Tag: terminal illness. terminally ill

Tips for dealing with people in pain 17.7.2012


“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”  Leo Buscaglia

I am disgustingly healthy!  I do not get headaches, toe-aches, tummy aches, ear aches or any aches or pains.  Every five years or so I get the flu and am totally unable to deal with the discomfort or pain of flu…I will stay in bed and when I hear Danie walking up the stairs to our room I will actually start groaning.  It is involuntary.  I am a ninny.  My family joke with my non-existant pain threshold.  Yet I see the doctor once a year for an annual check-up as I did last week.

Liver, lungs, kidneys perfect according to my blood tests.  Slightly elevated cholesterol count.  Doctor says I am in near perfect health.  So how do I understand my child’s pain and discomfort?  I don’t!  If you were born blind how could you ever understand or appreciate color?

There is a very brave young lady called Katie Mitchell, who suffers from Marfan’s Syndrome.  http://connectivetissuedisorders.wordpress.com  Katie gives me an insight into pain… She articulates her feelings beautifully.  Katie lives, breathes and understands pain… Katie has become my window into Vic’s painful journey…Katie re-posted a blog on pain and I found it so enlightening.  I will actually print the document and discuss it with the family.

Katie writes in red and my comments are in black:

Tips for dealing with people in pain:

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Vic is always trying to go to breakfast with Angela, lunch with Mrs Cramp and coffee with Tracey.  Vic very seldom is able to stick to a commitment.  It fills her with remorse.  She desperately wants some normality in her life.  Some semblance of a social life.  Pain and ill-health prevent it!

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.  Oh this I truly relate to…Vic sitting in the sun and crashing later, Vic trying to participate in a family barbecue and spending a week in bed to recover… Every action has a painful consequence!  As a family we dread Vic’s brave (but stupid as far as we are concerned) attempts of participating in life.  As a family we become angry, frustrated and scared when Vic tries to “live”!

3.  Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.  I never realized or appreciated this aspect of pain.  I often thought to myself Vic must be doped up, disinterested… As a family we were not aware of this aspect of pain.  Vic at times seems totally disinterested in the boys, the family, in life…

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.  Vic battles with too much movement or noise.  She becomes very irritated.

 5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.  Absolutely!!  If Vic wants something she wants it now! 

 6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.  Sometimes I am too scared to ask.  Some day’s I say “Oh, you are looking so great today” and Vic will reply “Oh good…” and I know that she is thinking “Tell my body!  I am feeling like death”

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.  Tonight Vic could not rub the hand cream into her little hands.  She could not pull a brush through her hair…

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.  I think Vic is past this stage.  Her pain is debilitating relentless and never-ending!

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down).  We are past the visiting stage.

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.  Every small action elicits a “Thank you Mommy”  Reuben actually remarked that in the past Vic took everything that I did for her for granted.  At this stage of her life Vic drives me absolutely mad with all the “Thank-You’s”

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.  Vic’s pain is well-defined but at times she has referred pain.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.  We do not understand pain.  I never have pain.  I cannot imagine not being able to walk, run, work, function, drive, live due to debilitating pain.  I groan from flu-pain…I don’t know how it feels to have a frozen abdomen, fractured vertebrae, migraines from skeletal collapse, chronic and unrelenting tissue pain…. There are times that I think surely it cannot be that bad?  I don’t understand Vic screaming with pain but I KNOW her pain is real!!!

Author Unknown” http://connectivetissuedisorders.wordpress.com/2011/05/20/tips-for-dealing-with-people-in-pain/

 In addition to the above I would like to add some of my own observations…

13.  Pain makes people emotionally over-sensitive.  Vic often misinterprets what we say.  She takes things very personally!  She is almost jealous of the boys and my relationship.  She feels excluded from so many aspects of our lives.  Last week Vic said “You are the fun-Oumie.  I don’t make my boys laugh”… She is very sensitive as to who the boys ask permission to do things or go places…   It is okay because she is scared of losing everything that is precious and dear to her.

