The Bob and Melba Notebooks
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, but knows that it is upon her.
Melba leaves Bob emotionally. He may not sense this but he’s aware, she’s letting him go. 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. — 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 don’t fight her now. 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. Dot 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 Sophie 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. Sophie took Bob to the dentist. Ja called and talk to sophie. 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 H2O
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; Inst Bkf 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. want 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 tsp; 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: Sophie & 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, Dot 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 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 Dot brought some new shirts and pants. We plan a Salmon after a Father’s Day gathering- Ja, 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 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 .’
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. 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 about 1995, 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 who was almost laying on her trying to get back in her hospital bed. Really hard for him in such a small space. Got dry things on her and into the bed smiled and said thank you. I think this is where she should sleep.
Lu, sympathetic to Bob’s lonliness, tried putting the pneumatic mattress on their old double bed so Melba could sleep with him. But experiment failed. Each 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, even though they all see immediately that their chief concern is to help Melba, not Bob; and to protect her from his excesses. But Lu is tolerant and affectionate with Bob; maybe since he is no longer Bob, that makes it easy.
7 7 00 Lu: 3 pages of notes: Now that Lu has become the principle caregiver, she assumes a clinical command of the notebook. Frequently it contain solid pages of careful print-writing: the way younger generations write now, no cursive. It is boilerplate nurses notes, mostly about observations on Melba’s clinical condition, and Bob’s gradual improvement in breathing, his wish to sleep in recliner, and conjectures about those matters.. The entries reflect concern but are detailed and lengthy. So much so that I edit them, or sometimes euthanize them unmercifully.
8 AM Lu: Bob still does sound SOB but his feet look 100 % better.
PM Dot: Shi have you seen the white cotton
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 care 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 ongoing for a many weeks. Lu and Lo are full time. Occasionally another care giver relieves them, but it is so brief, and there have been so many caregivers coming and going 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 Caregiver 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 print 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 heavily 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 Sophie 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 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!
Chapter XVII The Melba Notebooks
Dad has been insisting for some weeks that before winter comes I go with him on a hike to a place we had been before. We take Rob, friend of his, and leave early because it’s a good distance to the trail head. My notebook entry that evening follows: 9 24 99 6:00 PM Ja: Back from hike. A beautiful Fall day. Drove to the north ridge at about 6000 ft , then up probably 3 + miles a pretty good climb, beautiful views. We’re all, however, glad to be home; very glad.
The day is cool but sunny. Dad and Rob and I hike the North Ridge, a nice trail, a gentle up-climb, shaded until one reaches the tree line nearing the glacial ice. Bob does well, slow, but steady, using that pursed lip exhalation he has had for many years; it gives him just a little more partial pressure of oxygen, helping his mine-dust scarred lungs to keep up with his inflexible will. He is in character, pushing on quite oblivious of those with him, preferring the mountain solitude to peopled conversation. By the time we reach the open ridge it is one o’clock. All his life Bob has insisted that he doesn’t need to eat or drink while hiking, and that does not change in this, his 92nd year. I know his ways, and am actually not certain he is wrong. Though the current dogma hikers and physiologists is totally contrary, I have too often seen today’s truth become tomorrows lie. But Rob is not used to all this Bobism. For the past hour he has been suggesting we stop and eat.
At 1:20 we find ourselves on a pleasant grassy saddle. The snow, just now, is hidden from view but we have watched it come and go from sight, as it moved ever closer. Behind us is a small hill that we have skirted; But Bob never wants to avoid the more difficult and upward path, and he spurned our wimpy choice to follow the trail voiding the unecessesary ridge climb up and down. Without comment, or a backward look, he mounts the hill, while we go round to wait on the other side. He approaches:
” Dad, we need to stop and eat here.”
“Alright!” with that familiar sour smile and look which says: “OK ladies!” he does not argue, but acts. Again, there is no discussion. We sit down and open our lunch, as he stands 20 or 30 yards away.
“Really” I say to Rob, “he’s very tired. If we both just continue here, he will join us.”
But no. He turns and looks up the near, and steeper, slope. Without a word he heads up the way he just came down. “Let’s eat”. I say. “You go back ’round the hill the way we came , while I climb up after him; we’ll meet you on that side, the downhill side. We won’t lose him either way.” And that is exactly what happens. I reach the top some ten minutes later, find Bob, and we make our way down the other side to meet Rob and continue on our way; but this time, downward, towards the trail-head below.
