Vj was caring for him OK. ” Oh, good!” she said…
4 12 00 7:45 AM Vj: Melba a little disoriented wants to know where we are gong for a trip where we are now who is paying here try to answer her but she keep on asking. Get mail.
7:30 PM Sophie: I will be by in AM to visit- bring movie for Indy and pick up branches -grass clippings were taken up by mower.
4 17 00 6 PM Sophie: Lawn mowed- dinner set out. At Goodwill, got dad new shoes, belt, 6 pair pants including as Sunday set light blue dress pants. Shoes are big- but his feet are swollen so I hope they will fit when tied. He seems happy- wants to know if it is good for Mom to go to bed at 8 PM. He thinks it is too early!
4 20 00 7:30 PM Sophie: When I arrived dad was not here. He was out picking dandy lions- seems very happy and not in any pain. Did dishes with Dad. Urine on bathroom counter. What a beautiful evening to pick dandy lions!
4 22 00 8 AM Shi: Her leg is really hurting today; gave tylenol 3 times.
4 23 00 Sunday 8 AM Shi: Bob getting ready for church. They will have a pancake breakfast.
PM Dot: Happy Easter. Did eggs & brought some dinner.
4 26 00 7:30 AM Vj: Bob & Melba still in bed Bob get up at 9 AM brush teeth a give shower, body lotion and dress him for Dr’s appt. did the back dressing still some redness but looks OK.
4 27 00 5:30 PM Sophie: It is dark- pouring down rain. Dad got dinner, good stuff but a piece of raw turkey. I whisked it away but now I can’t find it. Maybe Dad ate it while he was doing the dishes. Oooops. If you find raw turkey, give it to Cat.
4:30 Dot: Met Lu for coffee with Sophie. Lu came to visit Shi. Paid Vijay & Shi.
4:30 PM Sophie: Met with Lu to ask about job replacement while Vj is away and when Shi moves L Everyone got along well. Mom and Dad especiallyliked having the house full of people- Dot, Shi, Lu, Lo, and me.
7:30 Put Mom to bed. She wants to know if the young people have food and a place to stay. I set dad’s alarm for 10:30 so he will go to bed. Too many all nighters at the table! Also turned off his big hearing aid- which works well for him. Now: Will he hear the alarm?? Mom to bed. Still no raw turkey. Shi didn’t have time to get suspenders. Here are some of Wi”s. Hope they work. I feel like I have been living here lately.
Shi will be moving to Mexico where their fixed income will be enough to live on nicely. This makes the next step, 24/7 care for Bob and Melba, timely. Shi’s friend, Lu is the best candidate. Lu is a nurse, daughter of a physician. She will live upstairs with her husband, Lo, an ideal arrangement for everyone concerned, as that will be rent free for them, and Lo will be a big help. The notebooks begin to reflect that Lu is very clinically oriented; they are written in hospitalese, a kind of mind-numbing medical boilerplate. Nonetheless, both Bob and Melba are enchanted by this vivacious, attractive younger couple.
[i] Little Orphant Annie’s come to our house to stay,
An’ wash the cups an’ saucers up, an’ brush the crumbs away,
An’ shoo the chickens off the porch, an’ dust the hearth, an’ sweep,
An’ make the fire, an’ bake the bread, an’ earn her board-an’-keep;
An’ all us other childern, when the supper-things is done,
We set around the kitchen fire an’ has the mostest fun
A-list’nin’ to the witch-tales ‘at Annie tells about,
An’ the Gobble-uns ‘at gits you
Ef you
Don’t
Watch
Out!
Wunst they wuz a little boy wouldn’t say his prayers,–
An’ when he went to bed at night, away up-stairs,
His Mammy heerd him holler, an’ his Daddy heerd him bawl,
An’ when they turn’t the kivvers down, he wuzn’t there at all!
An’ they seeked him in the rafter-room, an’ cubby-hole, an’ press,
An’ seeked him up the chimbly-flue, an’ ever’-wheres, I guess;
But all they ever found wuz thist his pants an’ roundabout:–
An’ the Gobble-uns ‘ll git you
Ef you
Don’t
Watch
Out!
A Perfect Whole From Imperfect Parts
Melba Notebooks, Chapter XVIII
Bob and Melba are age 91, in their 92nd year of life. They have been married for over 70 years. It’s obvious that 24/7 care will be required in the near future. As a first step, Sophie takes leave of absence from her work. She is here from late afternoon until bedtime, making regular Notebook entries, while Shi, or Vj, or occasionally others, are there during the day.
