The four most common fears of the terminally ill are:
- That death will be painful.
- Loss of dignity and control.
- That loved ones will be damaged and unable to manage
- If children are involved that they will not be looked after properly.
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 parents 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…
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!
Today was a mixed day. Although Vic seems marginally more ill and weaker than yesterday she was more upbeat. When the boys got home we all had tea with her and the boys joking brought a smile to her beautiful little face. For approximately fifteen minutes there was easy banter in her room. What a change – our conversations tend to revolve around bowel movements and the color of vomit.
Lying on her bed with me I realized how small our world has become. Vic’s days consist of Eat, Sleep, Vomit or Eat, Sleep, Tablets – one of the two combinations. It is amazing that she has not developed bedsores yet.
The Concise Oxford Dictionary defines euthanasia as being “gentle and easy death; bringing about this, especially in a case of incurable and painful disease”.
I have a simple theory. Most people who are terminally ill and of full mental capacity are able of ending their own lives at one or other stage of the disease. The terminally ill are able to take that extra dosage of morphine themselves. The vast majority of people have an incredible desire to live and will live through pain and suffering and continue to breath! Euthanasia is not the issue… You really want to die, you will find a way to die
In the event of a patient suffering from a disease or illness that incapacitates them i.e. motor neuron disease where the patient is ventilated or the patient was left severely brain damaged from an accident, life sustaining treatment should not be allowed. If doctors are allowed to prolong lives should they not be allowed to end life? I firmly believe that doctors do not know when to give up. Vic’s Dad, Tienie, had severe brain damage after a car accident and yet the ICU team resuscitated him after the brain damage had been confirmed! Why??? What is the purpose of breathing when you are not able to walk, love, talk, breathe on your own?
Professor S A Strauss in his book Doctor and Patient Law, 1984 edition published by J L van Schaik on page 387 states that “in principle every person is legally entitled to refuse medical attention, even if it has the effect of expediting his death. In this sense the individual has a right to die’. All that is required is that the declarant, at the time of making his refusal known, is compus mentus…
In the case of Vic she is on 400mg of morphine twice per day and takes 25ml of morphine syrup every 4 hours for breakthrough pain. Vic has become morphine resistant and the dosages are increasing to keep her incredible, debilitating pain at bay. Surely the dosages of pain medication that she is on must become lethal? I know that it is Vic’s doctor’s primary intention to make her life as comfortable as possible by the administration of pain alleviating medicines. Yet the mercy shown to her may have the side effect of hastening death… Please do not misunderstand me – If I knew how to pray I would pray for her suffering to end!
Vic has a living will with a DNR (Do Not Resuscitate) clause. I will ensure that it is enforced if the “need” ever arises.
Sometimes I am scared Vic will not die – that she will continue to live, no breath, in this hell that we call life. The bottom line is however that Vic will NEVER take an extra dose of morphine and NO ONE will ever administer an extra dosage of morphine. We all fear God’s retribution for murder… both the terminally ill and their caregivers.
As my dear friend Mohammed says:- her life is in the hands of her God. We can speculate as much as we like, we have absolutely NO control over life.
I hate seeing Vic suffer but I so cherish the 15 minutes we had today. Fifteen good minutes in two months…I know I would have taken that extra dose of morphine a long time ago if I was her her shoes.
28 days medication….
I started this blog because I don’t trust myself to talk. If I start crying I may not stop. Actually I don’t have too many people to talk to. For the past 10 years we have been waiting for Vic to die. Initially, I think, people believe, that holding a dying person’s hand in the final hours is “romantic” but then the person doesn’t die…and the world moves along. People carry on with their own lives. That is just the way it is. People battle to handle the emotion, the waiting, the suffering. And it is okay for them to move on.
It is not only other peoples fault’s. I don’t have time to visit, go for coffee, phone… It is a constant juggle between Vic, the boys, work, hospital, pain clinic, family. Many of my old friends must think I deserted them. Maybe I have but time in every which way has deserted me.
I have been moved by old friends and acquaintances sending me messages of support. Thank you all. I had no idea that people would actually read my blog.
Earlier today I read an blog written by Michael Wolff, a writer, where he beautifully articulates this dreadful struggle to die. He writes about witnessing a loved one’s inexorably slow, modern-medicine-propped decline and suffering that endlessly stops short of death. It is so true. I cried. http://www.caring.com/blogs/fyi-daily/the-long-long-too-long-goodbye
Good news! Prof Froehlich phoned yesterday and said that Vic and her situation has haunted her. She will do an experimental “procedure” on Vic next week. Monday to Friday Vic will go to theatre for 5 hours a day for a Ketamine/Lithium/something else infusion. Hopefully it will erase the “pain memory bank” and her body will lose some of its opiate resistance. That will be so merciful!! Vic takes 400mg of morphine, in tablet form, twice a day. She also takes Stilpayne, Panado, Degrenol, Neurontin, Buscopan, cortisone twice a day with 25ml morphine syrup every 4 hours for breakthrough pain. The meds is not what is causing her sleeping.
Vic sleeps 95% of the time. When she is awake it is to whimper or vomit.
Jared has started to display symptoms of severe stress. His school marks are dropping and he doesn’t sleep. Like me, he is awake every couple of hours to check on his Mom. Jon-Daniel doesn’t talk. He just carries on. I worry about him – how will he handle The Day, when it comes?
In the movies the Judge says, when handing down the death sentence: “May God have Mercy on your soul” – I pray that God will have Mercy on our souls. Especially on Vic and the Boys souls…