How a Brain Injury Changed My Relationship with my Mother
April 21, 2013
HOW TIME UNITED ME IN A NEW RELATION WITH MY MOTHER
I am an Indian girl. My mom has been very beautiful with fair complexion, very good height, attractive features and a smiling face. As a typical Indian woman I use to see my mom in routine ornaments i.e. bangles in her hand, a gold chain around her long neck, some attractive tops in her ears, ring in fingers, but suddenly, on 17 July 2006, a completely different personality of my mom confronted me, the cannula, I.V. fluids has taken the place of bangles, tracheostomy has replaced the gold chain, probe of monitor in finger, Many new tubes like oral pipe of ventilator, Ryle’s-tube (nasogastric feeding tube) in nose, urine catheter etc. were also added. My mom has been a Class I officer in India. That day 17th July 2006, the day which has changed our life significantly was the day when I see off my mom for her office but was not aware that after few hours something tragic will happen as a consequent of that I will not be able to hear my mom’s voice for 3 years.
AN OVERVIEW OF HER MEDICAL CONDITION
My mom got a severe head injury because of road traffic accident in the afternoon of 17 th July during her official visit to some place because of head on collision of the car with truck. The impact was so severe that two occupants of car died on the spot and another two lost their life later in hospital. My mom and other member were taken to hospital. We were informed about that by the hospital staff. We rushed there simply imaging that there would be few bandage in my mom’s forehead and she will be fine otherwise and come with us within few hours. But actual scenario was different. On arrival to hospital I found my mom was unconscious with no motor response. The cranial CT scan reported an extensive, comminuted fracture of frontal bone and left parietal bone besides multiple fractures involving the frontal sinus, left orbit and floor of anterior cranial fossa. There were multiple areas of bilateral cerebral contusion. Moreover, there were fractures on neck and on right limbs along with the fracture of left shoulder. Besides, these there were many complications in other body parts as a consequence of accident and the doctor told us she is very critical and anything can happen within 24 hrs. After providing her basic supportive measures like transfusion of blood, putting on elective ventilation etc subsequently her craniotomy was done and bone flap was not replaced for additional decompression. For the next few days blood tests, transfusion of blood, blood components, medicines to maintain vitals was a routine. Nearly after one month ventilator was weaned off and eye opening was there but for pain only. She got infection in craniotomy with CSF leak which was managed conservatively with regular dressing. Eye opening was there after nearly 2 months but still she was not able to recognize. After nearly 3.5 months of accident she got meningitis which was improved using antibiotics as suggested by my mom’s physician Dr. Lalitha Sekhar. Following improvement of craniotomy wound and meningitis, scalp flap reconstruction was done to cover the defect but bone defect was still present. Time is really a great thing. Just a few seconds of collision have changed the life of an active, happy hearted lady to a life supported on many machines.
During her stay in hospital I have travelled 10 hr daily for five months, five hours from our city to Delhi then another five for return journey. On arrival to hospital I use to discus my mom’s condition with doctors then meet my father who stayed there along with our relatives till her discharge from hospital. I have never wept in front of my father rather provided him strength morally. On returning home after travelling for another 5 hrs I use to take care of my younger brother’s study since he was promoting from school life to college life and then handled various guests. Until 4 months I have heard the hard words anything can happen regarding survival of my mom, be prepared but I never lost hope and started my journey next day by thinking that perhaps this might be the day when doctor would say she is out of danger now. Although my mom was not conscious at that time, but even then I use to tell her all the things I have done during the whole day by assuming that my mom must be hearing all this although she is physically not able to reply this. I asked my mom’s neurosurgeon Dr. Pranav kumar, is it would be beneficial for her? He intelligently replied it has no harm. Sometimes me and my brother recorded our voice in a cassette and provided it to the nurse at my mom’s bed so that she may let my mom to hear that via ear phones on opening eyes. In fact she was made to listen her favorite songs.I didn’t’ give any break to my studies. Rather I use to read during my 10 hr journey in bus because I believe that whenever my mom will get recover she might not find herself to be responsible for any discontinuity in my study. Perhaps God has given me extra power both physically and mentally.
