Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Ultimately, many will reach a point where medical technology may be able to keep them alive but can neither restore their health nor even improve their condition.  In actual fact they are merely kept breathing….   More treatment will only prolong their dying.

It is at this point that patients and families face difficult choices about the kind of care they want….

I have seen studies that clearly show that patients who access Hospice, earlier in the disease process, actually live longer than expected. Ironically it seems that Hospice, with its emphasis on quality of life, actually keeps people going. When people who are ill have good pain and symptom control and their caregivers are well supported, they don’t want to give up; they want to live longer.

Vic has reached a stage in her life where she wants to die.  She has absolutely no quality of life and is growing weaker by the day. Everyday Vic loses a little more of her independence and dignity.  Vic needs help with almost all her day-to-day activities.

Opinion polls decisively show that most people would prefer to die at home, free from pain and surrounded by their loved ones.  Sadly people often die alone in hospitals or nursing homes, attached to life support machines they do not want.  It is also a fact thatmany terminally ill people die excruciating painful deaths because, even in death, their doctors suffer from Opiophobia…

“Opiophobia is the syndrome of failure to administer adequate opioid analgesics because of the fear of producing addiction or toxicity. The etiology of opiophobia is multifactorial: Peer pressure (provider and patient), regulatory agency pressure (real or perceived), and lack of education on opioids and the fundamentals of pain management all contribute to its persistence…. All of these factors contribute to the underuse of these relatively simple and very effective medications, due to no fault of the patients. ” University of Wisconsin textbook on pain medicine, Bonica’s Management of Pain, 3rd edition:

I promised Vic no more surgery and no more hospitals. https://tersiaburger.com/2012/06/01/1-6-2012 The only humane option left is Hospice.  I have been fighting for Hospice to get involved with Vic’s palliative care not to hasten her death but to enhance her quality of life!

WHAT IS PALLIATIVE CARE

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten or postpone death;
• integrates the psychological and spiritual aspects of patient care;
• offers a support system to help patients live as actively as possible until death;
• offers a support system to help the family cope during the patients illness and in their own bereavement;
• uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
• will enhance quality of life, and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. http://www.hospicepalliativecaresa.co.za/What_is_palliative_care.html

WHAT TO EXPECT
Should the patient be accepted onto a hospice programme, the Hospice team together with the patient will develop a tailor-made plan care plan. Usually patients are visited by the hospice staff in their own homes. The care and support of the hospice team will help the patient and family as they navigate their way through the challenges of living with a life-limiting condition.

The main things hospice can help with are:

• pain and symptom control
• psycho-social support and advise
• spiritual support
• emotional support
• bereavement support
• equipment (wheelchairs etc)

The challenges that we as a family must face with Vic’s terminal diagnosis is complex. It includes evolving new structures and dynamics as the person we love very, very slowly slips away.

Last night and again tonight, Vic said to me “Mommy, I know you think I will live forever but you must prepare yourself because I know how my body feels…”

As a family we have learnt to cope with setbacks, Vic’s health steadily deteriorating and  periods of seeming remission. This “extended grief”, wears us down and leads to the horrible realization that we sometimes find ourselves wishing that the process would end…. I have often said “Sometimes I am scared Vic will never die…”  I do not want my child to die.  I merely want her suffering to END!

As a family we have moved into a phase where the stress of the situation can no longer be ignored.  It is making all of us ill.

This week has been an emotional roller coaster!  On Tuesday I cried in front of a strange doctor.  Wednesday I felt that I was losing the plot.  I was unable to function on a professional level.   My mind was absolutely fogged over.  Thursday an angel named Christa evaluated Vic and I went from absolute despair to exuberance when I heard that Hospice’s Doctor would evaluate Vic on Monday morning…

Today when Jared and I were waiting to see the doctor after his CT scan we had a long chat…

He said “Oumie I can see when you are stressed.  You zone out…  You have been very stressed this week….”

“Yeah” I said.  “I have been a little stressed this week.”

“Since you starting writing your blog you no longer wear a mask Oumie…You handled the stress better before!  You always smiled.”

OMG.  What am I doing to the boys?  I realized today that I have to be more careful.  The mask has to go back on.  I scare them when I show my stress.  Imagine what it would do to them if they read my blog…..  Thank God they don’t!

I left the best for last though – no immediate lymph biopsy will be done on Jared.  The lymph nodes are definitely enlarged but there has been no adverse change in the past two and a half weeks.   We will give his kidney some time to heal and the CT scan will be repeated again in two months time.

I am feeling so positive!

There is a God and I thank him for Jared’s outcome, Hospice intervention, Baby Isak and my wonderful, loving family.  I pray that He will enfold Vic and the boys in His Mercy and Grace.  I pray for my mask!