14.  Pain makes people selfish.  This is a harsh statement.  When your body is engulfed in pain it must be very difficult to see reason and to wait.  It must be difficult not to lash out at the world.  To not stop and think of the effect that your illness has on your family and friends.

15.  Chronic pain and depression are closely linked. Chronic pain almost always leads to depression:  Why?  Just imagine a life consisting of dreadful, mind-blowing, unrelenting pain?  Imagine not having anything to look forward to…  We try to set little goals for Vic.

16.  Fatigue is a definite factor.

23.2.2012

Whether it is the pain medication or the emotional strain of coping with the pain, Vic is chronically and permanently tired.   We leave her to sleep.  We are far happier seeing her in bed than seeing her battle to walk, sit or participate…It stresses us that she gets up when she is so tired.  Vic falls asleep in a chair, the bath, the car, on her feet… We are at loggerheads with Vic in this regard… We want what is best for her…

17.  Addiction:-  “Patients often fear addiction. Patients with chronic pain do not and cannot get addicted to morphine. This is proved clinically by seeing patients whose pain is abolished (with a nerve block, for example) when even high doses of morphine used for several months can be stopped immediately with no withdrawal effects. Patients who are terminally ill still often fear that they may become addicted to morphine. They and their families can be reassured. This cannot happen when morphine is correctly used to control their pain. http://www.hospiceworld.org/book/morphine.htm“

The amount of medication that Vic takes is a source of great embarrassment to her.  Her biggest fear is that people will think of her as a “drug addict”.  This often prevents her from taking adequate medication. Do not even jokingly call someone who is chronically ill a drug addict…You have no idea what you are talking about!   Quite frankly I don’t care whether Vic is an addict or not…as long as she has some quality of breathing or life as she now knows it.

I wish I could research exotic vacation spots rather than “Tip’s for dealing with people with pain”  But this is part of our journey…

I am dying 9.7.2012


I am dying 9.7.2012.

Chronic Illness versus Terminal Illness


Chronic Illness versus Terminal Illness.

Chronic Illness versus Terminal Illness


Vic’s other parents visiting…

What a lovely surprise.  Gillian and Len popped around for a cup of tea!  What makes it unusual is the fact that they live in White River and have just been to the Sani Pass.  Vic was so happy.  She cried tears of happiness when she saw Len.  For a precious hour today we were able to laugh and visit with dear friends.

Len is the second “oldest” living male role figure in Vic’s life.  My brother Johan is the “oldest” living male role model.  Gill and Len have been my dearest friends for the past 34 years.  Is oldest the correct word?  Len is older than Johan and yet Johan is the “oldest” male…So “oldest” in this case means the “longest around”…

Gill was so amazed.  When she last saw Vic she was convinced that she would not see Vic alive again… In the meantime Vic has had her fall and technically speaking should be so much worse off.  But Vic has once again bounced back.

I decided that maybe I should check the difference between critical, chronic and terminal illness.  Maybe Vic is just chronically ill and the doctors got the terminology wrong.

“A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects.[1] The term chronic is usually applied when the course of the disease lasts for more than three months.[1] Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and HIV/AIDS”.  From Wikipedia

Critical illnesses are serious illnesses that put the afflicted in danger of possibly dying. The illnesses that are considered critical tend to vary. Typically the big four critical illnesses that are covered would be heart attack, cancer, stroke and coronary artery by-pass surgery.

“Terminal illness is a medical term popularized in the 20th century to describe a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease which will eventually end the life of the sufferer”.  From Wikipedia

So according to Wikipedia Vic squarely falls into the terminal illness category.

The experience of death and dying has been transformed over time by significant advances in medical care and technologies, from a short-term event into one that usually involves a prolonged time of slow decline from chronic degenerative conditions.

Let’s look at Vic.  Vic was diagnosed with Osteogenesis Imperfecta as the age of 18 months.  By her 3rd birthday Vic had had 41 fractures.  The prognosis: – Vic would not live to be older than 12

Vic survived her 12th birthday and got married at the age of 21.  Vic fell pregnant 6 weeks after the wedding.  The prognosis:  Vic would not survive the birth of her baby.

