Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
I was petrified of holding Vic as a baby. I was even more petrified of anyone else holding my baby. I had a strict “Look but don’t touch” policy.
“Don’t worry,” people said. “She won’t break.”
Vic’s first known fracture was at the age of 3 weeks. She sucked her little thumb and fractured it… By her 3rd birthday Vic had had 41 fractures.
As she grew older she became more careful. Physiotherapy strengthened her muscle and the stronger muscles protected the bone… By the time she celebrated her 18th birthday, Vic believed that she was invincible.
At the tender age of 21 Vic got married. When Colin proposed I cried and asked him whether he was aware what life with my OI child would mean… Of course he did and despite my pleading and sermons about the danger of pregnancy, Vic fell pregnant 6 weeks after the wedding…
Vic embraced her pregnancy as she embraced life. She survived the pregnancy and the birth.
Jared was six weeks old when Vic started battling to pick him up. Her little wrists deteriorated to such an extent that she needed surgery to both wrists when he was 7 months old.
Baby Jared stayed with us for a couple of week whilst Vic recovered.
It was the first time in my life that I felt useless, hopeless and helpless. I could do nothing for my child. I had been relegated from being “the Mother” to being “the mother-in-law”. My position in the family had changed forever.
When I watched this video I was catapulted back into Vic’s desperate attempt at living a full and normal life.
I remember my blind anger at Vic for falling pregnant…. Unknown number of fractures…Untold pain.
I remember Vicky believed that she was invincible…
It is strange the number of Stepping Stone Hospice referrals we have received over the past two weeks. The patients have controlled pain and symptoms. Many caregivers are also looking for a dumping ground.
Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..
It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.
It is estimated that a maximum of 5% of people who die from terminal illnesses in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.
Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?
Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?
They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?
I read the post of an amazing woman who is suffering from congenital heart failure. She is in so much pain. I cried when I read her post. http://thedrsays.org/2012/11/08/ She replied to a question whether better pain control was possible….. “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”
I thank God that we are able to make a difference!
“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell
I just finished a batch of choc-chip cookies. The house is quiet and sweet smell of the biscuits has permeated the air. The Christmas tree lights are flicking and the first batch of gifts beautifully wrapped. It is the season of Christmas. Two weeks ago I despaired that Vic would not live to see Christmas. Dr Sue came and saw Vic this morning. She lanced the cellulitisabscess on Vic’s arm. My baby girl was so brave!! Sue told us of a young man who came to see her in her rooms with a small abscess in his face. He cried with pain. Sue told Vic what a brave person she is…I was so proud of my little girl. Vic’s heart and pulse rate is very elevated. She has a kidney infection. Kidney infections make her tired. I just checked on Vic, and she is sleeping so peacefully. She has a serene expression on her beautiful face, and she is truly pain-free tonight. Sitting here I am counting my blessings. My baby girl is home. I cannot begin to imagine how difficult it would have been if Vic lived elsewhere or if she was married or involved. I can now care for my child without having to consider my “position” in her life. I am able to be her mommy and take care of her. The boys are settled and happy living with us. We love having them so close to us. They are such well-behaved, kind and helpful boys! Before Vic moved home the boys, mainly Jared, had to cook most days. Now they are able to be children. Life has settled into an easy routine. We have laughter and fun. We cry and despair. We hug. We talk and constantly affirm our love for one another. Vic is spending a lot of time with her boys – talking. She helped with the preparations for Jared’s 16th birthday party. Vic passed me the spices when I baked this year’s Christmas cakes. We laughed when we decided the cake needed another “splash of brandy”. Vic “chose” her Christmas Cake. My wonderful husband is such an amazing person. He is my rock and pillar. He loves and protects us. I am happy and content with our lives. Thank you God for this time of closeness.
We live in a harsh world. We live in a dog eat dog world where we turn a blind eye to the hungry, homeless, needy and dying. I have had the most unfortunate experience of living through my daughter’s inextricably slow death.
Many times I would lie next to her in her bed, and wonder how much fear she was experiencing. She expressed her fear for the boys, her dad and me. Never did she talk about her fears for herself.
That I read in the blog of an incredible woman, Sandra Callahan. Sandra suffers from congestive heart failure. She is living with her impending death. This brave woman’s journey gave me insight into my child’s heart and mind. I am eternally grateful to Sandra for her blog, her raw honesty, her friendship and advice. Sandra selflessly shares her journey with the world.
