Cheering the Right Brain

"Oh dear I can't find your left ear!  Don't tell me the surgeon...", I exclaimed as I struggled to plug the left audio on her. She gave a faint smile. These days there is nothing much to do except to cheer her up as just looking at her deformed head can depress you. I also found that care giving out of coma must always find new activities - just like a child developing her faculties all over again. Take music and humor - they are universal that a vegetative state might even relate. Music have been known to make plants and cows happy. Then there is a need to promptly help moving the bowels at consistent times of the day. Important to re-develop primitive functions of living. Becoming creatures of habit again is so vital to our cognitive well-being. I'm hoping the posts can become more cheery. Despite the truth.

15 Jul 6 pm: Probably entering a difficult phase - she's groaning often out of frustration and there's absolutely nothing one can do or even understand the words. Sometimes I try to avoid her because it seems harder to stay and feel hapless. Even the maid had to sleep in the hall to escape the nightly complaints. But so nice to see her doze off - sometimes up to 24 hours.

25 Jul 2pm: So the prolonged periods of sleep and stupor is due to hydrocephalus, a potentially damaging condition of excess brain fluid. Now watching and pray that the shunt will do its work of balancing the flow. Had previously reluctant to have the VP shunt inserted.

14 Aug 2 pm: Two weeks of chest congestion after catching flu. The medical review today threatens early bronchitis. Could be fatal if not watched for infection.

25 Aug 9 pm: She had always been remembering birthdays of family and friends organizing dinners and gifts. Have a happy one today! Miranda!

(1953)

31 Aug: Still visitors should be protected from her coughing and chest congestion.

<End of Post>

Tough Love

"Have we given our all against a relentless storm? Have every oarsman broken their backs as they strained  to steady the stricken ship? On and on the endless days riven against rocks, bitter wind and biting rain. The spirit tested to submission by the giant waves, but unyielding to the last breath the tempest must be stood. It must pass and we will overcome." (YKT - Collected words)

"Go on - cough it all out!", she stated firmly to her father retching away in his last days. Those days were triple duty for her - starting a new Institute, lecturing and teaching at the University and shuttling back and forth caring for her father at the convalescence center, besides friends and church. Then when he expired there was visible sadness but she turned to me saying softly it was probably best for him. She would even do the same for my mother! Over the years we survived at least half a dozen dachshunds - all equally dear as children to her. One time Hucky was slipping away age 20, being unable to recover from a festering wound. "Hucky, if you have to die, please let it be this week, because I'll be traveling soon..." That night Hucky expired in her arms. Charis, Sweetie, Sassy, Strauss, she had never let anyone go except in her arms. Then she'll say to me, "Death seems so final..." But everyday I keep thinking - what next can I do for her? How can I make her move her eyes and head? How can her weight transfer be improved during physiotherapy? She doesn't like to stand so can the maid, who is a shoulder shorter, do more to stand her (she's dead heavy), or where else can I take her around the house? I understand a team of doctors, specialists and other luminaries met regularly how to keep Singapore's icon (LKY) going as long as practicable. But for Miranda I am the team. When things are left status-quo, she will surely slide downhill. Comfortably lying in bed is her worst enemy - limbs and lungs weaken with lack of use.Then someone might wonder whether does Miranda really need all these? I do.

 2009: Pi was the "smartest" dachshund on this side of the globe. Her death in August affected her visibly in 2011. Infected by dirty water.
1 Apr 2 pm: This blog is about her - but I am sustained by prayers how to keep a sane mind. Really kept by the concern and prayers of many who read this blog. Inexplicable sadness makes one want to hide in a cave forever. God must not intend for us to have prolonged sadness. His plan for eternity is quite the opposite.

18 Apr 10 am: Getting stronger and harder to resist her tone during physiotherapy. But she must have given up trying to speak. Maybe later.

30 Apr 6 pm: She will look at you if you speak - she had never been able to engage her eyes before. But with no feedback you cannot tell whether she understood you. Only then will the rehab hospital admit her. Even the speech therapist will be doubtful of her swallowing.