At night Bob and Melba still are on their own. Shi usually makes entries, but when they are repetitious, are omitted here. Vj rarely makes an entry. Others who come and go usually do. All these caregivers have families and homes of their own. The intricate communication and logistics required for them to deal with conflicting demands and cover one another is an important feature of the notebooks.
Sophie and Wi’s son is in college at PLU in Tacoma, Washington; he’s a three sport athlete more than 6 feet tall; they actively support him, traveling regularly on weekends to his games in far away colleges. Wi is at the epicenter of county mental health politics. Sophie is a psychiatric nurse practitioner.
Dot and Ni have three children about college age; he is a very well known judge; she works full time as a high school counselor. Dot tends to look to professionals for guidance, while Sophie tries to avoid that as much as possible.
Vj is a nurse, an immigrant from India where she married a vicious and abusive man. Fleeing to the US with her son, she married another Indian immigrant; yet he is old, and old- world, dominating, and again, abusive, which not only affects her directly, but also her son. She is a nurse to other elderly people beside Bob and Melba, and deals with her own health problems and those of her family.
Li, who doesn’t write much, is married to an alcoholic whom she loves unreservedly; she is the economic backbone of their marriage. There are others who appear through these pages, each providing something unique, and vital to the success of the effort recorded in the Notebooks.
10 4 99 12:00 & 5:30 & 8:30 Sophie: I told Mom in Spanish that I only spoke Spanish when she said she didn’t want to eat. Without a moment’s thought, she reported in Spanish that she didn’t want to eat thank you. Dad has microwaved the hot water bottle again. She said she had been wondering where the hot bottles had gone.
10 5 99 8:00 AM Shi: His (Shi’s Significant Other‘s) eye is better. But half to go back next week again its costing a fortune when you can’t go by the casino.
Casino? HMMM. Another feature of Shi and her S. O. They game, or gamble, and suggest it pays. Her long elegantly decorated curved nails seem inappropriate for nursing chores, or even for writing. Imagine how it is when she must clean up poo poo. One has an uneasy feeling that she performs best when someone is looking. Nonetheless, she is tenacious, resourceful, and admirable in her handling of a very difficult man; as one can hear in these notes, she has withstands dad’s verbal and sometimes physical abuse, yet tames o at least manages him. At first, when Dad has blowups, Melba is distressed and takes his part, an old pattern. She has always complained about his behavior but defends him whenever anyone is drawn into the debate. Shi doesn’t buy into that. She keeps her focus on the fact that Bob is the problem and doesn’t respond to Mom’s backsliding. It looks like, with Sophie’s help, a painted- claw Casino bear can deal with this mean old caged grizzly.
5:15 & 8:15: Sophie: Unable to walk to bed. Used pot chair at bathroom door. Actually, it worked rather well. To Bed. Hot H2O bottles ready. Mom says she is glad to be in her own house and her own bed. J
5:30 Sophie: Such a treat for dad; Rhubarb pie is one of his favorite things.
In the miner’s village of Holden, Washington[1] we lived in a house Bob built between underground mining shifts, using mainly material ordered from Sears or ‘Monkey’ Wards catalogs. I remember him sawing, hammering and sweating while Melba read Sherlock Holmes aloud to us. Years later I revisited Holden. The house was one story with two little bedrooms, a kitchen and and a bath on the entry floor, an attic (my bedroom,) and an unheated half basement underneath on the down side of the mountain; maybe 700 sq ft in all. It had been razed, in accord with National Forest requirements when the mine closed. I found only the stub of the street light post in front, and an eternal rhubarb plant in back.
8:30 P M Dad was trying to help Mom into bed. She was crying- laying flat with no pillow (like dad sleeps). On further examination she had diarrhea all over under covers; gave her a bed bath and changed sheets. Ah…Florence Nightingale would be proud. … Push fluids tomorrow.
10 7 99 5:00 PM Dot: Mom couldn’t make room for left over rhubarb pie. Too bad. I had to eat it.