Vic survived the birth of Jared.  When he was 7 months old Vic needed surgery to both her wrists.  She had fractured both her wrists and torn the ligaments picking up her baby.  When Jared was 13 months old Vic fell pregnant for the second time.  The prognosis:  Vic and the baby would not survive the pregnancy.  Vic was on bed rest when she was 3 months into her 2nd pregnancy.

It was a difficult pregnancy.  Vic survived and so did Jon-Daniel.

The pregnancies took a severe toll on her health.

At the age of 26 Vic had a hysterectomy.  Age 27 Vic had her blotched pro-disc surgery.  Life threatening sepsis resulted in 80, mainly abdominal surgeries. Now in 2012 there is no further treatment or surgeries available.  Over the past 10 years Vic has bounced between life and death.  She has certainly had good times as well as bad times over the past 10 years.  She has loved and hated, laughed and cried.  She has had good days and real bad days.  She has raised two beautiful boys to be compassionate, caring, responsible young men.  Boys that have brought so much joy to their mother’s life and that make us all so proud.  Young men that we know will honor their mother and their upbringing for the rest of their lives.

The difference however is that this year I believe Vic went from chronic illness to terminal illness.  This year the medical profession has given up hope.  Brendon has categorically stated he will perform no further gastrointestinal operations on Vic, The orthopedic surgeon refuses to pin her arm and the physician cancels blood tests…  On Friday we went back to the orthopod as her hand is so swollen and the pain is getting worse in the arm.  The X-rays showed that the fracture has been aggravated.  The displacement worse and yet he cannot do anything.  The sepsis from the spine and abdomen will spread to the arm.

Everyone has given up on Vic.

It is so soul destroying that no-one is prepared to try anymore.  This year every darn doctor has refused me.  I have always been able to bully them into trying one more time…just one more time.  I cannot take Vic to another gastroenterologist because someone who does not know the condition of her abdomen will certainly cause her death.

Tonight, after Vic’s 23:00 medication she just sobbed and sobbed.  I know her arm is really hurting.  She asked me to lay with her and I held her until her sobs subsided and her breathing became deep and peaceful.  She kept murmuring “I am sorry Mommy…”

Sorry for what?  Vic is sorry that she has “let me down”.  That she has failed at surviving and truly bouncing back. Being able to maintain a “life” and assuming responsibility for her own household and family.

Gill gently suggested that I blog happy moments…  So when I sat down tonight I tried to think of happy moments to share but I could not!  Gill says my blog is sad and I suppose it is.  The blog however mirrors my deepest feelings.

I am sad for my beautiful little girl.  I am sad seeing Vic deteriorate and her suffering increase.  I am sad for my beautiful grandsons and the despair in their eyes when they look at their Mom…

 

 

Who is taking care of the caregiver? 5.7.2012


When my Dad was ill with Alzheimer’s, I subscribed to two forums/support groups.  I suppose I am not good at letting go because I have not left the groups despite the fact that my dad lost his fight against AD on the 20th of May 2011.  On the other hand Alzheimer’s is a terminal illness and there is a lot of synergy between my Dad and Vicky’s journeys.  I don’t think I would have gotten through my Dad’s journey if it had not been for the Caring.com group.  http://www.caring.com/home-care.  The practical advice of caring for an AD patient was of immeasurable help.  The members support helped us as a family in understanding the destruction of Alzheimer’s and recognizing the stages of the disease.

So when I received the latest post: “Who is Taking Care of the Caregiver While the Caregiver is Taking Care?” written By Carol Blackwell Alzheimer’s Reading Room, I was delighted.  I am in such a depression and totally at a lost as how to get out of it. http://www.alzheimersreadingroom.com/2010/05/whos-taking-care-of-caregiver-while.html

I just knew there would be solid, practical advice in the article.

Carol Blackwell’s opening question is: “Are you taking care of yourself? You can’t be there for them if you aren’t there for ‘you.’ Your mood and stress affects their mood. It surely isn’t easy and life is sometimes stressful and difficult. Here are some things that helped me—you can decide if they will work for you.”

Exercise! 