Like life itself, going down is almost always harder than coming up. Frequently Bob lies down for five or ten minutes at a time, falling soundly to sleep under his old distressed woolen lumberman’s cap, heedless of the crazed mosquitoes. I wake him to urge him onto his feet, each time with more difficulty. At long last we reach the car, passing Rob who develops knee pain and has to rest often. On the long ride home, Bob sleeps, but still refuses food or water, and wordlessly collapses as we arrive home.
Later I reflect more about the gradual loss of self that Bob had experienced during the past few years. Unable hear; to speak sensibly; unable any longer to hide from himself and others his caseous mind and lost physical capacity including the ability to drive. His home is no longer his; he has no power to make decisions there. Shi, the new caregiver, is the culmination of all that accumulated loss of what he has treasured above all things throughout this century: Independence. She is big, assertive, fat, all he dislikes in a woman. But now his likes or dislikes don’t matter. Shi Is. She does.
Suddenly it comes to me: He was planning to stay on the mountain that beautiful day, to walk out of life, Eskimal like, after reaching the snowline, or the highest spot he could. Would I have been able to interfere before nightfall? I’ll never know. I can’t help being saddened that his confusion and failed strength didn’t allow him to make his own way from the living. On that lovely day one more time, and one more way, he had lost his freedom. All that will be left to him in the coming months will be resentment, and anger. It will fade, but only because it is replaced by a quiet resigned senility.
* Five spiral bound Melba Notebooks, dated from 1995 to 2002, contain the hand written entries of numerous caregivers and family who make it possible for this aging couple, Bob and Melba, whose lives spanned the entire last century, to live in their home until their ashes are scattered in places meaningful to them. The notebook entries are the way caregivers communicate with one another, not only to help Bob and Melba avoid nursing home care, but to shelter Melba from the idiosyncrasies of her difficult but admirable and beloved husband Bob. This scene is adapted from one of the hundreds of episodes recorded therein. The Notebooks are Dialogue. They tell, often in moving or hilarious terms, of getting old and dying; of being a child or a caregiver to the very aged as they approach death. Names and places are altered, but the voices are genuine. Asterisks in the text indicate edited iterated informational material. Italics are the author’s comments
The Melba Notebooks, Chapter XIX
The following Ja entries are from his Standard Diaries:* All remaining entries are from The Melba Notebooks.
Thursday Nov 18, 1999 Ja- Sophie called with information on Bob’s flight to attend the Big Game between Cal and Stanford. (Ha! I expected the 100th Big game 2 years ago would be Bob’s last. But he never communicates much; this is the 102nd.) He will fly to Seattle, then to Alameda, where I’ll will meet him. She arranged for an escort to assist him at the change of flights, and will check his luggage all the way through. After the game I will leave him with the airline and the reverse process will be followed. As always, Bob doesn’t give a heads up about such things- But it looks like everything is covered.
Nov 18, 99 8 AM M: Sophie: Got some things arranged for Dad’s trip. Will call Dot tonight.
Tomorrow, Friday morning , to airport
Saturday 20, 21, Js’s and game
Sunday 21 return
Nov 19, 12 Noon: Shi: Came to relieve VJ. … Melba asking about Bob but knows he is at Calif. Melba reading & watching chimney sweep.
Nov 19, 1999 , Ja about 3:30 PM: At the Alameda/Oakland Airport ; I was surprised that Bob had his suitcase in his hand as he met me because the plan had been to check it. A lifetime of traveling the world with only carry-ons made that his preference of course. Somehow he had foiled the airline in that regard.
PM Ja We drove to Stanford across the San Mateo Bridge to Atherton, and El Camino Real. I had not expected to have much trouble finding a place to stay, but ‘no vacancy’ signs ruled the streets; so rather than fight it, under these circumstances,I just popped for the posh well located Stanford Park Hotel.
“He’s 91,” I thought, “and now unaware of my extravagance. I have this compliant credit card, and can indulge myself to treat him to the best!”
9:00 PM Ja: At dinner the waiter always first addressed Bob; after all he was a most venerable customer.
” My name is Rock, and Ill be your server tonight. Might I suggest, sir, the raw oyster appetizer? They are very fresh, served with wedges of key lemon, and our special Chesapeake Bay sauce.” At that and every subsequent suggestion Dad looked up pleasantly and responded enthusiastically. Brightly. “Thank you!”, or again, “Yes!” And so we free ranged through the salads, wine, rack of lamb, desserts, after dinner drinks and cappuccinos. Bob ate every bite, as always. I was pleased, but troubled because obviously Bob was on auto-pilot, all instruments failing excepting his motor skills, his automatic affirming verbal responses, and faithful appetite.