I have benefitted from her blog. Vic benefitted from her blog. Many people have and will benefit from her journey in the years to come…Sandra has externalized her journey by publishing a book.
I was so honoured when her agent asked me to write a review. Yet it was a difficult review to write. How do you say you derived “pleasure” from something as heart-breaking as Sandra book? How do I thank Sandra for telling me what it feels like to die? How do I thank her for allowing me to understand my dying daughter’s heart?
Sandra, my friend, thank you for your advice over the past two years. I carry you in my heart and wish we could have met…
Clinical depression goes by many names — depression, “the blues,” biological depression, major depression. But it all refers to the same thing: feeling sad and depressed for weeks or months on end (not just a passing blue mood).
Depression is a state of low mood and aversion to activity that can affect a person’s thoughts, behavior, feelings and sense of well-being. Depressed people may feel sad, anxious, empty, hopeless, worried, helpless, worthless, guilty, irritable, hurt, or restless. They may lose interest in activities that once were pleasurable, experience loss of appetite or overeating, have problems concentrating, remembering details, or making decisions, and may contemplate or attempt suicide. Insomnia, excessive sleeping, fatigue, loss of energy, or aches, pains, or digestive problems that are resistant to treatment may also be present.
If you identify with several of the following signs and symptoms, and they just won’t go away, you may be suffering from clinical depression.
Feelings of helplessness and hopelessness. A bleak outlook—nothing will ever get better and there’s nothing you can do to improve your situation.
Loss of interest in daily activities. No interest in former hobbies, pastimes, social activities, or sex. You’ve lost your ability to feel joy and pleasure.
Appetite or weight changes. Significant weight loss or weight gain—a change of more than 5% of body weight in a month.
Sleep changes. Either insomnia, especially waking in the early hours of the morning, or oversleeping (also known as hypersomnia).
Anger or irritability. Feeling agitated, restless, or even violent. Your tolerance level is low, your temper short, and everything and everyone gets on your nerves.
Loss of energy. Feeling fatigued, sluggish, and physically drained. Your whole body may feel heavy, and even small tasks are exhausting or take longer to complete.
Self-loathing. Strong feelings of worthlessness or guilt. You harshly criticize yourself for perceived faults and mistakes.
Reckless behaviour. You engage in escapist behaviour such as substance abuse, compulsive gambling, reckless driving, or dangerous sports.
Concentration problems. Trouble focusing, making decisions, or remembering things.
Unexplained aches and pains. An increase in physical complaints such as headaches, back pain, aching muscles, and stomach pain.
Negative thoughts. You can’t control your negative thoughts, no matter how much you try
Suicidal thoughts. You have thoughts that life is not worth living (seek help immediately if this is the case)
There are many on-line depression tests. These tests should not replace or substitute a visit to a physician. It is only an indicator. http://www.depressedtest.com A physician will have to rule out other serious medical conditions that may cause similar symptoms.
The main types of depression include:
Major depression — to be diagnosed with major depression, you must have five or more of the symptoms listed above for at least 2 weeks. Major depression tends to continue for at least 6 months if not treated. (You are said to have minor depression if you have less than five depression symptoms for at least 2 weeks. Minor depression is similar to major depression except it only has two to four symptoms.)
Atypical depression — occurs in about a third of patients with depression. Symptoms include overeating and oversleeping. You may feel like you are weighed down and get very upset by rejection.
Dysthymia — a milder form of depression that can last for years, if not treated.
Postpartum depression — many women feel somewhat down after having a baby, but true postpartum depression is more severe and includes the symptoms of major depression.
A year ago I posted this… I remember Vic’s screams of pain, the agony on her precious face, the raw fear in her eyes.
Vic basking in the winter sun!
Sunday was an amazing day. Lorraine, my sister, came to visit and it was great having adult company that discussed more than pain control, bowel movements and vomiting.
Lorraine moved a chair into the sun for Vic. Vic sat basking in the winter sun sipping lots of coffee. In true form, Vic on her occasional good day, pulled the dam from under the duck. She was like a little jack-in-the-box. Needless to say, I was a spoil sport as I kept begging her to slow down…She did at 15:00 when she literally crashed.
Vic sobbed from pain and my poor sister wasreduced to tears. She is not used to facing the raw pain of a terminally ill patient who breaks through her pain threshold!