APPRECIATION AND GUIDANCE OF DOCTORS
Thus, after so many ups and downs, struggle for life, survival, existence, fight from multiple infections, stamina for multiple surgeries and operations and with intensive monitoring along with intensive nursing care, her stay for nearly 5 struggling months in the Indraprastha Apollo Hospital my mom was discharged in the month of December, with tracheostomy along with T-tube, urine catheter, and PEG feeding tube. At that time she was neurologically stable, alert, spastic quadriparesis present but with improved limb movements
At the time of discharge our neurosurgeon, Dr. Pranav kumar told us about recovery of head injury patient is a matter of time. How long! How much! someone will get improved cannot be said with certainty. But as earlier he also emphasized on the +ve side and encouraged us by saying that since the very first day my mom was admitted to the hospital and till the day of discharge there were many events of miracle which may be her survival, fight from meningitis and other accident related problems. This provided us large support morally and emotionally.
The hospital staff taught me many things like daily care of my mom, making her environment like ICU and told us what basic things we will need at this time etc.
We managed all these things before arrival of my mom at home like air mattress, suction machines, nebulizer etc. A completely new chapter was added to my life. My mom was alert at that time but she was not able to speak, understand much, and walk. Even she was not able to turn herself by her own. But after everything she was my mom. I decided howsoever would difficult the task be I will do at my best for caring my mom. Sometimes I got disappointed because my aim was to join IAS (Indian administration Services) but life has changed the plans then my inside answered me, If reverse would happened i.e. if I got the accident did my mom would think like this, never. Since that day I never think negative rather looked forward and tried new better, way for her recovery.
Initially we kept a nurse to assist soon I learned the usual things and do not needed her. My day started with her morning medicine, morning exercise, cleaning her motion, sponge bath, periodic fed at the intervals of 2 hrs, dressing of peg-fed, tracheostomy, suctioning as per need etc. We kept a physiotherapist for her limb moment.
SOUND RESPONSE
As per our orthopedics Doctor’s advise, we started her wheel chair sitting for maintaining back muscles for half an hour or more depending upon her comfort. Sometimes twice or thrice a day. We use to take her outside in front yard and backyard, jaunt her on chair in all the rooms in home but taking due care of T-tube, PEG feeding tube, urine bag. We use to put moist gauze at the end of T-tube so as to prevent sand particles and any small mosquito etc. We continued this every day. Suddenly one day I found she started responding to sound whenever, she heard any sound like traffic horn etc she turned her neck towards the side of sound source. This response soon got enhanced towards multiple voices.
START OF ORAL FEEDING
One day the PEG feeding tube accidently got out. We all feared much and contacted to our doctors at Apollo hospital, New Delhi. They told us it to be okay it happens some time. They let the scar of PEG feeding tube to heal and provided my mom with Ryle’s Tube and advised to start oral feed with soft diet. This was truly a positive indication from God because if the peg had not come out, we might not be able to start my mom’s oral feed.
I started with boiled potatoes, thick custard and even the soft baby fed like Cerelac. Initially the diet intake was few spoons which improved with the span of time. Liquid was also tried orally starting from few spoons. The major liquid intake and medicines were however provided through Ryle’s Tube which needs to be changed at the interval of 20-25 days depending upon the condition. Soon by guidance of doctors I learned to change the Ryle’s tube and even tracheostomy.
PROVIDING PAIN FOR HER COMFORT
Sometimes I feel too bad as why the luck has given me such an act of providing pain to my mom as suctioning, change of Ryle’s Tube, urine catheter and physiotherapy of limbs (so that these would not got stiff) were painful. But I have to make myself somewhat hard since it was the need of hours and much necessary for maintaining my mom for the day when all these tubes etc will be taken out.
