Quiet waters of peace


Lead me to the quiet waters of peace
Lead me to the quiet waters of peace

 

 

 

 

 

 

 

 

 

 

 

Vic is very restless and agitated.  Hospice says that at this stage they normally sedate the patients to make the passing easier.  It would be a wonderful solution.  Vic’s mind is mostly crystal clear and busier than ever.  She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family.  Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”

“Oh…” she said.  “Why not?  I think I will…”

We laughed.

In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.

Last night was very difficult.  The Pethidine makes her hyper.  She fights sleep at night!  Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight.  “Don’t leave me Daddy!  Please don’t leave me!!!  I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try and get out of bed, so she can stay awake!

In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed.  She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”

I know she is confused at times.  I will not allow these words to haunt me later.  She “sees” people.  She babbles non-stop.

The weight is falling off her.  Her trembling fingers are bony, almost skeleton like.  Her eyes are sunken and reflect her pain and anguish.  My poor baby is starving to death!  She has absolutely no appetite.  I don’t know when last she was hungry or able to eat.

Esther and Leon came to visit today.  Esther was very emotional when she saw Vic.  I know she said her goodbyes today.  I could see that they had spoken to their boys.  Both Henk and Yuri kissed Vic whilst she was sleeping.

Jared asked me today why I don’t sedate Vic.  I explained to him that she refuses to be sedated.  “I think it will be better for Mom to sleep all the time now Oumie.  It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”

Oh Lord how do I make this easier for my family?  How do I spare the boys the pain of seeing their mother dying bit by bit?  Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?

I wish Vic was in a hospital where the decisions weren’t mine.  But I promised Vic “no more hospitals”.  I will never go back on my word.

I am babbling.

Vic is very restless and agitated.  Hospice says that at this stage they normally sedate the patients to make the passing easier.  It would be a wonderful solution.  Vic’s mind is mostly crystal clear and busier than ever.  She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family.  Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”

“Oh…” she said.  “Why not?  I think I will…”

We laughed.

In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.

Last night was very difficult.  The Pethidine makes her hyper.  She fights sleep at night!  Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight.  “Don’t leave me Daddy!  Please don’t leave me!!!  I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try to get out of bed so she can stay awake!

In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed.  She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”

I know she is confused at times.  I will not allow these words to haunt me later.  She “sees” people.  She babbles non-stop.

The weight is falling off her.  Her trembling fingers are bony, almost skeleton like.  Her eyes are sunken and reflect her pain and anguish.  My poor baby is starving to death!  She has absolutely no appetite.  I don’t know when last she was hungry or able to eat.

Esther and Leon came to visit today.  Esther was very emotional when she saw Vic.  I know she said her goodbyes today.  I could see that they had spoken to their boys.  Both Henk and Yuri kissed Vic whilst she was sleeping.

Jared asked me today why I don’t sedate Vic.  I explained to him that she refuses to be sedated.  “I think it will be better for Mom to sleep all the time now Oumie.  It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”

Oh Lord how do I make this easier for my family?  How do I spare the boys the pain of seeing their mother dying bit by bit?  Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?

I wish Vic was in a hospital where the decisions weren’t mine.  But I promised Vic “no more hospitals”.  I will never go back on my word.

I am babbling.

” Sometimes the pain’s too strong to bear…and life gets so hard you just don’t care.  You feel so alone you just sit and cry…every second you wish you could die.”  

 

 

Happy birthday to you…


I hardly received any 2013 New Year’s wishes.  Normally I would receive so many beautiful wishes but this year I received messages for a” peaceful New Year’s Eve filled with laughter and good memories…”

Last night my sister said in a text message “what tears do 2013 hold for you?  Maybe it should stay 2012”…

Jared went a friend’s home; Danie went to bed early – he is coming down with flu; Vic was asleep so that left Jon-Daniel and I.  We watched Comedy Central and had some good laughs waiting for 2012 to end.

Jon-Daniel loves making his Mommy laugh.  In a way I suppose he uses humour as a coping mechanism.

“I think we should wake Mom up at 12” I said

“Okay…Let’s sing Happy Birthday to Mom….” He said with a twinkle in his eyes.

As the hooters and sirens started going Jon-Daniel and I sneaked into Vic’s room and sang “Happy Birthday to you…”  Vic opened her eyes and said “What is happening?” and immediately fell asleep again.

The joke was on us.

Today was a quiet day.  The boys spend some wonderful quality time with their Mom.  Danie remained in bed until almost 4pm as he is feeling lousy from the flu.  We all drifted in and out Vic’s room.  In the afternoon Jared went for a swim.  Vic went outside and spoke to him.

Jared had some questions and she patiently explained to him what an “Executor’s” duties are.  She explained why Leon and I were the Executors of her will and the Trustees of their Trust. (I got some lovely photos of Vic chatting to the boys!)  Vic tried to show Jared that she could whistle through an acorn… Jon-Daniel taught her! As much as she tried she could not get a sound out of the acorn.  To everybody’s laughter she said “But I can do it!”

We convinced her that she should get onto the inflated lilo.  The cold water would reduce her body temperature and the sun would be good for the jaundice.  Very reluctantly she got onto the “non- life-saving inflatable device”.  I got into the pool with Vic.

Esther and Yuri arrived and she made a dash for her camera…  later Leon and Henk arrived.  The boys swam and laughed and played…

It was a wonderful day filled with glorious memories.  We laughed and joked and eventually ate.  Esther lay with Vic and they spoke about where Vic was in her journey.