Carol Blackwell wrote “I know you may be thinking you have no time to exercise because you are so busy taking care of your loved one and too tired at the end of the day. I say, that is exactly why we need to exercise.”

Right on Carol.  I don’t have time.  My days are very long and I don’t get a lot of off-time.  Last year Danie and I went for a walk every night.  Sometimes the boys joined us.  It was great and I miss it.  But I have decided that I will start exercising today!

Volunteer for service to others.
Carol Blackwell wrote:  “I imagine you are now thinking I am really weird. How can we find time to work for others when we are struggling ourselves? For me, initially, I found it was easy to sit in the house and feel sorry for us. We didn’t sign up for this disease invading our lives, we had just had gotten to the point where we could be free from work constraints, etc. Etc. Unfortunately, sitting in the house feeling sorry for us didn’t help much. It wasn’t fun and served no purpose except to make me crabby and Bob depressed. No one wants to be around crabby people.”

Carol you are weird.  I don’t have time to sit and do anything.  I have a career, a household to run, two grandsons to fetch and carry, Vic to take care of…  For many years I was very involved in working with the less fortunate.  I however believe that in the Chinese Proverb “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.”  Done and dusted.  One day I would love to do some community work again but for the time being I have to concentrate on my family and their survival.  Selfish – maybe…  For now that is the way it has to be.

Do things you enjoy—you deserve it. 
Carol Blackburn wrote:  “What do you find fun and what gives you pleasure? It is different for all of us. I enjoy Wii games—I love the Wii Fitness Plus activities. They are fun. “

Tick.  I love my Children and grandchildren.  I love the patter of little children’s feet in the passages of our home, the sound of children’s laughter, and their little arms around my neck.  I desperately miss my UK grandchildren.  I am permanently miserable when I think of them.  I miss them with every fiber of my body.  Sometimes I am so weepy that I cannot even Skype with them.

I am so happy that Lanie and Tom have moved to Johannesburg.  Now we see them and the girls on a regular basis.  We spend a lot of quality time together.

Yuri, our youngest grandson asks his Mom whether he can’t come visit his Oumie every day before school…

Liza (the youngest daughter) and her husband have finished sailing around the world.  I look forward to flying down to Cape Town to visit with them.  As soon as Vic is able to cope without me we will fly off…

Vic finds the noise a little distressing.  But the little ones know Aunty Vic is ill and are so good!

Carol is right.   I enjoy having the grandchildren around and I deserve to have my grandchildren around me.  Grandchildren are the joy of my life!  And I love playing Cityville on Facebook.

Consider meditation/yoga.
Carol wrote:  “Research has found that taking time to meditate and to engage in yoga is beneficial in reducing stress.”

Maybe one day when I have time… and the energy.

Don’t be a martyr.
Carol wrote:  “Martyrs may be noble, but they really aren’t much fun. You can’t do it all and you shouldn’t have to. Find help if you need it.  Are you in a support group? Check the Alzheimer’s Association link to fine one near you. Join it—it will help to find others who are going through what you are. “

“Is there someone who can come in for a few hours and let you take a break? Someone from church?  A friend? There are people who would love to help us, but we don’t ask. Ask. You owe it to yourself and your loved ones!”

My dearest friend, Gillian, wrote:”I would like to half your work and cares.  Put you in a bed for sleep therapy.  But I know you won’t trust a soul with your family”.  Few people know me as well as Gillian does.  I cannot leave Vic.  There is that beautiful John Lennon song “He ain’t heavy, he’s my brother”.  Vic ain’t heavy she is my baby.

I am trying to get Hospice involved.  Danie does help a lot and so do the boys.  Esther bathed Vic on Tuesday whilst I was at a meeting.  The church and I deserted one another some time back.  I don’t have many friends.

People have their own lives.  We live in a world where we don’t have time for other people’s problems.

Only a mother who has watched her child suffer will understand the despair of another mother.  Will understand how difficult it is to face every day, the depth of despair when you cradle your vomiting child in your arms….to say “Just one more hour baby” when she begs you for pain medication…

Smile or laugh each day.
Carol Blackwell wrote:  

We do.  Today I watched Rango with the boys.  It was so funny.

