“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”
–Dame Cicely Saunders
Tag: Hospice
Mommy, I thought I had more time….
“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.” –Dame Cicely Saunders
The Hospice doctor that called to see and evaluate Vic was a tall, slim young woman. She has a gentle voice and long fingers with short nails. She drives a Jeep and keeps large dogs. She looks like a naturalist.
“I am Dr Sue Walters from Hospice. The Pain Clinic asked us to see you. Is it okay for me to examine you?” she asked Vic in her gentle voice.
Vic’s abdomen was severely distended and very tender. She was running a fever and her resting heart rate of 103 indicating severe pain despite the fact that she had already taken her pain medication. Vicky’s vitals were poor.
Sue administered a strong morphine injection.
“Vicky, you appear to have an abscess on the right-hand side of your abdomen. The skin is hot to the touch and distended. I think you have a partial obstruction.” Dr Sue said to Vic.
“I am here to see if Hospice can help you. Do you realize that you are very ill my love?” Dr Sue asked Vic.
“Hospice will not hasten your death my love. It would be our aim and purpose to provide you with pain relief and quality of life. We will treat you and not the disease. It is exclusively your decision whether you want us to help you and how you want us to help you.” She explained to Vic
Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to help patients live their last days as alert and pain-free as possible. Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered — it includes the patient and the family in making decisions. http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care
Vic was in so much pain that she was barely able to speak. Tears welled up in her eyes and she softly said “Please doctor”.
“My love, you need to tell us how you want us to treat your symptoms such as obstructions?” Dr Sue asked
“I want no life extending treatment. I am so tired doctor” Vic whispered. “I can’t do this anymore…..”
“That’s fine my love. We will try and relieve your pain and give you some quality of life.”
“Mommy I thought I had more time…” Vic said with tears silently running down her cheeks…… Then the injection kicked in and she drifted off to sleep.
Dr Sue said that the responsible sister would collect the morphine from the Hospice pharmacy and she would set up a subcutaneous morphine syringe system by that afternoon. Hospice would arrange for counseling for the boys.
She hugged me and left. All of a sudden I felt so alone again!
Subcutaneous, or under-the-skin, injections use a needle to deliver medications into tissue just under the skin. An infusion of morphine, anti-nausea medication and Dormicum is now administered 24/7.
The first couple of days Vic slept a lot. She was tired but there was immediate pain relief.
The nausea subsided and the partial obstruction cleared two days later!
The first infusion site was in her leg. Within a day and a half the area “tissued”. A common side effect associated with subcutaneous injections is injection-site reaction such as swelling, redness, and pain. We phoned Hospice and the Nurse promptly came and the needle was reinserted into the arm. Within two hours the needle came out again and the morphine was running onto the skin. It was too late for the Hospice Nurse to return and to re-insert the needle so Vic went to the doctor and he relocated the needle into the abdominal area.
Last night the tissue in the abdominal area had tissued again. It was also bloody and the morphine was running onto the skin and not into the tissue. Vic was nauseous with pain. I had no option but to remove the needle and re-inserting it into a different site.
“I think we should put it into the other side of your tummy” I said
“Mommy, I will insert the needle if you help me…” Vic replied
“No sweetie” I said. “I will do it”
My heart was in my throat. I removed the needle and cleaned the injection site. I disinfected the new site that I had identified. I took the needle in my hand and lifted the skin. I pushed the needle against the skin. I assumed that the needle would just slide in… It did not just slide in! There was resistance!! I let go of the skin and changed my position. I could hear and feel my heart pounding in my ears! I again took my child’s skin between my fingers and pulled it upward.
“Maybe I should relax my hold onto the skin…maybe the skin must more relaxed?…..” I thought.
I exerted pressure on the needle and it slid in… Sweet success!!!!
“Oh Mommy you are such a star! Thank you. That did not hurt at all!” Vic gushed.
I do not believe her. I had felt her little body tense up as the needle went in. It hurt!
My entire body shook. The bile rose in my throat and I slowly let out my breath.
We have all come such a far way. Until last night I could not watch anyone stick a needle into my child. Now I have stuck a needle into my child’s flesh. I fear that Vicky’s tissue is too poor for us to continue on the subcutaneous route…… If we do I will have to do this many more times in my life.
The good news is that I was actually able to work the whole week. It was the annual African Air and Defense Show and we exhibited. Normally I would be absolutely frantic about Vic. But I was okay with the fact that she is relatively pain free and the nursing sister visits every two days.
