Category: Palliative Care

Cannabis and Pain Control 14.8.2012


http://citydesk.freedomblogging.com/files/2011/04/bud.jpg

Today was a terrible day.  The pain Clinic was crazy!  I have never seen so many people waiting to see the Professor.

When you are sitting in a queue for hours with people you meet every 28 days, you get to know the fellow patients.  But today there were two new faces.  An attractive young woman and her tired looking mother.  They appeared to not be very cultured or refined people.  The young woman was the sister of a patient who, like Vic, is too ill to come to the Pain Clinic.  His sister (S) and mother (M) are his proxy’s.

S became very agitated because she was told – “no appointment,  no consultation, no prescription”.  She actually used some choice language!  She kept saying “It is not for me.  I actually don’t care….”

She however bullied the nurse into agreeing to allow the unscheduled appointment.  But it was a long wait and S, I suspect, is a little ADD.  She was babbling about her brother and his pain and the sacrifices that the family had made after the brother’s motorbike accident.  At one stage of the monologue she said “Sometimes I just think I must give him some poison….”

Holy Moses!! It flashed through my mind “What type of person is this?”….

I was intrigued by the personality so I started chatting to her.  All it took was one or two questions and a flood of emotions and words poured out of them.  Sitting there I realized that I blog and that is what she was doing… S was blogging…..verbally.

She started telling their sad story.  Brother had been involved in a motorbike accident and spent weeks in ICU, ventilated and suffering some brain damage, severe nerve damage and lots of fractures.  He spent many months in hospital and gangrene developed in his leg.  His leg was amputated but the gangrene spread and this lead to 3 further amputations!  The mother said if she had known how he was going to suffer she would have prayed for him to die.

A small percentage of amputees suffer from phantom pain.  “Although the limb is no longer there, the nerve endings at the site of the amputation continue to send pain signals to the brain that make the brain think the limb is still there. Sometimes, the brain memory of pain is retained and is interpreted as pain regardless of signals from injured nerves.” http://www.webmd.com/pain-management/guide/phantom-limb-pain.  Brother apparently squarely falls into this category.

Sister loudly proclaimed, for the world to hear, that she sometimes considers giving her brother  enough morphine to end his misery.  She believes that he is hanging onto life until his insurance claim pays out so he has something to leave his children…

The mother is taking care of her son.  It is obvious that her life has come to an end.  I see the despair in her eyes when she says “He doesn’t sleep.  Yesterday he threw his crutch at me…..”

Sister then whispers, in a conspiratorial manner, “We buy him lots of extra medication”

I asked them whether they had ever considered giving him cannabis.  “Oh yes” they said.  “We made him tea and he hated it!”

“It is better if he smokes it” I said

I looked around and saw shock and surprise register on everyone’s faces.  I could see them think “How can this (sweet) middle aged, conservative, Afrikaans speaking lady even know about cannabis?”

Well, I do know about cannabis.  I have researched every single aspect and possible pain management method and product and my research includes the effect of cannabis on pain relief.

  • Marijuana helped reduce pain in people suffering spinal cord injury and other conditions. In this study, 38 patients smoked either high-dose or low-dose marijuana; 32 finished all three sessions. Both doses reduced neuropathic pain from different causes. Results appear in the Journal of Pain.
  • Medium doses of marijuana can reduce pain perception, another study found. Fifteen healthy volunteers smoked a low, medium, or high dose of marijuana to see if it could counteract the pain produced by an injection of capsaicin, the ”hot” ingredient in chili peppers. The higher the dose, the greater the pain relief. The study was published in Anesthesiology. http://www.webmd.com/pain-management/news/20100218/medical-marijuana-has-merit-research-shows

A couple of years ago I bought some cannabis and put it in brownies for Vic to eat.  She hated it.  I gave her some to smoke.  She hated the effect that it had on her.  I know it is illegal.  Personally I have never smoked or eaten the stuff so I do not know what effect it has on people.  I have read, in 100’s of publications that it reduces the pain perception and can stop the devastation of Alzheimer’s.

I will stop at absolutely nothing to relieve my childs pain.

I then had a light-bulb moment – I realized that the mother and daughter were no different to me.  They know the heart wrenching despair of caring for a loved one who has indescribable pain.  They too pray for their loved one to find peace and release in death.  They will also do anything to relieve the pain of their loved one.

I just have an extra layer of veneer

Skin to Bone 13.8.2012


This morning, when I checked the BBM status’ of my loved ones,  Jared had the lyrics to Linkin Park‘s “Skin to Bone” as his status.  I did not realize that it was a song’s lyrics and wondered about the weird status.  Normally his status says something like “I love my beautiful Jelly Tot” or “Kirsten, my one and only”

After school, while we were waiting for Jon-Daniel to finish cricket practice, he asked me whether I had heard the song, “Skin to Bone”, before.  Obviously I hadn’t but even if I had,  I doubt if I would have been able to distinguish the words from the loud musical arrangement….I am not the greatest Linkin Park fan in the world!