Nov 20, 1999, 1:00 AM Ja: I awoke to a persistent banging of the door as it was forcefully pulled against the safety chain.
“Dad, what are you doing?”
“Trying to get that damn light off.” He had noticed the bright light from the hall shining through the peep-hole.
“Dad, that’s the hall light. This is a hotel. They leave the hall lights on all the time.” He always was a hyper sensual being who slept nude. When he used to parade around that way, he was never shy about his well maintained body or proud manhood. Now he continued to stand there bare-ass naked jerking the door, unable to take the chain off. Then I did something monumentally stupid. I removed the chain and opened the door to show him the hall, as proof of my assertion about the hotel. We both went back to sleep.
2: 25 AM: I awakened to light from the hall streaming through the open door. Bob had removed the chain following my example. He was in the hall looking up at the long row of glaring bright ceiling lights. A good looking young man in suit and tie approached cautiously:
” Good morning sir. I am the night manager. How can I help you, sir?”
“I need to get these damn lights off!” The thin stringy body stood erect, dressed in wrinkled sagging 91 year old skin. Absently he covered his genitals with a hand. The left. But he remained fully focused on the manager and the infuriating lights.
Bob continued-“And who are you, anyway?” as in “What are you doing in my house?”
“I am the night manager sir. Another guest has complained of the noise.
“The lights are still on!”
“We keep the lights on all the time at night.”
“Well, I always turn them off!”
I was able to lead Dad back to bed, explaining again where we were. He was up at the door four more times that night, but I wakened immediately and he responded to my sharp interference readily; the last two times I merely had to remind him verbally.
Uncharacteristically, Bob slept in beyond his usual 6AM and I gratefully thanked each and every God and devil: I was in no condition to offend any of them.
But they all promptly failed me. Going to his suitcase, which no one had touched until then, I opened it to get his change of clothes. On lifting the lid I saw a syllabus for a neurosurgery conference, and a number of beautiful carefully rolled up saris, such as a well dressed East Indian woman might wear. I needed to look no further to realize why Bob was carrying his suitcase at the airport. Always the efficient engineer who traveled light, he had never checked luggage. On deplaning yesterday, he found a suitcase that looked right and took it with him.
The Stanford Axe had been stolen by Cal in 1902 and recovered by 22 Stanford students in what amounted to a bank heist, in about 1929. Bob was among them , so we sat with three other survivors of The Twenty Two, in the honorary seats reserved for them. Stanford won the game in fine form. Bob was quiet during the entire event, maintaining a pleasant but vacant smile, with no apparent excitement. In sharp contrast to his life-long custom, he did not enter into any two way conversations, made no comments, confining himself to ‘Yeses’ and ,’ Thank yous’, reserving ‘No’ only to deny problems or needs. Immediately after the game we returned the unfortunate doctor’s suitcase,and collected Bob’s without any difficulty. Aside from color, there was very little similarity between the two pieces of luggage.
Nov 21, 1999, Ja. I reminded the check-in desk attendant that Bob absolutely required an assisted transfer for the Bellingham flight in Seattle. Ignoring the lesson of the day before, I optimistically relied on the assisted transfer, and checked his bag through, feeling rather pleased with the whole visit. Although we had experienced some problems, we had concluded with success. But this would not not be the end the day’s adventure or drama.
Nov 22 1999 12:30 PM Sophie: Fixed pipes under sink again. Couldn’t fix sprayer without risk of major problems beyond my available plumb. parts. Mom has had so much trouble getting around tub that I used commode in hallway. It went well once I got myself organized. She needs something to hold on to- I used walker but she got afraid getting up.
2:30 Dot: To airport to get Dad- No Dad. Alaska said due to a reroute, he missed the early flight.
6:00 PM. Now we are still waiting . Mom ate a sandwich, cottage cheese, & peaches. She is nervous about Dad. The 800 number’s ‘Micky’ Noname says they transported Bob to the gate as planned but … they left him alone! (What the hell was the extra charge for!? ) Dad wasn’t there at departure, didn’t appear despite paging. They are worried. I should hope so! I told Micky Dad was in good health but probably wouldn’t hear a page. I expect they paged in Terminalese of course which no one can understand anyway. Mickey will contact airport police. I suggested checking the rest rooms.
