Letting Go

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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!

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