Vic is far more active. She is truly so much better. The partial obstruction appears to have cleared! She spends time chatting to the boys. On Saturday she took Jared shopping for a new shirt and shoes!
On Sunday morning Jared lit candles “For those we have loved and lost but will forever be in our memories♥..Gramps, Oupa Tienie, Ouma, Nan and Oupes♡” Vic handed him his baptism candle that she received 15.5 years ago at his christening. He lit his candle as he took responsibility for his own walk with God. Vic and I laid hands on him and prayed for him. It was so touching.
Vic attended Jared’s confirmation service. I have never seen a more radiant and proud mother in my entire life.
Vic has reached another milestone in her life.
Pain keeps you alive!
She explained to us that Vic’s pain is what is keeping her alive. ”An adrenaline rush is the fight or flight response of the adrenal gland, in which it releases adrenaline (epinephrine). When releasing adrenaline, one’s body releases dopamine which can act as a natural pain killer. An adrenaline rush causes the muscles to perform respiration at an increased rate improving strength. It also works with the nervous system to interpret impulses that trigger selective glands.” http://en.wikipedia.org/wiki/Adrenaline_Rush
Pain keeps you alive!
Vic has been accepted into the Hospice program. The doctor evaluated her at 07h00 this morning and immediately gave her a strong pain-injection. She also put on a 75mg Durogesic patch. Vic will remain at home. We now have access to nursing professionals 24/7. A subcutaneous infusion will be set up this afternoon for the administration of all further pain medication . Vic will no longer drink any tablets.
Vic has a partial obstruction and an abscess in the abdomen.
-
The continuous subcutaneous infusion of drugs by a small portable pump (sometimes called a “syringe driver”) is a major advance in terminal care, particularly for symptom control in the home. It has a number of advantages over intravenous therapy. It is safer (much less risk of infection and no risk of air embolus). The patient can remain fully ambulant. Tolerance does not develop to subcutaneous morphine as it does occasionally to IV morphine. (see Morphine)
The main indications for continuous subcutaneous infusions are vomiting, dysphagia, severe weakness or unconsciousness. They can be particularly useful for patients at home, either to control nausea and vomiting, or during the last days of life if the patient is no longer managing oral medication.
A continuous subcutaneous infusion of drugs is particularly useful in the management of malignant intestinal obstruction. (see Intestinal Obstruction) http://www.hospiceworld.org/book/subcutaneous-infusions.htm
In the words of Dr Sue Walter, MBBCH/PALLIATIVE MEDICINE, “Vic’s suffering is inhumane”.
She explained to us that Vic’s pain is what is keeping her alive. “An adrenaline rush is the fight or flight response of the adrenal gland, in which it releases adrenaline (epinephrine). When releasing adrenaline, one’s body releases dopamine which can act as a natural pain killer. An adrenaline rush causes the muscles to perform respiration at an increased rate improving strength. It also works with the nervous system to interpret impulses that trigger selective glands.” http://en.wikipedia.org/wiki/Adrenaline_Rush
Maybe this is the final part of Vic’s journey. I do however expect her to bounce back!
Palliative care
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!
Vicky Qualifies as a Hospice Candidate…
Just seconds ago I was thinking “What a glorious wonderful day…” when the thought crossed my mind “Hang on a minute…. It is a glorious day because Hospice have agreed to evaluate my sick child????”
Hello!!! How sick is that that our lives has degenerated into a hellhole where Hospice is good news!!
This morning Christa, an internationally acclaimed pain expert, came to evaluate Vic at home. She spent a lot of time with Danie and me to build up a case history on Vic. Christa works for Janssen Pharmaceutical Company as a “Medical Scientific Liaison: Pain”… Part of her responsibilities is to liaise and advise the Pain Clinic and Hospice as an expert!
It was as if a floodgate opened. I rambled on about Vic’s (health) background, history, symptoms, operations, treatment and decisions. I showed X-Rays and photo’s of Vic abdomen at different stages of Vic’s 10 year journey. She was shocked to hear that Vic spends 95% of her life in bed. That she is too tired to even read.
Christa told me that Prof Froehlich had phoned her the previous day and told her that “Mrs Bruce’s mom is in trouble…” https://tersiaburger.com/2012/09/12/pain-clinic-11-9
I should have cried earlier. I have been fighting for months to achieve this! Then when I give up my fear, exhaustion, stress and defeat obviously showed… Maybe it is the new doctor who has not been desensitized to the suffering of the patients… Maybe there is a God of Mercy after all.