TRACHEOMALACIA-RESPIRATORY PROBLEM
Everything was going fine. Although gradually but certainly things were changing. Oral intake of soft diet and liquid was getting improved. In fact even the tracheostomy was decannulated in Jan 2008. Nearly after 2 months of removal of tracheostomy suddenly at one night my mom found difficulty in breathing. There was loud noisy breathing (stridor). The destiny played a very ugly game with us. At that day, there was a famous festival of India-Holi, festival of colors. Everyone was celebrating that but we were facing such a deep trouble that because of the day of festival we got the ambulance with very difficulty. We have to rush to Apollo Hospital, New Delhi. I have no words to express our situation where every second was becoming alarming and raising the fear. The doctors there confirmed it to be Tracheomalacia (a condition characterized by flaccidity of the tracheal support cartilage which leads to tracheal collapse and the trachea may become so narrow that it becomes hard to breathe) and as a consequent of it tracheostomy was replaced. Although we all were disappointed but positive thing was that her life was safe. Although this incidence has lowered our confidence but was not able to shaken our faith in God and we started with same routine.
Earlier the sounds of ambulance were terrifying but those days these have become part of our life. In fact travelling to Apollo from our residence was also like a big test of life because of my mom’s condition and the 5 hrs run at that stage. We use to take the manual suction machine and other such things for any need in the way. Rather I kept a beg ready for any such emergency.
ANOTHER PROBLEM EMERGED-OSTEOMYELITIS
Meanwhile I have joined Ph.D. in organic chemistry. Although it was very difficult for me to manage all the tasks i.e. extensive lab work, my mom’s care, managing home since all things needed a large contribution of time and labor. I do not know how but certainly God has given me enough courage to manage all this. Moreover the support of my father and my younger brother’s help can’t be forgotten.
The destiny has set another exam of bearing pain for my mom. That was osteomyelitis (infection of bone). The rod implant which was placed for the union of right femur fracture got infected. It was physically visible by the large lumps of swelling on the lower side of thigh and pain and finally pus discharged. I talked to my mom’s orthopedics, Dr. K. B. Attri, at Apollo. They confirmed it to be an osteomyelitis by x-ray analysis and other necessary tests. In nearly one year she was operated twice for it. But even after that, this started reoccurring after every 2-3 months, sometimes 6 months. Each time dressings, antibiotic treatment sometimes intravenous, another times oral was done. However we never missed the normal routine, indeed our orthopedics suggested chair sitting to my mom is very important to deal with osteomyelitis and we, off course obeyed him.
That year, 2008 was really very-very hard because if we moved 2 steps forward suddenly something happened which on analogy to a backward direction reaction as it is found in my subject chemistry, forced us to march four steps behind over our move. Sometimes we all were very disappointed, but soon we gain our enthusiasm, by remembering that a ray of light destroys the darkness of night, howsoever longer the night is.
ANOTHER PROGRESS-REMOVAL OF Ryle’s TUBE
By acquiring, the grip and pick of hand, the one more important step was achieved which was removal of Ryle’s tube. Now my mom has become considerably alert and her majesty and speedily improving left hand movement assisted her in getting rid of R.T. (Ryle’s tube). She has become very clever. At night, on finding that everyone is sleeping she used to take out the Ryle’s tube by left hand put it silently aside. On morning this surprise was waiting for us. We all feel as glad for this naughty activity of her as a mother feels delighted on the notorious activity of her child.
This time God was giving us indication for a new step i.e., oral intake of fluid which at that time has considerably increased. We tried to reinsert Ryle’s tube but every time result was same she was not tolerating that tube anymore. Within a few days her oral intake of both fluid and food became normal. But still another problem was there-how to give her medicine which was otherwise given through R. T. To find the solution to it, I remembered my childhood event. Whenever I got ill in my childhood my mom use to give me medicine by dissolving it on water on spoon along with a little sugar.
•I tried the same thing, but all in vein. At that time my mom’s taste sensation has become so strong that she uses to reject it by spitting out from her mouth along with the peculiar facial expression for bitter taste as found in us.
•Then I tried it by mixing with feed like sweet custard which was also not successful.