7:15 Sophie: Leaving for airport) so Dot can go home.
8:30PM Ja: Hooray!!! Someone found Dad at the United (not Alaska) lost baggage counter, searching for his luggage. Late tonight he arrived in Bellingham, and has been spirited home to his familiar surroundings and to his old double bed by the side of his faithful but rather scorched lady. She wasn’t totally certain the old college hero hadn’t been sowing some (stale and moldy) wild oats. It wouldn’t have been the first time; among other things her old suspicion of an extra child in Filipinas is alive and well.
11 22 99 8 AM Shi Still sleeping; 8:45 both up Bob looks very handsome in new clothes.
4 PM Sophie: Fixed pipes under sink again. Couldn’t fix sprayer without risk of major problems beyond the capacity of plumbing material. Mom has had so much trouble getting around the ( corner of the) tub in her wheelchair that I used the commode in hallway. It went well once I got myself organized. She needs something to hold on to- I used walker but she got afraid getting up. Once Dad woke up he got lots of exercise turning out lights. He actually turned out the lite in kitchen while Mom and I were petting the cat. Mom thought that was rather odd. Thoughtful though: asked us to take the cat home if something happened to her.
11 24 99 8AM Shi, M: Both still sleeping. Good job Sophie you should get a job as a plumber. House very cold this morning heat is turned off. Bob and Melba up Bob talking to Chuck (Shi’s Significant Other) about The Big Game. Of course neither understands the other, or makes any sense .
6:00 PM Sophie:Dad has heated up turkey sands in micro- Mom won’t eat them. She is asking where they should go live. She was very happy after I pointed out that she has the money to stay here. The commode business is tough. She doesn’t want help. So I just grab her(hug style) under arms and lift and turn and down. Mom is extra alert tonight and in good humor. Dad slept all day yesterday. Mom thought that was rather odd. She again asked us to take Cat home if something happened to her! Here is a schedule for Christmas vacation.
M Tu We Th Fr Sa Su
AM Shi Di VJ VJ Di Shi Shi
PM Shi Di VJ VJ VJ Shi Shi
11 25 99, 9:00 AM: Sophie: Mom up- washed- dressed. Has had BM at night in bathroom. She makes such great attempts to clean herself up. Laundry done- Both fed. Dad has something with his throat. Perhaps Mom too. It is blowing and storming out.
6:30 PM: Put mom to bed at 7:30. It was hard to wash her up as Dad was in bathroom and she was tired; he said, incredibly, I am sick. What!?
11 26 99 9:30 AM, Shi: No one up yet. Fed Cat. Started a fire & got Mom up & dressed. Seems like they are well today. Surprise: Dad was very happy to see me when he got home! Maybe he is actually sick!
Melba remains alert, inactive, but communicative and contented, hospital -bed-ridden in her living room facing her old piano and an array of pictures of her children. Bob’s First Last Big Game, two years before, was followed by a time of increasing confusion, isolation, anger and aggressiveness. But he gradually has become more quiet and withdrawn, physically capable and cooperative but often no longer angry, but quietly senile. He always asks for a good night kiss.
Cat, Bob’s only remaining blood enemy- aside from Shi- no longer appears in the notebooks. The two old tomcats part ways not with glowering, yowling and rancor, but in silence.
*Events that aren’t described fully in the notebooks are taken from the Ja’s shelf of bound red Standard Diaries date from 1963 onward.
The Melba Notebooks* chapter X
11/20/97 8:10 AM Sophie: Dad called this morning at 7:00. Told me he was going to go to California. Left orders of things he needs done. WOW! He says Di is going to “put in a few extra hours.” Called left message. Dot must have just about driven off the road when she got her call. Mother in chair- couldn’t answer phone when I called. Took her cordless. Di not here yet. Dot can come tonight if needed.
Dot: 10:10 PM Can you believe the absurdity of this? When I got here Mom was sitting in Chair & her walker was in kitchen- so she absolutely would not get up from the chair- Very safe, Dad! I’m here for the night but am off to work at 7:30 AM. Hope all goes well Friday. I’ll be back for the night Fri. 10:00. Mom got up when I went to say goodbye. Gave her 2 aspirin to see if that might help her Stiffness.