Vic dozed on and off but kept waking from the pain. Maybe she took some extra painmeds because she seemed disoriented? Both Danie and Lorraine expressed their concerns that she seemed to have totally lost track of time and events…
Sunday afternoon the boys came home after spending the weekend with their Dad. Danie took Jared and Kirsten, (Jared’s girlfriend), to church. Vic kept trying to get out of bed. She is so darn stubborn. She hardly ate any dinner so I gave her anti-nausea tablets and only half her normal pain medication. She kept getting out of bed. She would just not stay in bed.
I got so angry with her that I said I would fetch Jared from church. I needed to remove myself from the situation. Lorraine said “let me stay with Vic” and I said “No! Come with me”
Minutes after dropping Kirsten off at home I had a phone call from Danie telling me that Vic had a bad fall…
At home she was lying in a crumpled little heap full of blood and screaming from pain. Jon-Daniel, bless his heart, was lying next to her on the bed trying to comfort her. Vic went hysterical when I said I was phoning an ambulance.
“No Mommy, No!!! No ambulance! No ambulance”
We agreed that we would try to get her to hospital in my car. Jared half carried her out to the car and then the drama began. We could not swing her legs into the car! She was screaming with agony.
I phoned the ambulance service but when they arrived it was obvious that they could not lift her onto the spine board and/or bed. Eventually we repositioned Vic in the car. Jared sat behind her and cradled her in his arms. The ambulance escorted us to the hospital.
At the hospital it took at least 15 minutes before the Trauma and Medics staff decided how to move her into the Trauma Dept. Vic screamed and screamed with pain! From 21.30 to 03:00 they x-rayed and scanned Vic. Most of the x-rays were done in the Trauma section. Vic’s pupils were very dilated and she was VERY confused so they also ran a CT Scan.
Vic in ER
If I was ever given the opportunity to erase 30 minutes from my life it would be the 30 minutes that it took to move Vic from the ER bed onto the scanning table and back, straightening her legs and forcing her to lie on her back…she screamed and cried “Mommy help me, Mommy!!! Mommy!! Mommy help me!!!”
The diagnosis – “impacted fracture of proximal metaphysis of right humerus”. Vic was admitted to the orthopedic ward and scheduled for surgery today. The orthopod decided that she is too frail and the risk of the sepsis spreading from the spine and abdomen to the arm, too great, for him to “pin” the arm. So Vic’s arm is in a sling and will mend, albeit crooked, eventually on it’s own. She also has a displaced fracture of the fibula, posterior malleolus, (I believe these are all ankle fractures and Lanie, a physiotherapist says if she had to choose a fracture it would be these fractures), an avusion fracture of the calcaneus and several vertebrae …The spine…well what is to do? Pain control, bed rest… Oh, did I mention that the staff had mobilized Vic and she had WALKED on her broken ankle because no-one read the X-ray reports??? I only picked it up when I read the reports this afternoon!!!! I had to report it to the nursing staff!
I would like to point out that this is in a Private Hospital….can you imagine what happens in Government Hospitals?
I am so angry with myself. This happened because I got angry with Vic. I should have stayed with her and not reneged my Caregiving duty. I should have had been there to bulldoze my stubborn child into remaining in bed. My temper has caused Vic endless, unbearable pain. Who knows how long it will take her to recover from this trauma…if she indeed ever recovers from this! I will never forgive myself for this!
Well with the bad comes the good as well. We have dreaded Jared’s surgery on Wednesday as we know Vic would have insisted on trying to sit at hospital all day. Actually, the whole week! Problem solved. She is too sore to move… And will more than likely still be in hospital on Wednesday.
The nurses just changed her bed linen and she screamed with pain! How are we going to take care of Vic at home? My sister offered to come through but two qualified nursing staff could not move her without causing major distress. She also cannot walk and needs to be “bed-cared” for. …bed baths etc, etc, etc
For the first time, ever, I am at a loss. I am so tired. I don’t know what to do anymore.
On the 17th of May 2012 I posted this. It was my first blog post ever. I was however something I had written ion the 27th of November 2003
How could I ever think that I want my child back? It is over. Vic is at peace and pain free. The pain has transferred to me…
My dearest child
My heart breaks when I look at you. Your eyes reflect your fear, acceptance of the inevitable, rebellion and pain. The morphine dulls your dark eyes…
It is so difficult seeing you in so much pain…the times when you are bent double from pain. My heart breaks when I see how you are still trying to care for your family. If only the boys knew how many tears it takes to make a sandwich…Many a time when you are sobbing from pain I see the boys pretending to sleep – as if shutting their eyes can block out your sobs… I see the helplessness in Colin’s eyes when he looks at you. It is soul destroying!!!