After chatting to us and taking copious notes, we got into Vic’s pain medication regime. I told her about this wonder drug, Jurnista. She just smiled and told me that Janssen’s manufacture Jurnista! I am amazed that she consults for the Pain Clinic and Hospice and they don’t have the budget to supply Jurnista!
I eventually took her to meet Vic. (Shame poor soul got such a fright when I woke her). She examined Vic briefly, spoke some and made wonderful sympathetic sounds. I introduced her to Jared who was in bed as he was in too much pain to go to school.
She explained to Jared that she was here to evaluate his mom and would be making a recommendation that Vic be accepted into the Hospice program. She also told him we, as a family, needed to have some counselling. The psychiatrist would come to our home…. Jared told her that his pastor’s wife was coming to see him in the afternoon…. I smiled. I know the boys so well. They automatically put up barriers when they hear the word “counselling”…. (It was really the truth – Mrs Pastor did visit. First visit in 4 years from Vic’s church…)
Christa wished Vic well, hugged me and said “Vicky clearly qualifies for palliative care. I will talk to the Hospice Palliative Care doctor and recommend that they accept Vicky into the program. I will phone you this afternoon”
At 5 pm this afternoon Christa phoned to confirm that the Hospice doctor will evaluate Vic on Monday morning at 7 am! I read somewhere that terminally ill people often feel that upon entering the Hospice program they go from “dying from….” to “living with….” It is my heartfelt prayer that this will be the case with Vic.
Tomorrow morning at 9 o’clock my beautiful Jared will go for his CT scan. At 12 O clock we will see the surgeon.
I have stopped thinking and researching Lymphoma. My heart has stopped beating. It is pounding.
Pain Clinic 11.9
Urghhh! Yesterday was a horrible day!
Vic was fine but it was Pain Clinic day…………. I start stressing about the Pain Clinic the day before. Although it is on an appointment only basis, it is also first come first serve……
With the amount of morphine Vic takes, she needs to be assessed on a monthly basis by a pain specialist. Vic was not able to go with yesterday morning so I set off on my own. By now the Pain Team knows me well. Even when Vic goes I am actually able to give them more succinct feedback on Vic’s pain control than she is.
Generally I do not have a problem in getting her script even when I am on my own. I walked in just before 8am and the waiting area was packed! My heart dropped into my shoes. It was going to be a longggggg day…..
Surprise, surprise – no Prof Froehlich! Just a young anesthetist I do not know. It was going to be an even longer and more stressful day than I imagined when I walked in.
Well, what a pleasant surprise when the Sister in Charge called out a number of patients and handed them their repeat scripts. That was a first!!! All of a sudden the queue was much shorter! There was hope….
I was the second “patient” to be consulted. Yeah!!!
The Pain Clinic works on a two file system. The Pink file contains the Team’s observations and notes on previous consults, medical history, medical letters, test results etc. The patient keeps the brown file. It contains the prescriptions.
The new doctor introduced himself and apologized for the professor not being there. He started paging through the pink file. He frowned. He read. He paged back. He frowned more. He shook his head in disbelief and clicked his tongue. I sat there and I thought: “Flippen hell!! He is not going to give me the morphine script and we have no reserve stock. He will want to consult with the Professor first or insist on seeing Vic…We will have to come back.”
Maybe I can ask Danie to help her get dressed and bring her to the Clinic…But she was in so much pain when I left and had vomited violently the previous night from pain.
“Who takes care of Mrs Bruce?” he asked
“I do”
“Do you have help and who is looking after her now?” he asked
“My husband is amazing. He helps and her boys help. I also have a domestic who assists.”
“Are you able to work taking care of Mrs Bruce?” he asked
“I am fortunate. I am able to work from home.” I said
“How are her sons handling her situation?” he asked
To my shame I started tearing up. The Sister got up and handed me a tissue.
“It is very hard for them. I sometimes see the helpless despair in their eyes when they look at her. Her eldest has been in hospital twice in a matter of two weeks for kidney stones and Vic not able to go with him to the hospital. She was too ill… And now the doctors suspect he may have Lymphoma. He is only 15…”
“How is she handling it?” he asked
“Vic is absolutely devastated. She feels so guilty that she is unable to be a “proper” Mom to the boys… She is worried sick!” I said in a weepy voice.
“Are you having any professional counseling?” he asked
“No I replied. We use all our financial resources to pay doctors, hospitals and pharmacies. Counseling cannot and will not keep Vic alive.” I replied.
He started writing the prescription.