Cut yourself some slack.
The wise Carol Blackwell wrote:  “Everyone has ‘blue’ days. It’s OK to have a ‘pity party’ once in a while. It just doesn’t help to let those days happen too frequently. Also, don’t beat yourself up. We can’t always be calm, patient, understanding and saint-like. We are all just doing the best we can. Wallowing in guilt for occasional impatience won’t help either.”

This week I am truly wallowing in self-pity.  I have been guilty of impatience, I have lacked understanding.  I am petrified that Vic’s pain and suffering will continue for many more years.  It is strange that Vic is having a better week than she has had in three months.  As Esther said, her eyes are bright and she has mobilised pretty well.  She is less tired… What if this vicious cycle of pain and suffering continues?

Don’t lose hope.
Carol Blackwell wrote:  “There IS a cure for this awful disease. Out there—somewhere, someone is working on it. We just don’t know it yet. It will come. Keep the faith, baby!”

Just as there is no cure for Alzheimer’s at this stage there is no cure for Osteogenesis Imperfecta.  But there may just be a cure for the adhesions that I believe will ultimately cause a fatal obstruction.  Today I found a website where a doctor who claims great success with the treatment of frozen abdomens.  On the surface it seems very positive.  http://www.prweb.com/releases/2012/5/prweb9432209.htm

Anyone who has ever wrestled with God can understand the bargaining prayer. I have bargained with God all of Vic’s life.  If there is a cure I will do this or that…. For MANY years I have put the Church and God ahead of Vic and my family and yet all my love and commitment has resulted in further pain and suffering.  I know this paragraph will result in many emails or comments but I ask of you “Do not judge me if you have not walked ten miles in my moccasins!”

So for today and maybe the rest of the week I will hold onto my new hope.  “Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances.”  Until I receive a reply to my enquiries…

To all my friends, cyber friends and family thank you for your support and love!  Yesterday I considered stopping the blog as it has opened up fears that I have suppressed for so many years. I however think it is something I must do – for myself.

“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on… “


“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.“

Muriel posted this message on Vic’s Facebook page.  Today it echo’s my feelings.  I am so tired of living.  I am so tired of this miserable existence that we call life.  Surely, there must be more to life than breathing!

Today was a day out of hell.  I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating.  I got up with great difficulty, showered, and made Kreemy Meal for my family.  Both Jared and Vic need soft foods.  I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.

Within 5 minutes, I was stuck in terrible traffic.  Five lanes reduced to two…

Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!!  I phoned Vic to check on her only to be told that she had gotten ill all over herself!  She had to bath and I was not home to help her!  I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again.  Once she felt better, she would have to ask Primrose, the helper, to help her bathe.  I could not leave the test site.

Danie phoned to tell me – “No Morphine Syrup – come back next week”.  Some good news was that Esther came to visit and helped Vic bath.  That girl is an absolute saint!  Esther also took Jon-Daniel to the movies.  I am so grateful that he could get out of the house of gloom and illness.

Then the system failed…  The shipment would be delayed by at least another 5 weeks!

Another traffic jam to my next meeting…

An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic!  A 20-minute trip became a 1.5-hour trip!  Arghhhhhh

At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00.  In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him.  I put it through the strainer and rushed off to his room with a tray and his pureed food.  I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor!  I just burst into tears.

I cannot believe that something that I would normally laugh off as an accident set me off.  Poor Jared had to eat soup for dinner.  He is so tired of soup!

Well today, I am fed-up with life.  I am tired to the core of my soul.  I do not want to hear that I am doing a great job or that I am strong.  I do not want to hear anything!  All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.

Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party?  I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill.  I do know I cannot afford to cry.  It distresses everyone around me.

I need a stronger anti-depressant.

I am going to bed.  I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives.  Life is already so hard for them.  Tomorrow is another day and we will face whatever life throws at us!

“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.“

A lifetime ago…

Vic regrets not going to Italy 2.7.2012


Nothing in the world can ever prepare a parent for that moment  when the death sentence is pronounced over your beloved child.   I remember it as if it was yesterday.