It is at times like this that I cry out “How much longer God? When will her suffering end?” But then I look at the Christmas tree and the Christmas lights and beg “Just one more Christmas please God!”
With the obstruction I fear that you will not make it. The morphine aggravates the situation! When will you develop another fistula? It is only a matter of time. How time do we have left?
I wish I could just hold you and protect you against the pain and death. If it was a bullet I would take it for you but how do I protect you against your own body? How can your body betray you like this?
In my mind’s eye I see you lying on a bed, strapped in,poison flowing through your veins… You are dying
I often wondered exactly what went through Vic’s mind in the final months of her life when she felt death sneaking up on her. I know she was scared and lonely; she was heartbroken knowing that her boys would grow up without her….I am not stupid. I know that Vic did not share all her fears and thoughts with me. She was trying to protect me.
Today I read a bittersweet post. I wept when I read the words. It was as if I heard Vic’s voice…felt her fear…
June 4, 2013 by sugarmagzz | 6 CommentsIt happens from time to time, I get a glimpse of my “old” life and for a fleeting second forget that I am dying of cancer. These moments are simultaneously wonderful and devastating. I might be out with a friend for lunch, pumping gas into my car, shopping for Owen, or doing dishes at my kitchen sink. It’s always random and for that brief moment I feel free, as though I’m flying and nothing is tethering me down. I feel like I did before, able to live my life without a shadow cast overhead. It doesn’t last very long because reality always comes crashing down, dragging me with it in its vice-like grip. In this moment of clarity — when it all comes rushing back to me — I can’t breathe. I’m ten again and I’ve fallen flat on my back off the trampoline — immobile, breathless, terrified. This time there is no ground to break my fall, and so I’m left to kick and scream in mid-air with no one to hear me, no one to catch me. Alone and falling, falling so fast — past the memories that were supposed to one day be mine. I reach out to touch them and slide my fingers over their sparkling surface…The look on Owen’s face when he sees Disney World for the first time.The birth of our second child, to see again Andrew’s incredible capacity for the patience and self-sacrifice of fatherhood.Owen’s high school and college graduation ceremonies, his wedding.Ashlei’s wedding, the birth of her children, becoming an Aunt.Retirement — relaxing on the dock looking out over the lake with him, my partner in life…reminiscing about the early days and arguing over chores, still.Grandchildren.I will not see these momentous occasions, they will occur without my physical presence. I hope that there is more to this life, and that I can be there in some way, spirit or otherwise. I hope that my loved ones will always feel me near as they celebrate those unforgettable moments that life has to offer, but my sorrow at missing out on them is endless. I am so very grateful for the incredible moments I have been blessed to experience and I will hold them close until the end. When my time comes, I will take my last breath knowing that my time here was extraordinary, that during my brief existence I lived and loved as greatly as I could. I know there will be more wonderful memories to make before this happens, but everything for me is tinged with darkness — all of the good moments are bittersweet. Still I fight for them, even though they are broken and imperfect. They may not be the memories I thought they would be, but they will still be special.
Tonight I am doubting myself again. I wonder – did I comfort my child enough? Why was this precious child of mine condemned to a life of horrible pain and suffering? She never truly lived! Why did she die and bad people continue to live and prosper? Why was she deprived of a future??? She was such a good person!!!!!
I want to hold her and protect her. I want to tell her how much I love her. That she is the best thing that ever happened to me. That my life is empty without her. That I understood her fears.
“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson Stanley
To laugh often and love much – That Vic did. She always had a smile on her precious face. Even when she was in dreadful pain she would try to smile. When she was in a lot of pain her laugh was shrill. Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.
“That is terrible Mommy. Why?”
I felt like hitting my head against a wall! What did the child think? In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag. It was too big and positioned very low down.
“I worry about you every second of the day baby. I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything… I worry about your wound. I worry about your pain control….”
“Mommy, that is so sad. At least once a week the boys and I laugh so much that my tummy hurts from it…”
Vic loved unconditionally and with every fibre of her body. She gave everything! She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys. She LIVED love.
