Home Therapy

When Miranda was discharged Thursday Nov 24 she was neurologically only slightly better than a month ago. She is still unable to recognize her friends, uncommunicative and bed-bound, although she has moved significantly out of the vegetative state, by being more wakeful. Actually she has hardly turned the corner neurologically. It is hoped that 2 months of home care will help improve awareness and provide the vital link to more active rehab - a consistent sensible response to external stimuli.
Strauss and Pi (2000-2011)

Friday Nov 25 9.30am: She had insomnia - for six hours after taking the drug madopar at 6pm she had the opposite problem in the ward - sleeplessness. But otherwise she had settled comfortably home, the dogs tentatively smelling her. She had begun to sweat under the covers again, not being able to move them. This weekend's experience will enable me to resolve some comfort problems when the home nurse comes next week.
12 noon: Based on what we learn from the PT, managed to give her a hot shower and wheeled her around the house, for as long as the BP holds.

Go on Miranda, you can do it!!

Saturday Nov 26 12 noon: She had her first home visitors, but not after a soothing hot-bath at home surroundings. Looks like we are getting better at it as caregivers. Visitors tell me that she looks very relaxed and comfortable. The dogs get to give her therapy one at a time, but she slept on throughout their barks.

 

Therapy - dogs in queue, (CW)Princess
Skipper, Goldie, Acer and (Front) Gerry

Sunday Nov 27 9.30am: Lost my voice after week-long attack of persistent cough. So if visiting, please send me an SMS. She has shown a little interest when I bring the dogs to her - she looked intently at them. We have to stimulate her interest in the surroundings in enabling recognition. So she sat on a wheelchair, briefly in the sun today BP ok. Finally sat 4 hours. She seemed normal, relaxed, both her eyes focused.

Monday Nov 28 4pm: Managed to sit her on the wheelchair from 11 am to 3.45pm - the longest ever. But she slept through the visits of MGS alumni, MegC as well as former boss CT. Started to sneeze more frequently, excising fluid, which is a good sign? I am still jittery about suctioning her throat secretions. Vertical tolerance is good, but when will she shed her drowsiness is a neurological question.

For what are we better than sheep or goats,
If knowing God, lift not hands of prayers,
Both for ourselves and for them we call friends?
                                       RL Stevenson - The Holy Grail

Tuesday Nov 29 3pm: Got a shock this morning when I saw skin irritations around her stoma bag - the nurse-maid did not fully followed instructions to treat the skin before each change. Must make sure procedures learned from the nurses are followed. She's been opening her eyes wide at 8.30, 10 and 11 in the mornings. Now just before her feed a moment ago she was there - waiting for visitors? Noticed that the visitation schedules are not happening, as some might have thought that it only applies for the hospital. If you need to change the schedules, just submit a comment at the page on Visitation Schedule. We will sit her on the wheelchair this evening, when it is less wet from the thunderous showers. But at 6pm her BP fell from a high of 150 to about 94 after we sat her on the tilt wheelchair. Not a good day for vertical tolerance. Back to bed!

Faculty, ChemEng, NUS 1984, bonding with freshmen and sophomores, at our home in Chip Bee Gdns

Wednesday Nov 30 10.30am: Could not get her to shower today as my gout-pained leg cannot carry her. Maybe later, after the Home-visit PT sees her. She was ready for visitors with opened eyes when KP and CP(of A*Star) came, her boss. Then the MGS girls. Also noticed her stools are getting firmer and darker - a good sign of better peristalsis? PT came and corrected nurse-maid's physio again, as well as transfer. Learned more steps and sat her on wheelchair till 7.30 pm.

Thursday Dec 1 9am: The  home nurse came and corrected the nurse-maid's stoma bag management, as well as bathing techniques. Also taught her how to organize her feeding and bed-management. These she has been taught but again need reinforcement. Little details such as choice of bedding sheets and feeding tube care are easily forgotten. Although her muscle tone has improved (even the calves), her neurological condition has remained stagnant - uncommunicative, unresponsive during the wakeful hours. Chairman (her boss) had suggested a more active neuro-rehab regime with computer and robot interface - something which TTS hospital could have pushed for. This I will explore. At 4pm attempts to sit her up failed BP again - just like Tuesday.