8:00 PM Sophie: She forgot Dot had been here; said, when I told her Dot had gotten her all dolled up:
” NO she didn’t. After all, I am an attractive lady. “
10 10 99 4:30, 5:00 PM Sophie: Dad has pain in his mouth— again. He must have lost a crown. I’ll have to call the dentist tomorrow. I’m trying to get Dad to dump his ashes into the green wheel barrow . Also I took hot water bottle away. The leaking one, from too much microwave. Last night I put rice in I’s big sock for mom’s feet. His football team almost beat Fargo even though their star running back dislocated his thumb on the first play of the game and then fumbled three times…ouch. That meant that the running game was out and the other team just rushed the passer all day making for a very long and hard day for I, who blocks for the quarterback.[2]
7:00 PM Sophie: Washed her up, put to bed. We may have to get another thermostat that we can control! Dad got call from information on what people watch. (TV Ratings) I laughed so hard. I’m going to try his technique. In the end she was begging to hang up: different phones- repeating- he doesn’t live in Dakota, he lives in Canada- it was great. “What? I can’t hear you!- No one should watch TV- Did you say Sacramento? “
Fed cats. The next door neghbor must be out of town.
10 14 99 8 AM Shi: Cat is looking thru the window staring at Bob….
8:15 PM Sophie. Mom trying to get in bed with Dad’s help. She was afraid to tell him that she had to go to the bathroom. Poor dad didn’t know how to help her. Thermostat at 68. Hot rice bags on both sides of bed. Dad has still not called dentist. I told him I was going to call tomorrow.
10 15 99 8 AM Vj: Bob was still in bed when I arrived, Melba was in the bathroom she had a big B M, the bathroom all the walls a floor was dirty she was confused & put all the towels on it to clean; she was happy to see me. Clean all the walls a bathroom give her bath a wash her hairs.
6:00 PM Sophie: Vj- Mom’s pills are in this paper bag.
10 18 99 AM Sophie: It must be Monday- Dad changed his clothing. I took old stuff and light blue jacket and put in the washing. I’ll catch it if he notices. I think Mom needs another movie. Dad is not talking to her or he is asleep. She is reading Dot’s magazine- hmmm Dad must be asleep.
12:30 PM Dad under- cooked pot pie in microwave- Mom didn’t eat.
6:00 PM Dentist apt tomorrow I’ll try to take him. He may have a cold; he was just blowing his nose on something- I think some mailed junk literature- I have been trying to get him to put a belt on . He won’t do it and has to walk around holding up his pants. I’ll bring him another belt tomorrow.
10 19 99 9:50 AM Sophie Came to take Dad to dentist. My Gosh! It’s 9:15 and he still isn’t reading!
12:30 Dad took his meds. Teeth are OK but cleaned. There is no pin sticking out.
6:30 Put Southwest Choir tape on. Mom to bed with rice bag. Put clothing away. Dad has put his stuff in Mom’s closet.
Bob and Melba have seeded our lives with literature, music, and rhyme. Reading aloud, poetry, Rancheros, Gilbert and Sullivan, classic opera, symphony. At Southwest High School in Minneapolis, we all were a part of the 90 voice a capella choir, practicing one hour daily; It took us to far away places in body and mind, and allowed us to escape many classes in order to sing. In those days school choirs were allowed to use religious music, from whatever source. The tape is one of those made by the choir, and it brings the past to life, as only music can.
10 20 99 9:15 AM Sophie: Shi is better but still sick with bronchitis.
7:00 PM Movie about Hawaii. Mom sneezing. ? cold?
10 23 99 8 AM Vj: Went grocery shopping because of bread and cottage cheese but buy whatever needed for them except egg; don’t know you like it or not. Sorry about that.
10 24 99 8 AM Sunday Shi: Bob greeted me at the door in a good mood. House is cold heat off again.
8:00 PM Sophie: Mom to bed she has eaten dinner. Rice bags hot. Dad up reading at table. He agrees with me that we are lucky to have such good help.- Even you, Shi! Vj- thank you for getting the groceries. I get them on Monday except milk on Friday too. I’ll get extra food to put in freezer (big one by washer) if you need to get paid back early, let me know. Oh. I’ll call to check about it as you won’t read this until Friday.
10 25 99 8 AM 6:45 PM Sophie: Dad seems happy. He has wet pants- probably doesn’t know it. Hope he changes them before next week!
10 26 99 8 AM Shi: You should see this. Bob is stacking apples just about done and they all fall down again hasn’t given up yet ½ hour later.
7 PM Sophie: We wrote a note to Merle because her husband died. Rice bags for both.
10 27 99 5:00 Sophie : If you want to really heat up the bed room and bathroom, open the front door and close the door to the dining room. My gosh it must have been 90 degrees when I arrived.
