“Mommy, I’m not afraid of dying. It is the pain that scares me…”
The four most common fears of the terminally ill are:
Death will be painful
Vic the same physical, emotional, and spiritual needs as everyone else. Her biggest fear is however the pain that will be involved in her inevitable death. As distressing as the physical pain, Vic battles constipation, diarrhoea, nausea, vomiting, weakness, loss of dignity and loss of appetite.
The average physician and pharmacist’s concern is addiction! So what? Addiction at this stage of the game is the least of my problems. I do however believe that Vic has become morphine resistant. In hospital last week Pethidine and Perfalgan worked well. This is one of the reasons why it would be great to have Hospice involved in her pain management.
The Pain Clinic is great but they see Vic every couple of months. In the past 10 months I have collected her monthly morphine script on 7 occasions. Thank God they have enough empathy for Vic and enough realisation of her health situation to give me the script. The problem is how much more than 400mg of MST (morphine) twice a day can they prescribe?? Imagine if I had to drag her to the pain Clinic every 28 days…
I honestly believe that family involvement is imperative with someone as ill as Vic as she or any other terminally ill person simply cannot manage these situations alone. Family members closely monitor the effectiveness of pain management. I take Vic’s vitals a minimum of 3 times a day. Her blood pressure and heart rate are clear indicators of where her pain levels are at. I know her body better than any other person, nurse or doctor… I cannot imagine a terminally ill person having to fight for pain medication.
Loss of dignity and control.
Vic desperately wants to participate in ordinary daily activities such as being able to eat with someone; to walk to the bathroom and use it in private, unaided; to talk with a friend; to watch a favourite TV show; to hold her children.
Imagine just for one minute your mother having to help you bath, apply deodorant, dress and undress… Vic has to endure this indignity every day of her life.
Nights are especially poignant. Sleep difficulties abound, not only because of physical pain but also because of fear of sleep, fear of not awakening out of that sleep. One night spent with a dying person could teach all of us, in some measure, the depth of human loneliness, anguish and fear which our own dear ones experience in the brief span of life left to them. Vic sleeps badly at night. She wakes every two hours from pain and then she is too scared to go back to sleep. She refuses to take a sleeping tablet. At night Vic is at her most vulnerable… I am so scared that she will fall at night whilst we are sleeping.
What if Vic is nauseous and chokes in her own vomit sleeping?
That loved ones will be damaged and unable to manage
Vic worries about the family’s ability to cope with her illness and eventual death. When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…
Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”
No amount of reassurance will comfort her…Vic in time will have to let go. She knows how deeply we love her and what void her passing will leave in all our lives. If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?
Vic is quite hard on the boys (for their own good I must add). She always says “I am your Mother not your excuse”
If children are involved that they will not be looked after properly.
Vic believes that no-one can ever love the boys the way she does. That is true. I am not a particularly “oochy goochy” person. At times I believe I failed Vic as she has an emotional neediness that scares me. I attended 12 different schools in my life and maybe this is why I battle to form emotional attachments. I don’t have many friends. My family is everything to me.
Vic however often says that she is happy that she moved back home as she has seen how settled the boys are. They are truly happy living with us.
Vic knows that I will care for the boys for the rest of my life. We will guide them and provide for them in every which way. We love the boys with all our hearts.
The question that remains is whether she trusts us enough to let go of this pain filled life where she has lost all control and dignity? I pray that she will…
I have been researching the effect of a mother’s illness on her children. The boys are two beautiful, well-adjusted, honest and compassionate young men. Vic’s illness has certainly deprived them of a childhood in the true sense of the word and prematurely matured them into compassionate, caring, young men far too early in life. At the tender age of thirteen Jared was cooking for the family… This must certainly have an effect on how the boys perceive relationships with people.
Now according to my research the boys have become what is called ‘parentified’ children. These children solve the problem of sick and inadequate parenting by taking care of their parents. They in effect become p
arents to their parents, giving to the sick parent what they need from the parent. Now the roles are reversed. This seemingly creative solution is unfortunately too self-sacrificing to be healthy in the long run.
“‘Parentified’ sons who take care of their sick mothers in order to cope with their inability to parent, struggle to suppress obvious needs for love and feelings of loss. They learn to work hard taking care of the needs of others and living off of the scraps that come in the form of reinforcements for their competence and reliability. Their needs for love are overlooked and overshadowed by everyone else’s needs.” The boys, especially Jared, falls into this category 100%. When his little girlfriend was hit in the eye by a hockey ball, he immediately went into caregiving mode, At the time I thought it to be extremely unhealthy that he already has this caregiving character trait. He used to always make the tea and offer to do so much around the house and for his Mom.
I have put a stop to this. I pray it is not too late for the boys to adjust to a “normal” household…
It is however important for them to realize that death is a part of the circle of life and that it is not something dark and something to be feared but rather, if happening in a timely fashion, something that one can embrace. The boys appreciate and respect Vic as their mother. Vic has raised her sons to be respectful.
“The power of a mother’s strength comes from her heart, from her unabashed, unconditional, and unwavering love for her child. There is, as J.K. Rowling wrote in her Harry Potter books, a magic in that love. No matter what happens, a mother is always there for her child. A mother’s love is never to be questioned, and – though she may not know it at first – neither is her strength.”
Vic literally rose from her deathbed to be there for Jared with his operation on Wednesday. When my Mom died I related her final moments to someone jumping from a diving board into a deep pool, reaching the bottom and kicking to rise to the surface of the water for one more breath… only to sink again. This is what Vic does.