Friday Dec 2 8pm: Nothing happened in the morning - not even visitors, as she snoozed through, even in the shower. But she passed the wheelchair test today, sitting for 4 hours. As she sat in the patio, her eyes looking darkly ahead it occurred to me that caring for her at home is like sailing through uncharted waters. Anything could happen and I have no doctors around. First there was the pale-yellowish skin around the stoma area. Fortunately the home nurse eased my mind, saying it is just some bruising by repeated pulling off the sticker at each change. Then the gurgling sound which disappeared when she was somehow able to swallow the secretion. Then today the look of anguish on her face, as if she was about to suffocate. An attempt to suction her removed little secretions and she fell back to sleep, leaving me mystified. So as I sat alongside her, I started a one-sided conversation about all these scares, telling her how helpless I was when she looked to be in difficulty, where I would not even be able to tell the doctor on the phone what her problem was. After a while the conversation became a soliloquy and I too fell asleep, my mosquito-watch duty neglected.

 

Masters (cum laud) at University College, London ?(1973)

Saturday Dec 3 10.30am:  The crowd came. But not before we managed to put her on the wheelchair comfortably, getting some morning sunshine, her visitors surrounding her. Her feet got a little edemic from hanging vertically. She however had good vertical tolerance, sitting from 10.30 to 2.30pm. But today she is niggardly about wakefulness, preferring to snore in contention. Could the damage to her thalamus be so extensive that she continues to not recognize anything for 3 months? In one disastrous stroke turned a top scientist into a zombie.

Sunday Dec 4 5pm: Have less time to update the blog at home. Busy since her 10 am shower, because one maid took leave. She slept through it to lunch when she was propped onto the wheelchair at 11.30 - then sat for 4 hours facing the garden, eyes closed. When the visitors came she hardly opened her eyes, but when they all left at 3.40pm she was wide awake for an hour on bed! Discovered her looking at the ceiling in the dark (the sky was darkened with rain). But it was on schedule - 4pm. Maybe that is a bad time for visitors, but good time for her!

Monday Dec 5 10am: Found out first thing in the morning that she had kicked her right foot at the edge of the bed into a large blister. Isn't the maid supposed to turn her every 2 hours? Maid didn't know till morning.  But at least she is kicking - albeit involuntary. There is another thing I've found by accident. She keeps her wakeful moments longer lying down than on the wheelchair. Tradeoff between wakefulness and vertical tolerance. It is now noon - time to feed, rest one hour and then wheelchair or shower. Her MGS friends massaged her limbs while Sis worked on her hands. And she snored on the wheelchair. Sat 4 hours. Around 8pm her doctor friends LC and M was stared by her in the face - trying to place them. She is starting to show interest as to who are the visitors. Could this be the first step to gaining consciousness?

Tuesday Dec 6 10.45am: KK and SP brought durians and I decided to surprise her. After we woke her I fed a sliver of durians on her lips. Smile! :) I am sure that was the first I've seen in 3 months. Sat on her wheelchair from 11.30 to 1.30pm serenaded by PL until nature calls for her stoma bag to be replaced. First time transferred her directly from wheelchair to commode for that and an overdue shower. She slept the rest of the day as nothing is happening - no visitors.

Wednesday Dec 7 9.30 am: Was a hot night, and Yanti began the morning by washing her face. As I held her, the season's atmosphere encroaches from the carols singing in the background radio. But she stares darkly at the ceiling. I can't help but heave away the cloud of sadness and despondency amidst the Christmas mirth. But joy comes with a hot shower and her friends at 11 am. At 1pm LL came and she stared searchingly at his rascal-like face, LC bemused. The home visit Physio came at 3 and showed some new workout. She retired to bed at 5pm, grateful for the rest.