Thank God Vic was in ICU and heavily sedated at the time.  Brendan told us in the passage of the Donald Gordon.  Colin and I went into shock.  We did not ask a single question.  We just looked at him … Mute for that dreadful, heart wrenching, moment.

Later that day Colin and I went to Brendan’s consulting rooms and spoke with him.  I had so many questions and he had so few answers.  He basically said that with the Osteogenesis Imperfecta Vic’s tissue had been affected very badly.  The intestines were very poor and she had very bad endometriosis and abdominal adhesion’s.  The adhesions were the biggest threat…it would almost certainly cause blockages of the gastrointestinal or urinary tracts.  There would come a stage when they could no longer operate or her little body could not take the strain anymore…

Strange Vic knew…when she eventually came round she knew that life as she knew it was over.

When I broke the news to her she was calm.  See, all her life she knew that eventually this day would come.

The doctor recommended that we get in touch with Hospice.  We did.  We had a family meeting.  Colin parents, Danie and I and Vic and Colin.  Colin went through an anger phase.  He felt let down… he thought they would grow old together.  They had two little boys aged 3 and 5…  So many challenges!  So many emotions.  So many medical bills!  In 2002 Vic’s medical costs were R3.2m.  ICU Pharmacy accounts ran into the hundreds of thousands of rands!

With terminal illness come HUGE medical bills.  As long as there is money the doctors will operate and treat, hospitals will admit and treat…   Colin and Vic eventually lost their home due to medical bills and Danie and I started taking additional bonds against our property.

When faced with the news that a family member has been diagnosed with a terminal illness, many people worry about what they should say and do. They want to help, but often don’t because they are afraid they will say or do something that will further upset the loved one.

Terminally ill persons have the same physical, emotional, and spiritual needs as everyone else. What they need most of all is to be cared about, not just cared for.

Someone said that they do not see Vic anymore as they had already said their goodbyes…they could not handle the emotional trauma of going through the goodbyes time and time again.  In their lives Vic no longer lives….

When the time comes I wish I could have a “by invite only” funeral for Vic.  If you cannot care about Vic whilst she is alive why on earth would you want to attend her funeral?  It has been 10 years and Image

Physical Care is certainly the most difficult part of the dying person’s journey as far as I am concerned.  The control of acute and chronic pain is the biggest challenge that we face.  Medication every four hours is a challenge.  The days are fine but the nights – well that’s a different matter.  It is easier to stay awake until 03:00 and then go to sleep.  Danie or the boys are up by 07:00 so I sleep in.  Getting enough pain medication prescribed is the BIGGEST challenge of all.  Vic’s medical is exhausted within the first two months of the year and thereafter is a nightmare!

The other issues that we have to contend with is constipation, nausea and weakness.   Often Vic is too weak to get out of bed on her own and needs help to get to the bathroom and back.  Showering and shaving her legs is a challenge.  Almost the biggest challenge is Vic’s hair!  Vic has a thick bunch of hair and she will not wash and towel dry it!  Her hair must be blow dried!

Vic went through many stages –  anger, sadness, anxiety, and fear.  It is strange that at first we all go into denial.  Even now I still do.  Vic said earlier this week:  ” Mommy, I am so happy I will be around for Jared’s confirmation.  I know I won’t be at Jon-Daniel’s confirmation”  I immediately retaliated and said “Of course you will be baby.  You just have to keep fighting”   Why did I feel compelled to make an empty promise?

Vic’s emotions are real.  Touch is comforting to her.  She loves being hugged, touched, kissed.  She appreciates the truth.

If it had not been for Vic’s positive attitude towards life and determination to bring up her boys herself, she would have died many years ago.

Vic is now tired and ready to die.

Vic regrets not going to Italy.  She desperately wants to go to Chaka’s Rock one more time.  She wants to see her boys grow up.  She wants to make a speech at their 21st birthdays!

As a family, there is nothing unsaid.  We love Vic and she knows it.  She will continue to live even after she stopped breathing.  We will honor her wishes for the boys and keep her memory alive.  Vic may stop breathing one day but she will always live in our hearts.

