“Mommy, I’m not afraid of dying. It is the pain that scares me…”
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…