“Is she coping with the pain medication?” he asked
“The Jurnista is amazing. It has made a phenomenal difference in her pain management.” I said
“The hospital will not supply you with the Jurnista.” he said
“I know. May I have a private script for it please? I asked
“There is no morphine syrup in stock doctor. Please put the syrup on Mrs Bruce’s private script.” the Sister in Charge said.
He handed me the brown file and an envelope.
“I have written a referral to the Hospital’s Psychology Department. You need to see someone as a family to help you through this.” he said. “There are other palliative care options other than Hospice. I see in Mrs Bruce’s file the Prof is working on it…” he concluded
I did not dignify his remark with an answer. We shook hands. He wished us well and I left to spend another couple of hours waiting for the medication to be dispensed. I fell asleep in my stainless steel chair outside the pharmacy and my neighbor had to wake me when it was my turn.
Today I went to meet Lani’s foster son. I am going to gloss over my visit with baby Izak. He is so cute that I need to dedicate an entire post to him.
On my way home I had a phone call.
“My name is Christa. I have been asked by Prof Froehlich to assess Mrs Bruce for palliative care assistance. Would 9am tomorrow suit you?”
“Absolutely.” I said. “Do you need directions?”
“No, I have a GPS” she said….
It is going to be a longggggg night!!!
September and awareness of pain
As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively. I have argued with physicians and meet with pain specialists at the pain clinic every month. I have bullied hospital nursing staff. I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…
September and awareness of pain.
Tapestries of Hope
What a wonderful caring community I have entered. I occasionally get a personal email from someone, who read my blog, and has a special word of encouragement for us as a family. I truly appreciate it.
I find that I am constantly coming back to my blog and emails so see if there is any new advice or message. I may be developing an emotional dependence upon the support I am getting from the blogging community….
I am re-posting an email that I received today from Alison of Tapestries of Hope. “Tapestries of Hope is a central New Jersey non-profit dedicated to honoring each woman in the community who is grieving the death of her mom or mother figure. Tapestries was created to provide a peer supportive environment for women to express their grief through workshops, support groups, expressive arts, and programs for continued healing.” I was reduced to tears by her loving, compassionate email. I want to share the compassion that we have been shown. I was so concerned about baring my tattered soul to the world that I was hesitant to start the blog…It is the greatest thing I have ever done.
Alison, thank you for your kind words. You how no idea how “bruised” and isolated I felt today, Thank you for showing me that you care and that there is a caring world out there – even if only in cyberspace! Thank you for taking the time to write me a personal email. You are a special lady!
Hi Tersia,
Forgive me for not emailing you right away. I’ve been reading the blog you’re keeping as Vic goes through her illness, and I’ve been touched beyond measure as I read of her struggle, yours, the joy, the roller coaster of emotions. And it took my breath away to listen to the song you dedicated to her “Never Alone”. One of the events we sponsor here at Tapestries of Hope is our yearly pre-Mother’s day gathering, called “Our Moms, Our Memories” and that is the song that one of the daughters sang two years ago.
I worked in hospice for many years, and our current president, Alisa, works at one now, as bereavement coordinator. I don’t know how hospice is in your part of the world, but I’m a strong proponent of it. It makes an impossible time just a little bit more manageable, and I hope your Vic, and you, will make use of it when you decide the time is right. My sister and I called in hospice for my 36 year old brother, Kysa, when he was ill with cancer, and again 6 months later when my mom, Betty Catharine, died of breast cancer. It was my experience with them that led me, ultimately, to work for hospice and then found Tapestries of Hope along with Alisa.
There are no words that I can give you that will make any of this better, but I want you to know that I understand your wishing so desperately for your mom to be here with you now, to listen, to help, to be there for you. My husband Chuck went through a very aggressive cancer last year (thankfully he has a clean bill of health now) but through it I wished for nothing more than to be able to call my mom and know that, even if nothing changed, I would feel better after speaking with her.
If you would like to connect with other daughters who have grieved their moms, I can put you in touch with so many. We have well over 200 daughters who make up Tapestries, both locally in NJ and around the country. We have a facebook page also, and you can find so much support there. Just type “Tapestries of Hope” into your search engine, and you will find us.
Whatever I can do to offer support to you as you find your way through this, please reach out. I’m very approachable and spend so much of my time chatting with daughters and emailing back and forth with them.
Please stay in touch when you can~
Alison,
daughter of Betty Catharine
Founder TOH,Support/Outreach
“How to Die In Oregon”
Mommy I broke my Back!!
Mommy I broke my Back!!