Her last words ever were “I love you Mommy”
… to win the respect of intelligent persons and the affection of children; Worldwide, intelligent people, respect and admire Vic for her courage, tenacity… We called Vic the “baby whisperer”. Children loved her. She loved children. Her only ambition as a toddler and teenager was to be a Mommy. She loved her sons beyond comprehension…
…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life. People got tired of waiting for her to die. “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable. False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.
….. to appreciate beauty; to find the best in others; My precious child was so naïve. She refused to see the bad in people! The only time she got irritated and miserable was in hospital. She always found the good in people. She did not speak badly of people. When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge. Vic taught me unconditional love, forgiveness and tolerance. Vic brought out the best in me and the most other people.
…..to give of one’s self; Vic was a people pleaser. She would turn down MY bed!!!! She made sacrifices for each and every person in her life. Even in death she worried about other dying people who were less privileged than she was. I promised her 2 am one morning that I would start Stepping Stone Hospice! She kept talking to me about Stepping Stone until she lapsed into a coma.
…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place. Her sons are monuments of the person she was; her dream of a Hospice has been realized.
……to have played and laughed with enthusiasm and sung with exultation; With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.
……to know even one life has breathed easier because you have lived Vic’s legacy will live on through her sons and Stepping Stone Hospice. Long after I have died, people will continue to benefit from Vic’s dreams and goodness.
—this is to have succeeded.” My angel child – you succeeded! You succeeded in life and with living. You made the world a beautiful place filled with goodness and hope. I am so proud of you. You lived life to the full. You made a difference! You lived a greater and more successful life than most people. You have put the world to shame. You are my hero!
I have often compared Vicky and my lives with the lives of Aurora Greenway (Shirley MacLaine) and her daughter Emma (Debra Winger). Terms of Endearment cover three decades in the lives of widow Aurora Greenway (Shirley MacLaine) and her daughter Emma (Debra Winger).
Fiercely protected by Aurora throughout childhood, Emma runs into resistance from her mother when she marries wishy-washy college teacher Flap (Jeff Daniels). Seventy five minutes into the movie Emma discovers that she has terminal cancer. http://www.rottentomatoes.com/m/terms_of_endearment/
The final third of the movie is about Emma dying and the family’s journey coming to terms with it.
Aurora, the mother, is a sharp-tongued, controlling mother who is fiercely protective of her only daughter. Emma, the daughter, is a rebel… Just like Vic and I were.
I was distraught, like Aurora, when I found out Vic was pregnant. I hated the foetus that was growing in her body… I knew it could kill her. The second I lay eyes on Jared, I experienced a rush of love that has never been equalled…Don’t misunderstand me – I love all my grandchildren equally. But, when I first saw Jared I knew I was capable of perfect love.
Aurora grows to love her grandchildren with that perfect love.
Aurora and I are not the touchy types. Vic and Emma would hug and hold on forever. I was often uncomfortable with the “excessive” display of emotion. Vic and I always held hands but I get uncomfortable with long hugs….being that close to another person for a “long” time. Vic thought I was the worse hugger ever. There was a day that Vic said “You have not gone all stiff Mommy. That was a perfect hug.” In the movie there is a scene where mother and daughter hug. Emma Horton says: “Momma, that’s the first time I stopped hugging first. I like that.”
Then of course there is the dreadful hospital scenes where Emma is in so much pain. Aurora is calm, matter of fact and placating when she talks to her beloved daughter. She loses her calm exterior the minute that she walks out of the room into the nurses’ station.
Aurora Greenway: It’s past ten. My daughter is in pain. I don’t understand why she has to have this pain. All she has to do is hold out until ten, and IT’S PAST TEN! My daughter is in pain, can’t you understand that! GIVE MY DAUGHTER THE SHOT!
Whilst I was with Vic I smiled, I encouraged and placated…the minute I walked out of Vic’s hospital room God help the sister or doctor I got hold off… Doctors made U-Turns when they saw me waiting for them; Brendan actually said he was scared of me and would not want to bump into me in a dark passage.
But that is what Mother’s do. We fight for our children. We protect them at all costs and with total disregard to the rest of the world.
Living with a terminally ill child is devastating. I wanted to fold Vic into my arms, lock out the world and the disease, and protect her from pain. In the real world we fight with our dying child to keep on fighting, look after themselves, to do what we believe is right… We fight for them, with them…..We fight for their lives.