Bench-work Test-tubing(?) as Faculty in Chemistry. NUS 1982

Thursday Dec 8 9am: Her eyes slowly narrowed, looking shyly at the sunbeam coming through onto her bed. She is in pensive mood, seemed to be thinking while her eyes dart sideways and up the ceiling. What is she thinking, if at all? At 10, we decided to sit her straight on the tilt commode until it is time to bathe. But before that we did some bedside physio. As I strained to keep her foot straight standing my mind goes back not two decades ago when her father was recovering from the stroke that eventually killed him. Then Miranda was the main caregiver, sometimes stern at her father not getting effective physio for mobility despite the pain. Now it has gone full circle, her's being a greater battle because of her lack of consciousness.  At 11 CYS visited and NN gave her a kiss/hug but she was unresponsive. On the wheelchair she is not even responsive to mine! SO and SR came at 1.30pm but left without eye contact. So we bathed her, transferred her to her cosy bed and her eyes popped open.

Friday Dec 9 8am: Got another scare this morning when her expression of pain and discomfort lasted for a while. Then she sneezed! This prompted me to plan for an emergency routine, in case of a real "code blue". Emergency bag, what to do if ambulance unavailable, etc. Be prepared! Later MC gave some aromatherapy hints to Yanti, but her BP failed. She returned to bed at 3pm without showers. Later she warmed up to her MGS juniors who came for a night visit.

Saturday Dec 10 10am: Some friends and visitors told me they had dreamed about her being normal again. I too had vivid dreams and even recorded them[FallenPillar.wordpress.com ]. I know readers of this blog could be believers or unbelievers in the Almighty. If you do you might have to wrestle with Powers of Darkness - it comes with the territory, so to speak. Even Mother Teresa had her "horrors of the night". The other night I felt the urge to pray for Miranda's protection. I knew exactly the one standing there in my dream was the Adversary. Attacks come most in our moments of weakness and I cannot think of any other time with her that we are as weak as these days. This morning she must have felt perky after her showers, because her BP stood her up for the wheelchair, where she's been sitting since 1pm. Kicking often now, she sat 4 hours facing the lawn.

Sunday Dec 11 11am: Another gloomy morning when she awoke with glassy eyes. She seem to enjoy the hot shower from the look in her eyes. Back on bed my attempts to cheer her was deflected, as she often looked away after a brief eye-contact. At 1 pm, when sitting upright BP dropped from 150/84 to 79/59 - confined to bed today!

Monday Dec 12 2am: Got to hit those anti-inflammation pills again after a gout-induced dinner and caught her opening her eyes in the small hours. Earlier in the evening Si got the same scare as me on Friday morning - an expression of anguish and pain that lasted a few minutes. She couldn't do anything for her but to cry. Even a nurse or doctor couldn't. What do you do with an uncommunicative patient with normal vital signs having a look of pain and extreme discomfort? Guess there was nothing to do but pray for us lay people. At 10.45 this morning, just as I was complaining about the doctor's medication that makes her sleepy almost 24/7 she opened her eyes for one full hour.

Tuesday Dec 13 noon: Heard her call out for the second time (the first the nurse heard). This when we put her down on the bed a bit roughly after transferring from the commode, or after she did a deep yawn. She also improved on her swallowing - coke or water. She was introduced something sour (last week was durian), like yesterday's strawberries. Her revised medication is starting to allow more wakeful hours. Sorry for visitors who did not have a chance to interact before, as I only discover (thru a TCM doctor) that baclofen reduces wakefulness. For us, I do wish there were less trial and error, but it is.

Wednesday Dec 14 noon: There is always things that want to be done - now my other maid has to leave because only Miranda can renew her work permit, by Christmas. But maids are not forever. May be a good thing. So now I am home-bound doing house and keeping dogs. Meanwhile had to pack the expiring maid off and look for another. Miranda is now more wakeful because of reduction of the medication that had made her drowsy. The PT will work on standing her up today. How exciting! At 3.30 pm she half-stood on one leg, supported by us. But it will be some ways to go to strengthen her legs for support. But mentally? She is still not fully conscious even with eyes open.

Thursday Dec 15 noon: Her ears cocked, listening to the Bible DVD playing Luke. At 7.30am, friends who dropped in said she is more alert. But no signs of recognition, smiles or facial expression. Just curiosity. Her sis-in-law tried to stimulate her sense of smell (and taste) with various condiments. Seemed unimpressed. However she had an important visitor today: her mother has been in complete dementia for some time now. But they do not seem to recognize each other - yet. Even when Miranda was married her mother used to hug and kissed her. On the wheelchair her kicks have increased. Memories of her National Netball team-work? All Netball photo credits to PC:

The 2nd World Netball Championship (Perth 1967) when diminutive Singapore girls was bashed to 8th place. Miranda (4th from left) came home on crutches.