31 May 12 pm: End of Post, No changes until the Next post

Steady State Vegetative

No man is an island, entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, Europe is the less,...any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls, it tolls for thee. - John Donne (1839) 

Hearing of someone succumbing to coma made me realize that Miranda's days are numbered.  Longevity does depend on our conscious brain pushing the entire body along in health. But what is the point of those vegetative years? That's a hard question. The easy answer is that long illness, at any age, is not uncommon and arduous experiences may be long-term good. But that is not an answer if, all of a sudden, it happens to you. On hindsight some may prefer abrupt termination, such as in an aircraft crash. We do not live life based on hindsight. We cannot. But it is vexatious to us who left the door ajar in the faith that God may do a miracle. We cannot turn the clock back on a bad outcome. I can't escape the occasional guilt that I perpetrated her current zombie condition. Damned if I didn't proceed with her life-saving operation and damned if I did. But the former would have haunted me the rest of my life wondering  "what if?" No choice - just keep faith. Then as our lives get drawn down with time, keeping faith is getting harder.

Saturday Jan 31 9 pm: Today is just like any other but it would be 34 years we have been together. Getting more sunshine, and vitamin C for her skin blisters...

Friday Feb 14 3 pm: Blisters all over - is it Bullus Pemphigoit? The open sores should avoid visitors. Quite rare, attacking sick elderly.

Wednesday,  Lunar Year eve: So Miranda was warded yesterday at Skin hospital with bleeding welts over a third of her body. Awaiting results of blood test and skin biopsy. Cradle bed care for possibly a week.

Monday Feb 23 3 pm: Her numerous scars were starting to heal and allowed to return home from cradle bed care. But one week of lying in bed means she would have to restart softening her rigid limbs again by physio. Lost 4 kg of fluid.

Friday Mar 6 1 pm: So tests confirm Bullus Pemphigoit,  but 1 week of hospitalization had weakened her considerably. Back to the hard work of strengthening her posture and breathing. The review today shows she has to fight the autoimmune disease for another month.

Saturday Mar 14 1 pm: Her skin condition prompted a daily dose of sunshine daily, when for the past years she had been convalescing in the air-con shade. Tried to excite her for all the warm felicitation of her 25 years work at BTI, but I doubt she even recognize herself in the photograph. Maybe next time.

Saturday Mar 21 7 pm: I think she's happy to be surrounded by people although I cannot verify. Her inability to speak greatest source of sadness.

Friday Mar 27 11 am: We buried Skipper today. With Pi he had been Miranda's constant companion at night and had been confused since her stroke. Both had bled from the stomach - Pi had amoeba infected dishwater and Skipper a ruptured tumor. I brought him to say goodbye but she was fast asleep.

<End of post> Next:  Tough Love

Groaning, Talking, Frustrating

Her groans are an attempt to talk but she does not speak. It has been said that Steven Hawking's brain works at 200% while his body lost 100% to ALS. Conversely Miranda may be fitter than a couch potato, with the TV always on to stimulate her senses. With only half a brain much of the operating software for her body functions is impaired, despite a daily rigorous physiotherapy. She even seems to lack linguistic memory and we have no idea which part of her brain is recoverable, if at all. Her associates once called her a live wire. Can you imagine how frustrating a dynamo, possessing an active mind and a highly energetic life, staring blankly into space for much of the day? The stage of whether she speaks or not is crucial. Even a yes-no response would be encouraging. If not she would still be in vegetative state. That means I'm still responsible to decide for her life. Dreadful.
What can one take away from such life-changing debilitating experience? We are born into the world with nothing but our tiny physical bodies. As we grew we also deteriorate to our deaths, some of us making bigger dents in society than others. This illness is an affront to our mindless accumulation of wealth, fame or assets. I knew that but then only in theory - Miranda practiced it. The lives she touched and relationships remained from so many who came to wish her well and others who think of her recovery.

Thursday Nov 27: Something to be thankful for - she's starting to swallow more. Pray that she takes enough to have her meals without the feeding tube. Then she can exercise her gums.

Friday Dec 5 8 am: We have a problem. Due to the surgeon's oversight a hole was made in her gut to remove waste when she first went into coma. Now the colostomy bags were changed so often that bleeding sores have multiplied around the stoma. But it was a blessing in disguise for the last 3 years. Just have to manage it until she recovers her consciousness to request for toilet breaks. 

Wednesday Dec17 5 pm: Last 2 weeks of dealing with waste management. Now to encourage her to make eye contact and to respond to touch. She still cannot turn her head to focus on visitors. 

Christmas Eve 9 am: Spasms and epileptic fits - is this bad or a good sign that the brain is trying to restore? Seeing her bravely going through it can bring tears. Back on the nerve tablets. May the blue Christmas be cheery. And the New Year better.