This fragile balance and relationship is beautifully depicted in Terms of Endearment when the mother (Aurora Greenway) says: I just don’t want to fight anymore.
Emma Horton: That’s because you’re never satisfied with me.
Vic often used similar words. She would never “space” herself. Half a breath of oxygen in her lungs and she was driving and organising a party. I would fight and remind her that driving (under the influence of humungous quantities of morphine) invariably lead to a fractured vertebrae or two…
“Don’t fight with me Mommy” she would say.
The most moving scheme in the movie is when Emma says goodbye to her sons. In the two years, before her dying, her eldest son had withdrawn from her.
Emma Horton: I know you like me. I know it. For the last year or two, you’ve been pretending like you hate me. I love you very much. I love you as much as I love anybody, as much as I love myself. And in a few years when I haven’t been around to be on your tail about something or irritating you, you could… remember that time that I bought you the baseball glove when you thought we were too broke. You know? Or when I read you those stories? Or when I let you goof off instead of mowing the lawn? Lots of things like that. And you’re gonna realize that you love me. And maybe you’re gonna feel badly, because you never told me. But don’t – I know that you love me. So don’t ever do that to yourself, all right?
Vic was so worried about Jon-Daniel. He withdrew during her very ill spells. I remember the one night when she crawled into bed with me. She was crying bitterly. https://tersiaburger.com/2012/05/23/23-5-2012/ She spoke about how Jon-Daniel would suffer from guilt after she died. “Tell him I say thank-you for making me laugh”
In the dying scene Emma folds her hand under her chin. Vic always slept with her little hand under her chin.
This post is all about pain and the myths and realities in hospice care
Palliative care usually starts too late. We see it on a daily basis at Stepping Stone Hospice… Most patients die within days of becoming patients. Doctors continue to treat the patients until days before their death. Referring a patient to Hospice means “conceding defeat”.
If patients were timorously referred to Hospice they would enjoy far greater quality of life than they do without. It is a total fallacy that Hospice patients die sooner than non-hospice patients.
Survival Periods For the entire sample of all disease cohorts, the mean number of survival days was eight days longer for hospice patients than for non hospice patients (337 vs. 329 days, P ¼ 0.00079). This difference includes the effects of many factors including demographics and sample sizes of the two cohorts. When we normalized these other factors, the difference in days increases to 29 days, as we show later in the regression. The survival period was significantly longer for the hospice cohort than for the non hospice cohort for the following diseases: CHF (402 vs. 321 days, P ¼ 0.0540), lung cancer (279 vs. 240 days, P < 0.0001), and pancreatic cancer (210 vs. 189 days, P ¼ 0.0102). The survival period was longer for the hospice cohort than non hospice cohort for colon cancer, and the difference approached but did not reach statistical significance (414 vs. 381 days, P ¼.0792). http://www.nhpco.org/sites/default/files/public/JPSM/march-2007-article.pdf
World Health Organization (WHO) definition of Palliative Care Palliative Care is an approach that improves the quality of life of patients and their families facing problems associated withlife-threatening illness, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
I reposted this amazing article/post By Terre Mirsch on the myths surrounding Hospice
Unmanaged pain is one of the greatest fears of those facing serious illness and is the reason that many choose hospice care. Uncontrolled pain causes suffering and significantly impacts quality of life and total wellbeing. Pain may also lead to other problems including difficulty sleeping, fatigue, poor appetite, and a compromised immune system. Persistent pain can also lead to social isolation, depression, anger, and anxiety. Spiritually, one may begin to question the meaning of the pain and wonder “Why is God doing this to me?”
The good news is that living with advanced illness does not mean that one has to live with uncontrolled pain. The majority of time, pain can be controlled by relatively simple means using easy to administer medications. But caregivers often worry that they do not have the knowledge and skills, or the confidence to administer the proper medications or treatments prescribed for their loved ones.
Misconceptions about pain and commonly used medications may create barriers to controlling pain effectively. Understanding what pain is, how it can be effectively managed, and alleviating common misconceptions is the first step towards reducing these barriers.
Myth:“My loved one doesn’t look like he is in pain. That must mean that the pain is not that bad.”
Reality:In 1984, pain research expert, Margo McCafferty defined pain as “whatever the experiencing person says it is, existing whenever he says it does.” We cannot tell if a person is having pain by looking at them. Only the person having pain knows how it feels so it is important that we ask the person if they are having pain and how it feels and we need to listen to their answer.