8:00 PM Mom on commode and to bed. Pills put up for the week Rice bags all around. His ahd hers. Seems to be better now that dad is not putting hot water bottles in microwave. Flash lights by bedside. Oops! Mom’s isn’t very bright.
10 28 99 5:30 PM Sophie: Cleaned Dad’s hearing aid- need battery? I think. No squealing sounds.
8:15 PM Put Mom to bed. Used commode in spot where she would normally turn to get in bed. It worked well there. Rice bags.
11 1 99 8 AM: Shi: A “Post it”, is attached here. It contains and ad for “New Strength Haldol” 100 mg long acting injection! How about that for a remotely appropriate Rx! The note in Shi’s hand is as follows:
I have a few days marked on calendar that I would like for Thanksgiving to be with my kids in Calif. Is this okay? Shi.
7 PM Sophie Sure, Shi, I’ll work something out. Just have a fine trip and come back safely.
Shi is going to be gone Wed Nov 14 through Monday Nov 29th. I can do Wed 24, Thursday 25, and Monday 29th. I’m not sure about the Sunday 28th. I may be still playing football somewhere on Friday, Saturday, and Sunday. Remember last year he went to Minneapolis. Shi, I lost the grocery list. I’ll come in AM to check with you.
11 2 99 8AM Shi: Bob cleaning up water in the kitchen; flooded; he must have spilled it. Melba up 8:30 washed, dressed, breakfast juice, egg, fruit, IB, (Instant Breakfast) ate all. Pumpkin pie in oven. Found water supply (coming from) under sink some where I can’t tell where.
7:15 PM S: Dad trying to get Mom in bed. She was in wet clothing. Very unhappy. Got her up on commode and washed up. Teeth brushed. Very happy now to be clean and in bed. Rice bags. I can see that now with day-light savings over, I need to come at 6:30. Dad reading at table.
11 3 99 8 AM Shi: Don’t forget to put meds up.
6:45 PM. Put meds up. 1 cup IB in milk and a piece of pumpkin pie J Brushed teeth- washed up- to bed- rice bags heated. Fed cats- there are cats everywhere- all colors!
Bob is losing the cat war. But more significantly, neither Shi nor Cat stimulate his ire as they formerly did. His ready anger has abated. Why? Because he is no longer mentally himself. His rage at life’s insults is fading, replaced by a quiet b and peaceful affability. The ‘handmaidens’ feed Cat by the side of the house. So does the neighbor. And Bob himself has provided half burned food amongst the ashes. Net result, yet another cat for the feeding station appears! And Bob is physically still capable, but pays little attention to it all.
11 4 99 8 AM Shi: Bob up picking apples Melba still sleeping at 8:30.
5:30 PM Dot: Dad- Asked if he could sing us a song- then went through
“Daisy, Daisy, give me your answer true.” It was a great moment as he sang it right to Mom. He said their neighbor Jack W
(from New Zealand) sang it & the accent tickled him. I was kind of annoyed at him because he was trying to dry a dirty glass instead of washing it.
7:30 PM Sophie: Oh, Well! Put Mom to bed. Looks good. Could not walk to toilet- commode next to shower. Rice bags for everyone. Vj can’t come Friday or Saturday morning. Her knee is bad- old injury acting up. Hope her doctor can help her.
11 5 99 9:00 AM Sophie: Vj not able to come until her knee gets better. She hurt it a year ago. She may be better by end of week, I hope so.
PM Li: Boy do I love these guys! Asked Dad what he wanted for lunch, pasta or soup- he said both! Gave them veg soup. Pasta, cottage cheese & fruit. Picked some grapes- both eating them.
5:00 PM Sophie: Li- how terrific. Put dinner on –soup- bean- left-over everything for Dad
8 PM Furnace making strange rattle noise. Dad checked- says it is fine… I think we should have it checked now. Mom to bed. She has had a ¼ inch round spot- brownish- on pad center both yesterday night and this evening- possible bladder infection ??? I’ll get cranberry juice.
11 6 99 Saturday 9:15 AM Sophie: Watch it ! Dad takes dirty clothes from green bin next to washer and puts them away. All is well.
6 PM Vj: Bob and Melba were eating when I arrived house is smelling bad because both the pans were burning on the stove. Give both of them cup of I B a bowl of ice cream a put clorox in the burned pans they both look good brush her teeth changed her clothes, give them rice bags. M knee is a little better now hope it stay like this. Melba was little slow when she went to bathroom. Melba had a medium BM.