Friday Dec 16 8am: Came back walking the dogs to hear her gagging. An attempt suctioning her didn't do much (wasn't so good at it either), so had to sit her up and thump her back - the grandmother's cure. Hope it works...but it didn't. Turns out that maybe she is just exercising her vocal chords!! At 2pm her old Dunearn hostelites came and waited some time before she greeted them with her eyes. More condiments sniffing at 4pm (and tasting), then back to bed.

Saturday Dec 17 3am: Found her kicking left leg lodged in the bed side-rail. If the dogs had not woken me for their night wee I wouldn't have rescued her foot. A cool Saturday to sit for 4 hours near the lawn, entertaining visitors from 1pm. More visitors came to her bed at 6pm. Later in the night I was overcome with sadness and decided to talk to her. She responded apparently listening intently to my complaint, eyes didn't leave my face. She opened her mouth repeatedly, but no sound. But I knew she was trying to communicate. Maybe she was trying to console me.

Sunday Dec 18 6am: I felt better this morning. A good cry is therapeutic. She had a slight fever. Have to be careful there. BP too low to sit in the morning. However after 4pm her BP held up to sit upright till 7pm. Ended the day with good PT workout. No visitors except family today.

Monday Dec 19 1-5pm: Her MGS and NUS classmates came singing hymns and
carols while she sat sleeping(?) in the wheelchair. But being such a wet day, she might not have enough of vitamin D.

Tuesday Dec 20 4.30pm: Nothing happening more than the usual sitting out. However there is one small change: she is more sensitive to touch now. In the past touching her will not wake her but these days she will recoil as if rudely awaken if her legs are touched. Then sometimes her eyes will open.

Wednesday Dec 21 9.15am: Heard her cry out at midnight. More like a loud sigh that I could hear upstairs. The PT will try to stand her on both legs today. I am excited! Wish she is too, but she is still unaware. At 3.30pm, she was half-standing on both splint-strapped knees - for 15 minutes. I was wrong. She looked thru it all with both tired, half-opened eyes. At 7.10pm Yanti by herself transferred her from wheelchair to bed with little help.

Thursday Dec 22 11.40am: This is perhaps the largest group of visitors to bring her cheer - 14 members and staff of BTI. I think she saw all of them but not sure how many she recognize. Wish she can eat all those chocolates and goodies! And see the quilt of about 300 names? At 5pm JG came dancing but his antics were not recognized, though she looked and looked.

Friday Dec 23 noon: We have no children but Miranda's sickness taught the frustrations of having one. The gush of urine coming immediately after a freshly changed diaper and the bed-sheet gets soiled the instant it is changed. We started practicing her standing next to the bed, both knees locked but too much vertical motion could also cause seasickness and queasiness. However the vertical stretch is worth the vomit. Later in the evening more than 30 people came to cheer her with carols and feast in her presence. As before, she loves seeing people enjoy food. Thanks for the stimulation!

Christmas Eve 6am: Early this morning as my long shadow loomed over her sleeping body I gave her a fright. She convulsed and her eyes popped open. Then they settled. She must have improved because a vegetative person doesn't get surprised. However her swallowing is still primitive and my lack of patience has caused her to choke. 4pm and she went for her first outing - wheeled to her father's house where she spent her post-teenage years - this old 'barn' has been renovated.

A Christmas Prayer - that she be made whole again.

Christmas Day 6am: Try to eye-contact her to wish her, but they looked transfixed far away, large and round. Her throat must be dry as bones as she breathes mouth opened all  these months. Good chance for swallowing exercise and wetting her throat. 8pm: Its been a quiet day until her family came to be with her in the evening.

Boxing Day 2pm: Nothing to do and quiet so wheeled her to brother's home up the road. She slept through the scenery which is supposed to stimulate her memory. Rats! It must be the baclofen medication again making her awake in the night and sleeping the day. There she had Fanta for swallowing practice. That's supposed be a Christmas treat?