Myth: “It is best to wait until the pain is severe before taking pain medications.”
Reality:It is best to stay ahead of the pain by taking medications around the clock when treating persistent pain. The longer pain goes untreated, the harder it is to ease. If the prescription says to take the medicine at certain times or at certain time intervals (for example, every four hours), make sure this is done.
Myth:“People who take strong narcotic pain medication become addicted.”
Reality:Opioid analgesics (also referred to as narcotics) are highly effective for many types of pain and can be given safely. Addiction is defined by a compulsive craving and use of a drug, which results in physical, psychological, and social harm to the user. Addiction is NOT a problem for people who take opioid medications for persistent uncontrolled pain.
Myth: “When people with chronic pain are treated with strong pain medications, they will have to take more and more medication as time goes by to get the same pain relief.”
Reality:Most patients take stable dosages of medication. Increases in medication dosage may result from worsening physical status. Sometimes tolerance develops and more medication is needed. It is important to understand that there is no highest dose for the amount of opioid medication that can be prescribed – there will always be something more that can be given to achieve comfort.
Myth: “The side effects of strong pain medications make people too sleepy.”
Reality: The goal of pain management is to achieve comfort while maintaining optimal alertness. Side effects of drowsiness will reduce or disappear within a few days. The most common side effect is constipation which can be controlled with a regular routine of medications aimed at keeping bowels regular.
Myth:“Once you start taking morphine, the end is always near.”
Reality:Morphine does not initiate the final phase of life or lead directly to death. Morphine provides relief of severe, chronic pain, promotes relaxation and comfort, and can also help to make breathing easier. Morphine does not lead to death. Morphine does not kill.
Good pain management improves quality of life and may even extend life. Palliative care and hospice professionals can provide you and your loved one with expert help that can help to manage the physical and emotional pain of life limiting illness. Caring for a loved one in pain can be difficult but with the right guidance and understanding, both you and your loved one can experience the comfort and support you deserve.
I know that Hospice provided my child with life. I believe that Vic would have died months earlier if she had not been treated by Hospice. It is a basic human right to die with dignity. I am grateful that Vic had the privilege of dying with dignity.
Yesterday morning I teared up – again. Danie asked “And now? What’s wrong?”
“Just missing Vic” I said
“Shame” he said with sadness in his voice. “I miss her too”
We spoke about how my grief had changed over the past four months. Today it is exactly four months since my precious child died. I keep using the words “death and died” and not the gentler “passed”… I do that because death is harsh. My child DIED, she is DEAD. My pain is as real as it was 4 months ago. My grief is however no longer as transparent as it was to the world.
Four months ago when Vic died my body physically hurt. My heart was physically aching. The pain was new. Now my grief is in me, part of me as if it is a limb or organ… My grief is hidden from the world. If I did not tell you, you would never know.
To the world – I seem to have adjusted to the loss of my child. I am “functioning, smiling, carrying on with life”… People are so relieved that they no longer have to cope with my raw grief…
“I never knew my mind could be dominated by a single thought every day for years and still not get in the way of the progress of my life. The hands on the clock continue to turn, and the sunrises every morning.
Even though the grief is not on the surface, the missing is as strong as it ever was. We can’t explain it, but we want to share it. We might not break down, but the strength of the grief never fades.”
We just keep on living with it and do the best we are able to do.”
I miss Vic more today than I did four months ago. I keep looking at photographs of the past couple of years so I can REMEMBER her suffering; I re-read my blog to REMEMBER her suffering; I keep trying to find solace in the fact that she is pain-free. It is becoming more difficult to see the positive side of Vic’s death. My mind is blocking out the horror of her suffering! I am remembering the good times only.
I hear you say “It is good” No, It is not good! If I forget her suffering I will never accept the “need for her to die” element of Vic’s death.
My sister shared her heartbreak with me…She said that one night when she slept with Vic she woke up to hear Vic talking to me. She said Vic was crying and saying “Mommy I am so sore. I can’t do this anymore” Lorraine said she kept her eyes shut and pretended to sleep because she could not deal with the moment… Why am I forgetting?????? On the 13th of November I posted “Will my poor baby’s hell ever end? If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!! This has come to an end!” https://tersiaburger.com/2012/11/13/signposts-for-dying/
I want my child back with me. I want to hold her, tell her I love her. I want to hear her footsteps in the passage; I want to hear her voice…