Sophie: 10:25 PM Well. Dad’s in CA to see Dr Stamey and go to the Cal Stanford game. Friday he will see the Dr. Sat he will go to the game. Sunday he will fly home.
Li or Di here at 10:00
S will visit at 1:00
Dot back at 4:30
Melba ate breakfast.
Dot: 11:00 PM Went out for dinner- the wheel chair cart makes it easier. Watched “Sling Blade” with Ni. I told Mom I’d be leaving before she gets up (7 AM) but she keeps forgetting. I think she’ll be fine- She does keep thinking that Dad should be home any minute. Clothes for tomorrow are on the bed. I turned heat on at 7 AM when I left
11/21/1997 7:30 AM Di: Call from Jeff at SF newspaper re: AX story. He will call back.
The newspaper calls are the first Di hears of the Ax or that Bob is going to the “Big Game” between Stanford and U C Berkeley. I’m to meet him at the Oakland airport at 6:45 PM on the 20th to take him to his appointment with Dr. Stamey on Friday the 21st, and to the Big Game Saturday 22nd. We had last gone two years before. This time Bob didn’t mention, or didn’t fully realize he would take part in the 100th anniversary celebration of the Big Game. He is one of only four surviving members of the storied “21”, Stanford students who in 1930 recaptured the Stanford Axe from U C Berkeley in a caper that amounted to a bank robbery. Bob had ended up with the axe head under his sweater after the robbery.
11/22/97 10:00 AM Di: Melba confused about Bob. Ate about 2 waffles-cantalope, hot dog. Dryer not done. Clothes in washer also. She seemed lonesome followed me and talked.
11:20 AM Upset some- Wants to know why Dad has not called her.
1:30 PM: Sign (Another one in living room and bathroom.)
A sign is hardly transcendental in the ordinary sense of the word. But here it’s evidence Melba has been unable to reach the toilet in time; a sign that she was mortified and tried desperately to hide the mess. 1:30 PM this day, when the sign appears, is just shortly after the start of the 100th Big Game, i 900 miles away.
11/22/1997 6:30 PM, Stanford Ja: ( From Ja’s journal rather than the notebooks.)
We arrive without any problem despite the traffic, are directed to a privileged lane, skirting the parking area crowded with tail gate acolytes and RV-ers who congregate biannually for several days to worship the past, drown the present in alcohol, calories and dubious memories. Thanks to Bob’s exalted status we we’re directed to reserved parking close to the stadium entrance, then escorted to the privileged seats reserved for survivors of the ’21’.
At halftime the bands perform first. The Cal marching band is no doubt among the finest in the country, elegantly attired, performing faultless formations and music. The Stanford band, whether fearful of competition or hoping to refute their image of rich spoiled kids, fields a ragged crew of people in a variety of dress/ undress who play marches passably, and are as shocking and vulgar permitted.
The Big Game Centennial ceremony lasts about 40 minutes, for which the Stanford team was assessed a delay of game penalty declined by Cal. After fireworks and more band antics, fly-overs in biplanes, and a performance by the navy seals parachute team, the history of the big game and the axe is recounted at some length. Then the three 21 survivors are paraded around the field in a golf cart and deposited on an Olympic style platform at mid field to the ovation of the spectators.
Bob admits the day has been OK, except he was taken from his seat just before half time, and missed about 10 minutes of the game due to a delay returning! Stanford wins this year and I feel very fortunate to be with dad for his last Big Game. In the old photo below, Bob, somberly handsome, is in the back row second from right.
Involvement with the axe was a family matter. It was originally stolen from the custody of Bob’s uncle Leon at the second Stanford Cal baseball game, in 1897. He became a linguist, a poet, an artist, and an Art and English teacher who always shaved his head after serving with US Army Intelligence in Turkey during WWI.
* Five spiral bound Melba Notebooks, dated from 1995 to 2002, contain the hand written entries of numerous caregivers and family who make it possible for this couple, whose lives spanned the entire last century, to live in their home until their ashes are scattered in places meaningful to them. The notebook entries were the way caregivers communicated with one another, not only to help Bob and Melba to avoid nursing home care, but to shelter Melba from the idiosyncrasies of her difficult and beloved husband Bob. This scene is adapted from one of the hundreds of episodes recorded therein. The Notebooks tell, often in moving or hilarious terms, of getting old and dying; of being a child or a caregiver to the very aged whose death approaches. Names and places are altered, but the voices are genuine. Italics are the author’s comments.