11 7 99 8 AM Shi: Bob up getting ready for church.
7:30 PM Sophie: Put Mom to bed. All is well.
11 12 99 8 AM Shi: Big loose BM during nite. Watery BM 9:45 (today.)
5 PM Sophie: No more diarrhea. Beautiful Siamese cat- very friendly. Sits on front porch –fed- fed- fed again. No sign of Blondie. He has to be afraid of this beautiful cat.
8:45 PM Dad has Mom in bed. Pad put on: green one in case there is more diarrhea. Mom seems very happy. No sign general illness. Took anti diarrhea medicine back home – dad might give her too much.
11 8 99 8 AM: Shi: Both still sleeping. Front door wide open wind I guess. Bob very pleasant.
5 PM Sophie: Got Mom changed. No diarrhea.
7:30 PM Mom to bed. Mom gets red streaks from the plastic so I had to take off the big blue diaper. Hope she doesn’t have diarrhea again. Benadryl cream to red areas. Maybe we should stop the I B for a few days. Mom got the exact kind of diarrhea from too much Calcium. What do you think?
11 9 99 8AM Shi Bob up doing the apple thing. Melba got up to B R but went back to bed. I thought too maybe too much chocolate so will stop and see what happens.
5 PM Sophie: She was very cold when I arrived. Laundry room and kitchen windows were open. Dad must have burned something again. Started fireplace…she loved it.
8 PM Still watching TV in front of fire place. To bed c rice bag. SIMON- the (new Siamese) cat- He has frightened away all the others including Blondie. Cat food is next to garbage bags. Our drawer for cat food is full of apples as is all of back porch.
There are no Dragons here, no Villains. No one of these care-givers could possibly care for Bob and Melba by herself. No one of them is a super-hero, perhaps quite flawed in some ways. Collectively, however, they communicate effectively, and interact to do what is heroic tin helping this old couple accomplish the impossible, and live their last years in the way they hope to.
[1] See nwalmanac.wordpress.com/2010/08/12/musings-of-a-newsboy/
[2] Throughout, Wi and Sophie’s son, I, is a member of PLU baseball, basketball, and football teams. They never miss a game. One year the football team actually wins the national championship in their division.
Holding On
Holding On
The Melba Notebooks, Chapter XV
This is a quiet period. Bob is usually quite withdrawn. An exception is recorded below.
7 1 99 AM Sophie: When I arrived, Mom was eating the sandwich which they didn’t eat last night. Her oatmeal was untouched. She also ate a biscuit and H chocolate. Good BM.
1 PM Di: Both at table. Mom started to talk. Started taking pieces of mail in His pile & boy did he get mad. Kept telling her to leave it alone. IT WAS HIS MAIL. She just wanted the table cleaned up. I thought he was going to hit her tried to get her to come out with me or go watch TV But she didn’t want to do either. Found her a magazine to look at and things quieted down. (Didn’t hurt that Dad fell asleep.) While trying to keep peace my toasted cheese sand got a little toasted on one side. But OK.
5 PM Dot: When I arrived Mom was dozing at table. WOW! It is getting tricky here. Let me know when you plan to meet. I like the coffee shop- & I’ll come out any day (except Tuesday) after 4 PM. That would be good for VJ too. Balanced key Bank Checkbook. Paid bills. Did nails. Talked to Dad about stocks- I told him I would take the certificate to B of A. He was fine with it. Baked chicken & potatoes. Mom’s hair looks fantastic.
8:30 PM Sophie: Mom to bed. Everything pleasant here.
7 14 99 AM Sophie: Di’s Birthday!!! Mom ate Wheaties and banana and ch milk.
PM VJ: Wish you happy Birthday and many may more Di. Sorry I didn’t bring a card. Thanks for your kindness and sweet words. Give Melba a bath did her hairs and give them their lunch they both eat god lunch with salad a piece of toast and hot coclate milk. Both look happy otherwise everything is OK. Call me if you should have a meeting- my schedule changed- evenings open now. Love VJ.
7 15 99 VJ: Bob and Melba were taking nap on the chair when I arrived washed melba and dress her up give them their lunch Melba eat food Did the laundry and give Melba her pills. Thanks.