•Finally I got the way with tea and biscuits. I use to mix the crushed medicine with biscuits soaked in tea with some crushed sugar. Then I use to give this homogenous paste by spoon along with bites of biscuit soaked in tea.
Thus the main problem which emerged after removal of R.T. was solved.
THE DAY WHEN MY MOM TOOK TEA BY HER OWN HAND
Every day my life was telling me a lesson. After so many setbacks, outcomes were gained like my mother started holding her neck, left hand movement got highly efficient, left leg movement got enhanced and right hand movement improved at finger and clavicle bone. Although right leg bending was feeble but the feet showed up and down movement.
One day I tried a new thing, I, gave a cup of tea to my mom, in her left hand. She picked it instantaneously and sipped the tea in cup by her hand so fast that she will satiate the long will to take tea by her own hand just in 2 minutes, which was otherwise suspended because of her neural status. From this new achievement, I increased her picking activities.
SITTING BY HERSELF
The tracheostomy was decannulated in Jan 2009. The removal of tracheostomy and Ryle’s tube provided the way to many things since a lot of care has to taken for handling these while doing any new thing. Due to routine physiotherapy and regular chair sitting, my mom’s back got enough strength to sit without support although initially it was for a less duration. I use to let my mom sit over the side of bed with legs in hanging down position, initially supporting her back with pillows as without pillow support she use to fall backwards. I keep on repeating this day to day. Soon her back gained enough strength that pillow support was needed no longer rather, sitting without support was maintained for 2 minutes, then 10 minutes finally up to half an hour. I use to do this 3-4 times a day.
But the whole procedure was not as easy as it seemed. Initially my mom felt pain in back while sitting and use to cry. I tried to divert her mind by counting. I use to ask her sit till I count 100 for 5 times, sometimes up to 10 times depending upon her capacity to sit. This trial was very successful. In fact I was achieving two things this way, one sitting other her mathematics was getting sediment.
ACTIVITY TO INCREASE HAND GRIP
While making my mom to sit over the side of bed with legs in hanging down position, sometimes I used to give few coins in her left hand and asked her to throw these on floor. Initially she was perplexed and was not able to decide whether to throw the coin or not. But slowly I persuaded her to do so. Nearly after 10-15 days she became confident enough to throw the things. This way she learned physics i.e. the effect of gravity. Then I taught her about fixing targets by asking her to pick objects at one point then throwing at specific place just like game of arrow hitting the mark.
Moreover, through this coin picking activity I made my mom to learn about the difference of picking things one by one or collectively. Sometimes I use to ask her to pick 4 or 5 or more coins. One time she was correct other time may make mistake but soon she got the perfectness.
ATTEMPTS TO RECALL MEMORY
We tried many attempts in this regard. I use to show my mom our photo albums. Earlier when the attention was low and eye fixing was not gained even then, we use to show her photographs on the same side where she looked. Not only that but we try to focus her on television also. For this also sometimes she gained attention with television another time no curiosity. But we tried it every day without thinking that we are not getting enough results. Soon just like ripening of crop our labor brought fruit i.e. my mom started focusing on things and gained attention. I use to recall her by pointing my finger to a particular relative and tell about her relationship to that particular relative.
During Jan., 2008, there was persistent bulging of craniotomy flap and my mom got somewhat drowsy. My mom’s neurosurgeon diagnosed it to be hydrocephalous (abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain). A Ventriculoperitoneal shunt was carried out resulting in disappearing of craniotomy flap bulge and my mom became more alert.
To my great surprise, one day a very different activity occurred. When she gained her left hand moment, I asked my mom to find out a particular relative by pointing with her own finger. She did it successfully. Rather she performed a new thing, one day she took the album in her hand (I supported it from other side as her right hand moment was still feeble) and started turning pages of photographs album, flip through each page, as someone does while reading a book. We use to take her to different rooms of our home on wheel chair, showed her objects, her saris and another dresses, almirah, played her favorite songs, etc.