Tuesday Dec 27 5am: Her loud sigh woke me - she must be getting bored, lying there looking at the ceiling, being such an active person. Making funny faces and slapping her cheeks does get her attention but not for long. Her pastime if not sleeping is a long transfixed gaze to her left. So her higher neural functions are moribund. Her limbs respond in primitive lower brain activity reflecting the damage to the thalamus region. I just wonder how long and how much it is going to take for her to come to. Thought about it and decided that just surviving this experience may not be enough - I have to rise above it. Overcoming this has to be special.

Wednesday Dec 28 8am: She looked refreshed this morning. We look forward to another new therapy lesson today. With eyes closed there is little chance to engage her brain - we must do so more with external motor stimulation. 4pm therapy ended with nausea - too much vertical movement after lying long in bed.

Thursday Dec 29 11am: Before showers noticed she has dark rings around her eyes. Also she has not been taking her regimen of vitamins, even before her stroke. Ginko for sure will be resumed. At 2.30 MS and AW, her sparring fellows from A*Star visited. Though eyes closed and head drooping she was drooling. I wiped her and told her gently that it is alright as she is sick. She cried.

Friday Dec 30 6am: She is definitely more aware of her environment. Once when I walked in her door she opened her eyes. Or when I lifted the bolster her head appeared to avoid it hitting her.

New Year's Eve: 2011 - a year to remember or to forget. Lost 2 dogs and nearly Miranda. Now her brilliant mind is just a broken portion and her body lies stricken. Pi (the dachund) has left a hole in our hearts too. As we look forward uncertainty rules the world economic system. Annum horribilis? Hopefully 2012 is better. If not it may be harder to find a worse description. So I took my clubs and strolled the fairways where Miranda used to de-stress from her day with me. The memories flooded back. I recalled the greens where I struggled to putt and the bunkers afflicting her, or her finding my ball hiding in the rough. Even the time when she dropped her hand-phone or keys. On the fifth I did a hole-in-one. Wished she was there!

New Year's Day 8pm: She's more wakeful than asleep today, probably because of NY visitors. Her head invariably turns to her left and when I place my palm on her forehead she closes her eyes in comfort. I think she is ready for healing. Just that as it is it is such a slow process. One grain of sand today.

National Netball Tournament Winners (1965). Miranda at back row (center) was barely 17 then.

Monday Jan 2 11am: Pastor S and Sis H came with CK to pray and lay hands on her (I didn't know this when I laid palms of my hand on her forehead N Year's Day). For 20 minutes of exhortation and singing, she looked at them with fully opened eyes. So if you believe in the Bible, you'd believe in the healing reported therein as well. Miranda wasn't frightened or scared - just curiously looking and listening - then went to sleep.

Tuesday Jan 3 4pm: Nothing happening today. Miranda must be bored stiff. The whole day to herself.

Wednesday Jan 4 4pm: So the PT came and while revising her stand, decided to try remove one knee brace to straighten her leg. Then she stood, almost completely on her legs (of course with our hands steadying her). For once the pillar is now up, momentarily.

Thursday Jan 5 noon: Caregivers take care! Both me and her other caregiver (Sis-in-law Irene) had accidents yesterday. She tripped and fell while I walked into the edge of a door. Miranda had to stop her vitamins supplement as we found hard urine crystals this morning. But the ship is still steady and the shipmates scrambling. Today the other maid should arrive, so that I do not have to babysit the dogs thru' the night now. We also have to purge the Rhyl's tubing too (with coke!) since it is almost choked with vitamins.

Friday Jan 6 9pm: The visitors have returned - but Miranda still could not place ex-staff from CNPR - the center she started. However her swallowing has improved - hopefully by 19th Jan the hospital staff can discard the Rhyl's tubing. It would have been 2 months. One caregiver (sis-in-law) is now under observation for her fall. I'm still ok, though a little dazed. Thank God for maids! Without them our economy is threatened!

Saturday Jan 7 noon: Something interesting about the dogs. Skipper (the Sire) who used to sleep with her is a bit unsure of himself.  He used to guard Miranda against me. These days he changed loyalty - she used to be "top dog". Now it is me. The rest fall in line.