Saturday Jan 10: Ever since the new year she is struggling to sense the surroundings, crying out at night. But still vegetative, she is not able to eyeball anyone around. 

Friday Jan 16 Noon: Pray that she continues to improve internally although she appears to be inert externally. That she can begin to sense the right side of her head. But I think she's enjoying her exercises.

Tuesday Jan 20 1 pm: So yesterday I decided to introduce the dogs to her, whom she loves like her children. She regarded each one in turn, but the attention span was brief, both ways.

Saturday Jan 24 1 pm: Sleeping by day and groaning by night, what is she saying? But at least she groans. She communicates by her eyes, so I believe that visitors nowadays will connect also, if you look straight at her.

<End of Post>  Next: Steady State

Time and Space

Bald Eagles, gibbons, wolves and schistosoma mansoni (worms) - what do they have in common? They mate for life. When Miranda first returned home from the hospital they did not recommend her for neural rehab, simply because it required her to be conscious or communicative. Three years hence and she is still not ready. But the brain needs inputs to recover - just like a growing baby. Every day, and possibly for the rest of her life I wonder what else could be done - to improve her sense of time and space. Every time her head turns or her eyes look around is the chance for her brain to restore, ever so little. Everything her palms touch or when fingers clench an occasion arise for her motor neurons to become normal again. When she almost fall from exercises or transfers her cries of anguish are useful feed-backs to her brain function. I must also be careful whenever she chokes on fluids, but shocks like that are fodder to the brain. Only recently did I realize that we must seize these instances to help her recover consciousness. Care-giving is not just about making patients comfortable - it involves aggressive awareness of things we all take for granted everyday. It is easy to let days, months or years pass, expecting her to heal herself, even if some are consciously praying daily - something proactive can and must happen. I know if I slack off and leave things to the maid - nothing active will happen and Miranda will just fossilize. Pray that we must always remain alert, in everything we do in life. If not we are already dead.

9 am: More than ever now is the time for visitors to touch and eyeball her for attention.

Sunday Oct 12: 9 am: Have to get into the habit of appreciating simple joys in life - like seeing her pleased when easing the bowels regularly and for me - just getting a good night's rest.

Tuesday Oct 21: 2 pm: Have to keep hoping that she is still around. Easy to give up now.

Friday Oct 31: 10 am: Yesterday she could acknowledge visitors in her line of sight in her own way - by moving her jaws. Her eyes are more alive but she will not utter a sound.

Tuesday Nov 4: 2 pm: Legs active as ever. Will she be able to again move around like the day she first got her driver's license in her father's Ford Anglia? Not without her motor memory.

Tuesday Nov 18 1 pm: With the rigor of her exercises I think she is fitter than a couch potato. But with only half a brain maybe the other half can take her to consciousness.

<End of post>  Next  - Groaning, talking, frustrating

Enduring Strength

"When I'm weak then my strength will be perfected"

Elsewhere in the Bible the Apostle Paul also states that his spiritual weakness made him lived like dragging a dead body around. But Miranda is not dead -  her Spirit is alive and well, she listens attentively when someone prays or read to her. If she has her mind she would do whatever it takes to end the seemingly unending burden of her illness. So even if she is not completely conscious I should take courage. And remain strong with age. But age has its weaknesses. Sometimes we need superhuman strength. Like this last two weeks of Islamic holidays for the maid. We become more creative when short-handed. Like transfer single-handed.
8 am: Still groaning or trying to express something.

Sunday Aug 10 2 pm: Tenacity from Adversity - two weeks of lone combat. There are no stock answers to to the daily obstacles - all your years of preparation spiritual or not seems mostly irrelevant, just have to get on top of problems. Whether to steady her wobbly legs, clean up the mess from a broken shit-bag at midnight, or change the bedding unaided, smelling from diapers swollen with urine, dragging her body from bed to wheelchair. Most of all need constant eye contact to keep her conscious of the real world.  But so many invisible hands at prayer and supporting. Can almost feel the encouragement.

Sunday Aug 17 10 am: Inexplicable sadness. That engulfed me this morning. I had dream of seeing her well again holding a sketch pad in her hand. "I want to experience what the resurrection of Christ is like", and she proceeded to sketch lions and other animals. She was not good at drawing. But love animals. I woke up depressed. When you lose someone that close everything else pales. Amazing that people can live themselves to death and yet not notice the depth and intricacies of our lives.