READING AND WRITING HABITS
I arranged charts of week days, months, alphabets, numbers and pasted them on the wall, in front of my mom’s bed so that whenever she would see these charts this would remind her habit of reading. I remembered one event of my childhood when our math’s teacher advised us to make a chart of some difficult formula’s and paste it on wall in front of our bed so that its very presence will remind us the formula which proved to be a very successful advice. I use to bring newspaper in front of her and by pointing with my finger just speak out the headlines. All this strategy really worked.
Regarding writing our speech therapist advised me to teach my mom like an adult i.e. I should not use the method of matching the points to form alphabets as it is done for a nursery child rather I have to recall the things to learned persons. First day I asked my mom to write alphabets. She tried a few. For the next few days I concentrated her on the charts of alphabets and just like a teacher provides her students some homework, I use to ask my mom to write these. Although, initially this was very difficult but with patience and hard work I got the way. Whenever I asked my mom to write alphabets she gave me good results.
But above all these, accident has brought a major change. Before her accident my mom has been right handed. But now because of large damage to left frontal lobe, the movement of right hand was low. She learned to write by left hand. Slowly she started writing words on my dictation and then sentences.
The time has tided me in a new relationship with my mom and the destiny has made my mom to be a daughter of mine.
TASK FOR REMINDING PLACES
As a consequence of tracheomalacia, the tracheostomy was done again as I cited earlier, but nearly after 10 months it was decannulated as per our neurosurgeon’s suggestion.
Thus after nearly 3 years of my mom head injury, the main tubes tracheostomy and Ryle’s-tube were removed but one tube catheter was there. We started a new thing. Earlier we use to take my mom inside home, in our backyard, front yard etc on wheel chair. This proved much useful in gaining sound sensation, alertness and most important an indirect way for exercising her back muscles.
One day I think why not we expose my mom to outside world as the infection causing tubes were not there. Taking her outside on wheel chair was not practically possible, because of left frontal lobe craniotomy. So, we decided to take her outside in car. Although, initially it seemed very difficult as the whole procedure involved firstly shifting my mom from bed to chair, then from chair to car seat and most important the catheter is to be taken care of but carefully and prevention ally me, my father and my brother managed all this.
POSITIVE EFFECT OF OUTSIDE ENVIRONMENT ON MEMORY
Initially on the way I use to tell my mom about the things on left side (like hospital) and right side (like college) and then, on returning from the U-turn I use to told her that the things on left has become right and vice-versa.
I keep on repeating these things. Sometimes we use to jaunt same streets for few days so that she might recall these places. Another time we change streets, took her to market in car to let her explore new places. We also use to go to our village where the old known places and the greenery of field further proved to be a boon for memory.
Finally I got the fruit she started distinguishing between the things on right and left side. When I use to ask her what is on left side, she replied absolutely for instance, she rightly distinguished the left, right and face-to-face location of hospital and college respectively. Not only this but she also use to object when we change the routine roaming track.
SPEECH
After nearly 2 yrs of discharge of my mom from hospital I contacted the speech therapist. Although the neurosurgeon told us about too less chances of speech because of large damage to left frontal lobe but I decided I have to make my mom to speak. We consulted speech therapist. He told me that very first thing I have to do is that I have to try whether my mom will be able to blow in to flute or not as by doing so her vocal cords will be activated. I tried it by fearing whether it will work or not. But by God’s grace the trial was very successful she blow in to flute so nicely. We all were very happy. I told it to therapist. He told me the next step which was to recall my mom, normal things like week days, months, emotional events, like weeping, laughing, etc. For this he provided me a chart where pictures representing normal things like emotions (weep, cry, happiness) and relations (like father, mother, children etc.) were present. I tried all these things. Even I use to read newspaper by placing it in front of her telling her significance of words and pictures printed on it.