Before Jared was wheeled into theatre he whispered into his mom’s ear. She took his hand and said “I promise”.
The surgeon said the operation would last two hours. Vic dutifully went back to bed and rested. One hour and forty-five minutes later she was, IV drip in hand, standing outside the theatre door, waiting for her son. I begged her to at least sit on the chair but she refused. “Mommy, I promised Jared my face would be the first thing he sees when he comes out of theatre!”
It took a superhuman effort but Vic’s love for her son drove her to keep her word. It is true that no mother wants her child to suffer in any way, but life is unfair like that. So, we as mother’s do what we can to provide support, comfort, and protection. And we grow strong enough to bear their hurt as well as our own. As Vic did. As I do. Motherhood cuts deeply, brings you to your knees most days; but it also brings a strength that may surprise you.
The vicious cycle of anger truly rose to the occasions on Wednesday. I got angry with Vic because she was not putting her health first! I KNOW I would have done the same but it was terrible seeing my child do herself harm to be a Mother. I want to wrap her in cotton so she would be spared that extra day…
Yesterday Vic said she doubted whether she would see the end of the year. She is however adamant to be at Jared’s confirmation…one more goal…
Go Girl!!!
Well, Vic is home. I am so grateful. She is conceding that she is too sore and ill to go to hospital…Saturday Jared comes home!!
I thought Sunday to Wednesday was a nightmare but boy oh boy come Wednesday morning and my child became a terror! The “my son really needs me” adrenaline kicked in and Vic was uncontrollable!
She was out of bed, marching into Jared’s ward as if she was the healthiest person in the world! I was at a total loss. My dearest friend Gillian wrote me a message: “What a wonderful mom. Her child comes before her illness. Will
not let go until her kids are okay. You can be very proud of your daughter”… My reply was: “Yeah – too cross with her to give her any credit at this stage”
Vic cannot pace herself. Like on Sunday, she will be like a jack-in-the-box and when the moment is over, crash! In this super human effort to be there for Jared she causes so much stress to everyone around her. Jared stresses because she fusses around him, I stress because she is overdoing things again and I know there is a severe penalty to be paid for that, Jon-Daniel stresses for both them! Danie stresses for me… I get irritated with Danie for trying to protect me…. It is a vicious cycle of nerves!
Jared’s operation went very well. The poor baby was in so much pain but stoically brave! Not a whimper!! I am so proud of this beautiful boy. I was a little concerned for his emotional well being after Sunday. He cried with fear and frustration for his mother.
Vic was up and down the passages last night checking on her son! This morning Jared said “Oumie I am so tired. Mom kept coming in and touching me…” Vic means so well! She wants to be there for her children but often does not understand that she is the sick one. Her actions stress us out. On the other hand, I must admit, that I was more at ease knowing that Vic was in the same hospital as Jared and able to check on him…
It is such a heart wrenching situation. Vic wants to be a mother and I want her to be a child!! When she is okay she can be whatever she wants’ to be. When she is ill I want her to become my baby again… Vic is an amazing mother. She loves her boys with every fiber of her body. She has fought to stay alive for the boys. Who am I or anyone to deprive her of this wonderful privilege? At the end of the day it is her reward for surviving the odds…
On Monday the physician cancelled the bloods he had ordered and agreed that palliative care was the only route to go… I don’t think he thought she would leave the hospital alive… On Wednesday Vic was looking out for her son…What a brave woman my child is.
Vic was discharged from hospital this morning. It is Thursday.
Vicky is super-human!
The focus today was Hospice.
The physician came in today and suggested that once Vic is well enough to be discharged we should have her admitted to a Step-Down facility. A Step-Down facility is an in-between Hospital and Home facility…How wonderful would that be!
Vic refused.
Well, the meeting with Prof Froehlich went quite well, if she keeps to her commitment! She will engage in a discussion with the Pain Clinic’s Social Worker and Home Nursing Representative who deals with Hospice. I also got a letter from the Physician and Orthopod treating Vic at the Union. I will submit these letters to Hospice and if they refuse to treat Vic I will take them to the Constitutional Court. So help me God I will not give up!
Jon-Daniel posted on his BBM status that “No child should ever hear their mother cry from pain”. No child should have to. I know that Sunday evening’s fall (Hero to Zero) will haunt the boys and me forever!
Vic is just a bundle of pain today. Danie sat with her whilst I was at the Pain Clinic. We insisted that the boys go to Gold Reef City as planned. Jared needs to get his mind off his operation and Jon-Daniel needs to be with his big brother. They were traumatized by Vic’s fall. I hope they have a wonderful day!!
Tonight we planned on taking them to dinner as it would the last good meal that Jared will have in many months! Maybe I can find someone to sit with Vic. Jared’s surgery is major. It is to repair an underdeveloped reflux valve, hiatus hernia and creating a junction to tummy due to scar tissue formed from burning. I have a lot of confidence in the specialist surgeon. My biggest concern is how I am going to keep Vic in bed…Fortunately they will both be in the same hospital!
I am so tired. I have slept in a chair at the hospital and have no intention of leaving until Vic can cope without me. Hospitals are noisy and Vic is in so much pain when she moves!!
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 spoilsport 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 was reduced 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 additional pain meds 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.
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 renaged 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 personnel 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.
Vic's Final Journey 