7 16 99 Noon Di. Dad was at table reading. Then he started messing with the stove & emptying hot ashes onto newspapers. No fire. But he dropped a corner of the papers and guess what we had ashes all over & he kept on walking outside threw kitchen. So there is dust everywhere. Mom came out to see what was going on. I let him clean up the biggest part while I finished lunch & dinner. Then I vac what I could. (Just my opinion but dumping hot ashes in dry grass next to a house doesn’t seem like a good idea.) A lot of TV dinners in freezer should use old ones first.
7 22 99 10:30 Sophie: Mom still in bed. No walker. Dad at church- back now at the table when I arrived. Mom washed- dressed fed breakfast. Bed washed and sheets changed- very wet- Mom now happy- Dad unaware of problem. Lawn mowed. Mom to bathroom Lunch- happy out side to weed some.
7 26 99 4:30 PM Dot: Ni & I both here for visit. All looks good. Trimmed hair & nails. Paid bills. Reminded Dad for the 4th time about heating up the old meals for Mom—Oh Well!
9 PM Sophie: To bed. Hot water bottle too hot and NO cover. Gulp! We need to make sure covers are on so Dad will not burn Mom’s feet. I went over this with Dad – hope it sticks- actually he likes the HW bottles sometimes asks for one himself. I will write on H W bottles- COVERS??
7 27 99 PM Sophie: I came to get Mom and Dad a pre-night snack of pie and ice cream. Gone! Bob said Mom didn’t want it. He ate half a pie! Put heat on; Mom had one terrific coughing spell- she was eating and talking about grandma at the same time. Dad very quiet- not unpleasant- reading at table- trying to look “all right”, I think.
Sophie’s observation is perceptive. Bob is aware he can’t follow a conversation, and has developed was to hide it from others, and perhaps from himself, by withdrawing. He answers any question brightly, pleasantly, usually with a ‘yes’, but immediately turns to a task, like a man who turns to work to avoid a home problem.7 29 99 Di: Sophie here getting Mom cleaned up and dressed. Dad outside in the rain without a coat trimming on tree with pruners. Why? Looked fine to me. Mom said she was cold. Heat turned to 70 degrees. Got dad lunch. Mom reading at table. Dad cut branches so people could see the cars coming. (tree at corner). Tried to get him to change his dirty, wet clothes but they were OK he said. The tomatoes still look great. They must like smothering w ashes !
Dot: Can we do anything to keep Dad from blowing his nose onto the floor? Probably not. Don’t walk barefoot girls. Paid archer group bill… thanks. Sophie- I paid M. Do you know where Bank safe Deposit box key is? We should check for other stock certs. Thanks-
7 30 99 Sophie AM: Bacon & eggs and cran-rasb juice. Mom ate it all. Listening to Fiddler on the Roof Dad is at church. Fireplace rope is gone- I’ll get some on Monday. Can’t tell what Mom had for dinner. Dad says he ate the whole blackberry pie by himself. Mom says it was sure good but can’t remember if she ate it yesterday or tonight…. Mom tells in me that mares eat oats and lambs eat oats little lambs eat ivy …etc. Dad just asked me did I know what the nail was in his gum. (he lost a crown) .We found the crown in an envelope in his office. He (I) will call dentist tomorrow- the nail (post) has been there for a month or so!
Dad has a dental apt. at 11:00 on July 1st. Be sure to take crown- on his calendar in his office. Mom wants to know if she is a Canadian. Looking more comfortable now that I pointed out she has voted Republican (even now by mail) since Hoover. She says only Democrats can vote non-citizen or dead. Cleaned Dad’s hearing aid. Mom ate 2 waffles c whipped cream. And corn syrup (old) and hot chocolate.
7/31/99 Sophie: Di, Dad has dental apt 11:00 tomorrow. Must take tooth.
After a long search, a replacement for Di is found. Last year when it became clear that Bob was not able to manage the bills, Dot convinced him to give her a power of attorney. She has exercised it lightly, asking him to approve checks, consulting with him often, and not interfering with most of his wishes, even when she disapproves. But the new caregiver decision is critical. His present state of ill controlled anger gradually has worsened. The next caregiver must be experienced and mature; someone who can handle some abuse. Otherwise, given our current civic hubris and governmental intrusiveness, Bob is likely to strike someone; an assault. He is at risk the ‘system’ will confine him to an institution of one sort or another; at risk of becoming a heavily medicated and restrained angry deranged old man.
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