After nearly 4 years, on December 10, 2010 suddenly, my mom started uttering some words. I just by chance asked her about my name, her name, our relative’s name she speaks out immediately. I was so happy. In fact every time she spells out exact words. I contacted the speech therapist, he told me to let my mom learn more words. We all practiced own way. What I thought was fact that watching T.V. and reading newspaper in front of her provoked a great impact. Earlier she use to point out relatives in photographs via finger, this time she started recognizing them by calling their name. Soon she started speaking sentences like I need tea, give me breakfast, I want to go outside etc. slowly the pronunciation also got improved.
As I mentioned earlier, I use to count while making my mom to sit. When she started speaking I use to ask her to count for 20, 30 etc. herself while sitting, depending upon her mood, as now she sometimes exhibited obstinate behavior like a child. Sometimes I ask her to tell me tables, week days, months, prayers, songs etc while sitting on the side of bed. She got learned all these things. I feel much delighted on hearing tables in my mom’s voice. Now my morning really becomes good on hearing good morning from my mom.
The God has given us a new ray of life.
SURPRISING DAY
One day my brother was listening an old movie song while working on his laptop. Suddenly my mom started singing few lines of that song. We all were too surprised. Then I sung a half line of her favorite song in front of her and asked her to complete as much she can do. She completed some of the remaining part.
Working on this strategy, I use to tell only some part of idioms and then let my mom to complete the remaining just like a teacher performs while carrying out the test for filling the blanks. She did it perfectly.
LEG MOMENT IMPROVEMENT
As I mentioned earlier in order to increase sitting activity of my mom I use to let her sit over the side of bed with legs in hanging down position but with some support at bottom so that legs might not got pain while sitting in this position. I use to remove the support frequently for few minutes in order to enhance strength of her legs. Sometimes I use to ask my mom to move her feet to and fro until I count 10, then 20 or 40 etc. depending upon her stamina to bear pain. As a consequence of this activity her left leg got good strength but right was not gaining much.
Then I bring into being a new idea, I took empty containers of Telkom powder. I filled them with marbles of different numbers in order to create different weights. For the left leg, being good in strength and activity, I took box with large no. of marbles i.e. higher weight and asked my mom to kick that till I count 10 or 20 finally the stamina reached up to 40. She did it very well. I was not expecting that she would perform the act so fluently and efficiently.
The right leg, being less strong than left one, was made to kick box with less number of marbles i.e. lighter weight. Initially it was slow, but with time the right leg also got strength and its pace to kick became fast.
Soon the weights for left and right leg were respectively increased which ultimately gained much enhanced moment of both legs. Moreover, this was indirectly making knee exercise.
PRESENT STATE OF HEALTH
Now nearly after 6.5 years of accident, my mom who has been a vegetative head injury patient with only alertness has come out to be a person with good understanding, speaking ability. The movement at right side is although weak but much improved and the left side has become very efficient. I strongly believe that soon my mom will also start moving on her legs and my very dream to go market with my mom will come true.
Her personality is again getting transition to the original one i.e. ornaments at neck, hands, ears, talking, laughing, weeping and with many other emotion moods. She has become a fond of watching Television and enjoys delicious food. As a chemistry student I can stop myself writing that it has happened like a reversible reaction in chemistry but as 2nd law of thermodynamics says “every process is accompanied by entropy” the reversal in backward direction is not 100% same as for forward direction.
Through my mom’s story I want to tell the whole world that please do not lose heart and courage when your loved ones have to face such a big medical problem. I was at the age of 21 when my mom got accident and during these 6.5 years I have learned the whole life experiences. If we work by heart God will certainly support that. I strongly oppose Euthanasia. I want to share my experiences so that the persons who are already suffered by their destiny should get support from their family. It is really our examination set by God to find how much we are concerned about our loved ones.
My mom’s case is well known to many people in our city. These days many people come to me for their family members who got such sufferings and became bed-ridden, in order to know all what I have done for rehabilitation of my mom after such a severe brain injury. The great scientist “Stephen Hawking” is inspiration to us. At last but not least I want to share a moral which I got from the very famous Thirsty Crow story-“where there is will there is certainly some way –addressed by destiny and constructed by us”.
– submitted by Preeti