He spoke about the lyrics and I asked him whether the song reminded him of his Mom.  He said “I suppose so.  When I first heard the words I thought of Mom”

Back home I downloaded the lyrics.

Linkin Park — Skin To Bone
Skin to bone, steel to rust
Ash to ashes dust to dust
Let tomorrow have it’s way
With the promises we made
Skin to Bone, steel to rust.
 
Ash to ashes, dust to dust
Your deception, my disgust
When your name is finally drawn,
I’ll be happy that you’re gone
Ash to ashes, dust to dust.
 
Chorus:
(Aaah) Ash to ashes, dust to dust
(Aaah) Skin to bone and steel to rust
 
Right to left, left to right
Night to day and day to night
As the starlight fades to grey,
I’ll be marching far away
Right to left and left to right
 
Chorus:
(Aaah) Ash to ashes, dust to dust
(Aaah) Skin to bone and steel to rust
 
Let tomorrow have it’s way
With the promises betrayed
Skin to bone and steel to rust (x3)
Lyricsfreak.com © 2009

 “Skin to bone“, represents her frail body to him.  “Steel to steel” her steely hold on life!  Her refusal to give up.  “Ashes to ash, dust to dust”….. the inevitable

 “The promises we made” I would imagine the promise that he envisages is the unspoken promise that a parent makes at the conception of the child….. to love and hold the child – until death do them part…  The promise is not supposed to end in his early teens.

“Your deception, my disgust…..”  relates to his feelings of betrayal.  In a way he perceives his Mom’s ill health as a betrayal.  His Mom is not supposed to be this ill and suffer the way she does.  Vic was supposed to be a healthy Mom.  Their lives were supposed to be “normal.”  “My disgust” …. the despair of his life…..Anger for his mother’s suffering!  Disgust with the medical system failing her.  Anger for the OI gene.  He is unable to understand all the “why’s”.

 “When your name is finally drawn,
I’ll be happy that you’re gone
Ash to ashes, dust to dust.”

 Jared absolutely adores his mother.  He often says “Oumie, I don’t want Mommy to die.” I have however seen the sheer helplessness in his eyes when he sees her suffering the way she does.  I know that Jared too longs for his mother to be at peace, without pain – Her spirit freed from her frail, pain wretched body.  So my precious grandson joins the song and broken hearted sings along with Linkin Park

 “I’ll be happy that you’re gone.  Ash to ashes, dust to dust….”

Mommy I broke my Back!!


Vic as a young Mommy!

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.

Woman’s Day 9.8.2012


The next generation of Strong Women!!

Women’s Day is celebrated internationally in March.  In South Africa we celebrate Woman’s Day on the 9Th of August.  This day com­mem­or­ates the 9 August 1956 when 20000 women of all races and ages par­ti­cip­at­ed in a national march peti­tioning the then National Party Government against pass laws … (“Pass laws” were legis­la­tion that required African per­sons to carry a doc­u­ment on them to ‘prove’ that they were allowed to enter a ‘white area’ dur­ing the Apartheid regime).

Organized by the Federation of South African Women, the March was led by four brave women; Helen Joseph, Rahima Moosa, Sophie Williams and Lilian Ngoyi. The lead­ers delivered peti­tions to Prime Minister JG Strijdom‘s office within the Union Buildings in Pretoria.

The march was a resound­ing suc­cess and South Africa recog­nised the bravery of these women who risked arrest, deten­tion and ban­ning by declar­ing 9 August National Women’s Day

During the March the women sang Nkosi Sikelel’ iAfrika, which became the joint national anthem of South Africa along with Die Stem van Suid Africa, in 1994.  An interesting fact is that ‘Nkosi Sikelel’ iAfrika was composed as a hymn in 1897 a Missionary teacher in Johannesburg.  Five countries, Zambia, Tanzania, Namibia, Zimbabwe and South Africa adopted ‘Nkosi Sikelel’ iAfrika as their national anthem.  Zimbabwe and Namibia have since adopted new national anthems.

‘Nkosi Sikelel’ iAfrika

 
Lord, bless Africa
May her spirit rise high up
Hear thou our prayers
Lord bless us.
Lord, bless Africa
Banish wars and strife
Lord, bless our nation
Of South Africa.

