“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…
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.
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…
Vic's Final Journey 