Monday Aug 25 8 am: Happy 66th! If only she would say what she wishes for.

Thursday Aug 28 9 am: Well-wishers, grateful thanks - for your visits especially, including A*Star staff and chairmen. You don't know how much a fillip you've given to a silent, odious life of care-giving. I'm sure Miranda felt it in her own way..

Monday Sep 1 noon: Found out how to reduce bed sores and fungal infection for comatose patients - transfer at their urine cycles. 5 times a day had to shift positions from lying to seating and bed and clearing the bladder at each shift. Need strong arms and backs for lifting. Three years to this day of due diligence. What is the meaning of this life?

Monday Sep 8 8 pm: How else can I stimulate her mind other than standing her up in 3 hour intervals and moving around the house? The urine cycles are also not consistent and can be really frustrating. Now the emphasis is developing her sense of time and space.

Sunday Sep 14 8 am: Yesterday she looked normal, but still unable to turn to attention. Hope she will be restored - such an encouragement for many.

Wednesday Sep 17 4 pm: The only gratifying response I have is when she looked so relieved after an exercise to flop on the wheelchair or the bed. Can almost detect a smile of content. Pray that her senses continue to recover as she sits rocking on her exercises. Only then will it speed her restoration.

Friday Sep 26 1 pm: So in order to wake up her consciousness we moved her around the house, standing as often to arouse her sense of space and time. If I don't do it who will?

<End of Post> Next  -  Time and Space

Glimmer

Once in a long while, midst a frighteningly unending storm, comes a faint glimmer of light. Miranda now focuses more readily when I eyeball her, and seems to listen to words. I can feel that she responds more to exercises that train her cognition of space and time. But she needs more time to track visitors, utter a vocal response or swallow food normally. Often sleep escapes her.  Without any feedback I've been crestfallen. Seeing no future, I wanted badly out of this. But there are glimmers of hope, just. Being immobile she faces other problems. Like an automobile, parts of a human being fail through lack of use. Her gums bled after more than two years not biting on food. Her feet developed painful corns as her brain fails to do proper pronation that we do unconsciously. For me I felt like I'm kept by my shoes! And I live on the shoestrings of hope.

9 am: A week of strenuous striving.  Standing ground in the most arduous climb against insurmountable elements. The least I could do is not to slide downhill.

Saturday May 10 10 am: Inactive hands but overactive legs bruised herself against the guard rails. Comatose patients need also to be protected from themselves. Miranda is used to protecting everyone else. Amazing that a broken pipe in the brain reversed all that.

Sunday May 18 9 pm: She tried to talk the other night, but the words came out all garbled and her eyes were looking elsewhere. 

Monday May 26 8 pm: Does she feel lonely now when sitting there awake? If so she must be more conscious of her surroundings. Without words from her cannot tell. But now she will focus on the faces of visitors - but uncommunicative. Looking at her missing left forehead can be discouraging.

Sunday Jun 1 9 am: Third night in a row - awake and softly groaning for couple hours. Surely she must be expressing her loneliness.

Friday Jun 6 9 pm: Overcoming spasms this past week - medication to reduce this brain malfunction might have caused extreme drowsiness. But she looked normal this evening.

Tuesday Jun 10 8 am: Had this inexplicable sadness. Hope she continues to improve - hands are softer these days.

Saturday Jun 14 1 pm: Still living in the subconscious, not showing awareness of people around. But I thought I saw her smile this morning.

Friday Jun 20 10 am: Her speech still slow soft uttering. But she is swallowing better. Going for a review Monday.

Tuesday Jun 24 4 pm: Vegetative for the rest of her life? The verdict from the neurosurgeon blows me off - its been more than 2 years I've been carrying her on my back. But when we reached home away from the hospital environment I could see she gave the hint of a generous smile.

Monday Jun 30 10 pm: Though unable to speak, she does value company. Seen from the look of her face when I approach her. Chest congestion, so had to clear it often.

Monday Jul 7 7 pm: Dreaded to go home and see her stricken in bed again. But this time she'll look at me, still unable to acknowledge. Fighting some bedsore rashes.

Friday Jul 25 10 am: So 3 weeks fighting chest congestion. A result of years lying on her back. These days I stand her up often to clear the chest (and also learn to manage waste - the brain has to re-learn this all over again). My legs must remain strong.

<End of Post> Next "Enduring strength"