Vic’s fears 2.7.2012


Vic’s fears 2.7.2012.

A vicious cycle of nerves


A vicious cycle of nerves.

A vicious cycle of nerves


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. WillVic Accompanying Jared to theater. 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!

Hospice


Hospice.

37 years on death row 19.6.2012


37 years on death row 19.6.2012.

37 years on death row 19.6.2012


Today was a day out of hell for Vicky.  She is deadly pale – she actually has a ghost like appearance.  She was so ill that she was unable to take pain medication and now her pain is out of control.

If I am having a hard time with this how must this poor child feel?  HOW CAN SHE CARRY ON???

Jared has withdrawn completely!   Rene, Jared’s councillor managed to speak to Jon-Daniel today.   He is in total denial!  He said “My Mom is a miracle.  She was not supposed to live past the age of 12 The doctors said she would die when she fell pregnant with my brother and me and she is still alive.  Lots of times they said she would die…She will get better again”

At first I was filled with disbelief and then I realized with a shock that Jon-Daniel is right!  A couple of weeks ago I bumped into an ex-business partner.  When he inquired after Vic’s health I said that she was desperately ill and that I thought that the end was near.  Frik laughed and said “that is what you said 15 years ago when she was pregnant with her eldest son…”

Reading some of the pre-blog stuff that I wrote and when I look in my Bible there are markings “Vic ICU“, “Vic critical”, etc etc etc.

Vic has been on death row all her life.  I know we start dying the day we are born but for most of our lives we are oblivious to the fact.  At funerals we may think of our own mortality but for the rest of it we think we are invincible.  Jon-Daniel thinks his Mom is invincible.

A colleague asked me earlier today what he should pray for when he prays for Vic.  I replied “Mercy”.  When I got home tonight and I saw this tiny, pitiful little bundle doubled over from the pain,  I panicked and thought to myself “What if Jon-Daniel is right and she gets better again?”

If there is a God He will release my poor child from this dreadful life!  It is an inhuman existence that not even an animal deserves.  If Vic had been an animal she would have been put out of her misery a long time ago!!  God does not have to heal her.  He does not even have to take all her pain away.  If she could just have SOME quality of life…some pain free time with her boys… Please God hear my prayer!

Just a cocktail that will send me to heaven 19.6.2012


It was a rough weekend for Vic.  Although we had a house full of loving visitors she was in so much agony.

Vic is experiencing severe intestinal cramping.  Again her abdomen is very distended and quite hard to the touch.  She is also nauseous.  I know these are all signs of an obstruction but I know it isn’t an obstruction.  Maybe a partial obstruction at worse.

Vic is on a strict pain control regime.  Every four hours she has pain medication in one or other form.   She has to eat to be able to take the medication as she already has a vicious ulcer.  I asked her what she felt like eating for lunch and she replied “Just a cocktail that will send me to heaven”.  This is not the first time that Vic has said this…

Conceding defeat… Wanting to die…

Vic has also gone through a mourning and grieving process.  Every bit of independence that she has ever known is lost to her.  Most things that Vic has ever loved doing, eating, drinking is a long-gone memory.  Things that she took for granted are now an event.  In her state of dependence Vic has become a soft, gentle sick person whose life consists of saying “thank you” and ” Mommy, I am not feeling well at all”  Even as a child Vic would listen to the news every morning when she woke up.  Now she is no longer even aware of what day of the week it is.

Vic loved being a Mommy.  She loved caring for her boys.  She always tried to tuck them into bed at night.  My Dad always said that if Vic had one breath of air she would organize a party…

I keep asking the question “when will it end?”  It is so difficult for Vic to die that I should maybe be asking “How is she going to cope with this level of quality of life for many more months or even years?”  Maybe the question should be “How will she die?”  Will she develop pneumonia from immobility of will she develop a fully fledged obstruction?  Maybe her brave heart will give up the battle?   If there is a God of Mercy Vic will go to sleep and not wake up.

I know that whilst there is one breath of air left in her little longs we will care for her and fight for her to continue breathing.  Vic is long past the stage of living.  She merely breathes.

Jared and Jon-Daniel 12.10.2011