I was surfing “Strong Women” and found some amazing quotes which I would like to share with you tonight.   Interesting,

The next generation of Power Houses!

when I was surfing “Women + Abuse” many, many sites with “50 Shades of Grey” came up….. I am going to have to read the book to find out why “Shades of Grey” is tagged with “women + abuse”…..

“In politics, if you want anything said, ask a man. If you want anything done, ask a woman.” Margaret Thatcher

“Above all, be the heroine of your life, not the victim.” ― Nora Ephron

“A girl should be two things: classy and fabulous.” ― Coco Chanel

“After all, Ginger Rogers did everything that Fred Astaire did. She just did it backwards and in high heels.” ― Ann Richards

“Yes, we praise women over 40 for a multitude of reasons. Unfortunately, it’s not reciprocal. For every stunning, smart, well-coiffed, hot woman over 40, there is a bald, paunchy relic in yellow pants making a fool of himself with some 22-year old waitress. Ladies, I apologize. For all those men who say, “Why buy the cow when you can get the milk for free?”, here’s an update for you. Nowadays 80%of women are against marriage. Why? Because women realize it’s not worth buying an entire pig just to get a little sausage!” ― Andy Rooney

“Perhaps if we saw what was ahead of us, and glimpsed the follies, and misfortunes that would befall us later on, we would all stay in our mother’s wombs, and then there would be nobody in the world but a great number of very fat, very irritated women.” ― Lemony Snicket

“The greater your capacity to love, the greater your capacity to feel the pain.” ~ Jennifer Aniston

“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” ~ Mother Teresa

“Pick the day. Enjoy it – to the hilt. The day as it comes. People as they come… The past, I think, has helped me appreciate the present – and I don’t want to spoil any of it by fretting about the future.” ~ Audrey Hepburn

“When women are depressed, they eat or go shopping. Men invade another country. It’s a whole different way of thinking.” ~ Elayne Boosler

So, tonight I salute all the strong (and witty) women of the world.  I salute the mothers of nations, leaders, sisters and friends.  I salute my daughters.  I salute Vic for the life she has lived.  In the words of― D.H. Lawrence, Lady Chatterley’s Lover  “A woman has to live her life, or live to repent not having lived it.”   Vic has not wasted a single breath!

But, in conclusion, the best quote of the day:  “I, with a deeper instinct, choose a man who compels my strength, who makes enormous demands on me, who does not doubt my courage or my toughness, who does not believe me naive or innocent, who has the courage to treat me like a woman.” ~ Anais Nin, French born American author of short stories.

We all deserve husbands/partners that respect our strength!  I salute my beautiful husband who is truly “the wind beneath my wings”.   Dankie my skat!  Jy is die beste!!

Dummy’s Guide for the Parents of a Terminally ill Child


Danie and I with a happy and carefree Vic at Mabalingwe!
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.

Rest in Peace dear Friend 7.8.2012


Today we buried a very dear friend.  As his coffin was lowered into the grave, gentle snowflakes fell.  A light layer of pristine white forming on the dark, cold soil…..

One does not leave a funeral in the same way that you have come. One cannot help but have death on one’s mind.  One cannot help but be aware that such is the end of all life. One may look at oneself and have a new awareness that one’s body will not last forever. These thoughts are ones that humans must face and find a way to deal with. Some believe that the death is only the beginning of the next great mystery and the soul is eternal. Others take a practical view that death is all there is. Everyone leaves a funeral with thoughts of life and its fragility on their mind.

Today we bid farewell to a dear friend, a brother in every way but blood.   We know that friends like Dries come so infrequently that we want to cling to them and not let them leave.  We want to beg them to stay, but love’s power gives us the strength and the courage to let go. To let them leave when it is time to say goodbye and give them the wings they deserve. To let them fly into the boundless sky…… where the gentle snowflakes reminded us of them as it brushes against us

My regrets are many.  If only I had gone to the hospital to visit when I heard about Dries’ heart surgery……  If only I had gone to visit with Danie when he popped around after Dries was discharged from hospital……..  If only I had truly made Dries realize the value our friendship.  Regrets will not bring him back. I have become so self-centred in my journey with Vic that I have closed myself off from the world.  I have excluded friends and acquaintances and almost jealously guarded my pain.

I bid you adieu, my dear friend. Your kindness, your generosity and gentle spirit will live on through everyone whose path you crossed.   It is with love and the faith that we shared that I will move forward from here.  I will never forget you.

Rest in peace my dearest friend!

Though I do mourn for you my friend
And though I may cry,
And though you are leaving me
I do not say goodbye.
For goodbyes mean forever
Yet here you still remain.
Because, forever you will live
Here in my memories,
And forever in my heart
You will remain. (Thomas Barnes)

(That was for you dear friend, I love you, and will miss you)

www.familyfriendpoems.com

 

 

Dries 2003