Sunday Jan 8 9.30am: We put in lots of effort to keep her tone - literally hours of physiotherapy, massage, moving, stimulating much to Miranda's discomfort, even singing and touching. Her body (skin, weight, etc) looks healthy but her left brain is still inactive - really discouraging to see her eyes still transfixed in coma, looking dead left. People outside will ask me "How is Miranda?" and now I am even afraid to tell them the truth.

Monday Jan 9 9pm: Four groups of visitors today. She made some effort to stare at their faces. The only direct brain stimulation I have for her is through her eyes, figuring out faces. But not for long - her dominant right brain now will skew her eyes left. How much sadness can one take?

Tuesday Jan 10 2.30pm: She seemed happy today. I can tell by her eyes relaxed and blinking rather than the large, glassy look into infinity. It is not Miranda to not watch TV at all. Therefore I conclude that she is totally deficient in visual memory related to the left temporal lobe damage.

Wednesday Jan 11 4pm: Noticed that she has been getting more seizures lately. Not sure these daily 4 or 5 total body spasms lasting hardly a second requires immediate medical attention. Spoken to the neurosurgeon and preparing for re-admission next Wednesday. Meanwhile hoping that it doesn't get worse. Miranda will be spending Chinese New Year at the hospital next week.

Thursday Jan 12 3.30pm: Had a consultation with her neurosurgeon and finalize details on her re-admission for review. This review is important as she has not been medically examined for 2 months comatose at home. It will determined a) whether she is fit for neural rehab b) whether she should proceed to have the cranioplasty and c) whether her swallowing is good enough.

Age 17 (front, right) she already had international friends. 1965-66 Pesta Sukan Netball Finals, between the Singapore National team and the British housewives.

Friday Jan 13 10.30pm: The greatest benefit of visitors is when they stimulate her mind to try to recognise them. There seem to be no other direct stimulation to her brain, other than the usual therapy. This last week she has little (or no) aroma-stimulation.

Saturday Jan 14 4.30pm: Had to struggle hard on the decision to proceed with cranioplasty or not - risk of infection or bleeding about 1 in 12. Doctor friends say no - let her continue neuro-recovery nicely until she asks for it. Yet I know from experience handling her that an accident on the scalp that might hurt her brain is likely, without a protection. Neurosurgeon said it is purely cosmetic, while the rehab doctor said it is low priority. My gut feeling is that most of us will not go through life with just a skin covering our brain. So it is a question of doing it on 25th or postponing it months later, when she becomes stronger. Get to the bridge first? 18 January, 2pm.

Sunday Jan 15 9pm: The injured brain does bizarre things. This is the second time I noticed her wide opened eyes oscillating from right to left, like a type-writer going on furiously. I asked the neurosurgeon Thursday but no answer. This is the kind of moment that you'll wish that she'll be better off dead. I already have many moments like this. Nothing I can do to ease her. I can only do so much. But we'll see whether next week's consultation will explain it.

Monday Jan 16 9am: I'm putting up this rough daily sequence of events in the visitation post for those who want to know what is the best time.
6 am First Feed (6 liquid feeds a day at 3-hourly intervals) - you can still talk to her.
7-9.30 am About 2hours of on-bed physiotherapy after 2nd feed
9.40-10.15 am Vertical Physiotherapy and massage
10.20-11 am Shower and colostomy bag management
Noon: 3rd feed and rest 1 hour - Yanti takes break
1-4pm or 5pm: Wheelchair time and sunlight stimulation (feed at 3pm and 6pm)
7pm-10pm Night stimulation. Last feed at 10pm, last turning at midnight.
(Miranda sleeps thru most of the stimulation, I take my break from 4.30pm)

Tuesday Jan 17 3pm: The nystagmus (brain pathology effect described Sunday) when she looks right is reducing. Also her seizures. Googling shows that the drug that makes her sleepy whole day also reduces it. We certainly have a few neurological questions to ask before she proceeds to surgery. She's happy today! I can tell when she shows part of her teeth with the mouth closed.

Wednesday Jan 18 noon: She enjoyed her usual therapy and showers today. She is used to this routine. Tomorrow we do it in the ward (13B Bed 16). Routines are not forever. In the next hour we will initiate an attempt to give Miranda back her usual face and skull - provided it does not threaten her recovery.

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