Vic has had an absolutely amazing week. Her pain has been beautifully controlled. We have had severe bouts of vomiting and cramping but compared to a month ago – it was a walk in the park!
The Jurnista is definitely working! I have an appointment with Prof Froehlich on Tuesday, the 14th of August, and she will then give me feedback on Hospice. I was completely prepared to tell her I don’t need Hospice on any level anymore. Vic’s pain is so well under control that I can handle her care with no assistance or problems at all.
My baby sister (she is only 55 years old) Lorraine, spent some time with us over the long weekend in-between umpiring at the South African National Netball Tournament. She was amazed at how well Vic looked. (Remember she last saw Vic when she fell at the end of June). Vic has been amazing. This week she has been far more mobile. She started thinking (arguing) about driving again….. The first time in months!
This morning Vic went to breakfast with her friend Angela. She was so excited.
Two hours later Vic literally shuffled into the house. “Mommy I broke my back!”
My heart stopped.
On a certain level I am angry. I am angry that Vic wasn’t more careful. I am angry that I slipped into a false sense of security! I am angry that the Jurnista is masking the pain so well that Vic is pushing her body’s boundaries.
Conclusion: Vic is still a very sick little girl. The fact that her pain is better controlled does not mean that she is well. If any of us had spent the amount of time vomiting and cramping that she has this week we would be in bed hooked up to an IV and praying for death. This week Vic’s amazing resilience again amazed me. She is strong beyond comprehension!
My heart bleeds for her that her fragile body has once again failed her incredible will to live. It is clear that she is merely holding onto life, as she knows it, with her fingertips……
I will go to the meeting with Prof Froehlich and continue my fight for Hospice to become involved. Vic will never function on any level again. She is confined to bed relying on medication to keep her sane. Maybe she will have a good couple of days here or there but her sentence has not been commuted.
Dummy’s Guide for the Parents of a Terminally ill Child
Dummy’s Guide for the Parents of a Terminally ill Child
- Vic and the boys before she had her blotched back operation
I often read about a child that had been ill for a long time and the parent being in denial. Death is never discussed. I know it may take months or even years for Vic to die. Maybe, with a bit of luck, I will die before she does. But when either one of us dies there will be nothing unspoken. Vic and I talk a lot. We talk about many things. If ever I think of something that I am not certain of, I ask her immediately.
I have fully accepted that Vicky is always walking the tightrope even when she is doing great. It is the nature of the beast and the beast can take you by surprise.
We have spoken about heaven and what a peaceful, healthy place it will be. We often speak about meeting again in heaven and Vic always says she is not scared of dying. Vicky feels terrible about leaving us behind. She worries about leaving us all behind. She worries about how sad we will be. I wish I knew what to say to truly put her mind at peace and to let her “let go”…
It was very difficult to first raise the question of death. It started approximately 8 years ago with a tentative “Sweetie, is all your paperwork in order before you have this surgery?” and progressed to discussing and shopping for 18th birthday gifts, Confirmation bibles and 21st Birthday Keys. It was strangely “pleasant” going shopping with Vic. I knew that her mind was at ease having done the shopping. Maybe she will be around for these milestone events. Maybe not….. But Vic is prepared. She is far more prepared than I am. She has written letters to be read after her death. She has “special events” cards that I will give the boys when the occasion or need arises.
To arrive at the point, where we are, has been hell! No matter what age your child is, when you first find out that your child is terminally ill, your initial instinct is to shelter the child. (Regardless of the child’s age – the child will always remain the child!!) The parent’s first instinct is to leave no stone unturned. You watch the child like a hawk, looking for small signs of improvement or deterioration, looking for symptoms, hoping against all hope that the doctor made a mistake!
I analyze every ache and pain, hoping that the stomach cramps are merely side effects of the medication. I know when Vic is heading for a UTI; I know how her body reacts to different medications. Unfortunately there is no “Dummy’s Guide for the Parents of a Terminally ill Child”.
Professional counselling is available at a terrible cost. By the time your child is diagnosed or rather sentenced to terminal illness, hundreds and hundreds of thousands of rands has been spent on medical bills. Within two months of the new medical year the medical aid is exhausted….. The medication and treatment cannot stop regardless of the claimable amount left on the medical aid limits… I have said it before – morphine or counselling???? No contest! Morphine wins hands down. Now in a civilized world Hospice should enter the picture at this stage….. Unfortunately we live in South Africa and Vic does not have AIDS or cancer. I pray that she will find the peace that I know she does not have.
No-one in the world can live in so much pain for so long!
It has to end sometime.
Vic's Final Journey 