It was a special day.

I think friends and family don’t know what to wish us…How do you say “Happy New Year” to a household where death is knocking on the door?  I would not know what to say to us if I wasn’t me…

But from our home to yours: We wish you a great 2013.  We hope that 2013 is filled with laughter, good health, abundance and time to do some good every day.  We thank you for your love and support.  Thank you for your prayers and words of encouragement.  You have been such an amazing source of comfort to us.

Thank you Hospice for giving us the means to have these special memories!  Thank you to the manufacturers of Morphine, Pethidine, Stemitil and Buscopan…

 

Jon-Daniel teaching his Mom to whistle through an acorn...
Jon-Daniel teaching his Mom to whistle through an acorn…
Vic trying to whistle through an acorn...
Vic trying to whistle through an acorn…

 

 

Jared gently helping his Mom
Jared gently helping his Mom

 

Jared and Vic having a chat
Jared and Vic having a chat

 

Esther and I with precious Vicky
Esther and I with precious Vicky

 

Hi Sis, you know I love you....
Hi Sis, you know I love you….

 

 

 

 

 

 

The right to live with dignity


Live_Life_to_the_Fullest_by_HM_Photography

I just read two very insightful posts that Andrew of http://lymphomajourney.wordpress.com posted/reblogged.  The first was under the heading “Why not choose death” http://lymphomajourney.wordpress.com/2012/12/04/why-not-choose-death-sunrise-rounds-sunrise-rounds/ and the second “Morphine too little or to much?” http://sunriserounds.com/morphine-too-much-or-too-little/

I read the articles through the eyes of a primary caregiver who has prayed for her child’s death many, many days.  https://tersiaburger.wordpress.com/wp-admin/post.php?post=3&action=edit .  BH, (Before Hospice), I often blogged about The Right to Die with Dignity…..

Over the past 10 years I have seen my child suffer so much indignity and indescribable pain.  I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks.  I have wept before God and prayed for Vic to die.  I begged God to take away her suffering.

I advocated the right to die with dignity.

Vic has been in the care of Hospice for the past 3 months.  In this time Vic has been given a new lease on life.  Hospice cannot change the prognosis but they have given Vic quality of Life.  For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening.  She completed her photo albums.

Vic is in renal and hepatic failure.  Her tissue is horrendous.  Her pain is under control!  As and when symptoms surface, Vic’s medication is adjusted.  She is treated with compassion and respect.  Her wish is the teams command….

As the situation is now I am so grateful that my child is alive.  I treasure every breath that she takes.  We chat, laugh and cry.  We dream of going to Italy in 2013.

So given the situation now what would I advocate – The right to die with dignity or the right to live?

I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end.  If it remains as great as it is now of course I want her to live.  But it is key that Vic is allowed to live with Dignity!

As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person.  It is not for family or physicians to play God.  The patient has to be the only decision maker.

I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.

We all have the right to Live with Dignity.   There is a huge difference between breathing and living…

Breathe may refer to:  Breathing, to inhale and exhale consecutively, drawing oxygen from the air, through the lung http://en.wikipedia.org/wiki/Breathing

Life (cf. biota) is a characteristic that distinguishes objects that have signaling  and self-sustaining processes from those that do not,[1][2] either because such functions have ceased (death), or else because they lack such functions and are classified as inanimate. http://en.wikipedia.org/wiki/Life

BH (before Hospice) Vic breathed.  Now she lives.  She may not live for a long time but she has the right to live with dignity!

 

Relevant posts:

https://tersiaburger.com/2012/06/04/5-6-2012/ No one will love me ever again

https://tersiaburger.com/2012/06/12/12-6-2012/ (Eat, sleep, Vomit)

https://tersiaburger.com/2012/08/17/the-right-to-die/

https://tersiaburger.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-things-to-do-right/

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2012/09/14/palliative-care/

https://tersiaburger.com/2012/08/22/rest-in-peace-tony-nicklinson-brave-warrior/

https://tersiaburger.com/2012/08/20/768/ (How to die in Oregan)

https://tersiaburger.com/2012/08/02/5-stages-of-dying/

https://tersiaburger.com/2012/06/13/im-going-to-dance-my-way-to-heaven-because-ive-already-been-through-hell-14-6-2012/

10 days to Christmas Eve…


DSC_0037

It has been a crazy week.  Between Vic, final 2012 business meetings, a brochure photo shoot, visiting grandchildren, Jared’s birthday party and Hospice meetings I have run around in circles.  I have not had time to blog or read all the blogs I am following.

Vic has had a reasonable week.  I can see her getting weaker every day.  At night I give Vic a Pethidine, Zantac and Buscopan injection.  The Pethidine makes her sleepy.   During the day she is able to tell me she needs an anti-nausea injection.  At night the drug-induced sleep does not allow her the luxury of early warning.  Vic projectile vomits every day of her life!

Vic has also had a couple of uncontrolled sneezing attacks and lots of hiccups.  I fear she will fracture ribs and vertebrae if we are not able to control this quickly.  I have started giving her antihistamine tablets.  Hospice tells me it is a symptom of the kidney and liver failure and will get much worse.

Her arm is still very inflamed and painful.  We are now on the 3rd round of antibiotics.  The tissue in her derriere is very poor.  It is lumpy and bruised.  It is becoming more and more difficult finding good tissue where I can inject her.

Emotionally it is really a difficult time.  Vic is spending as much time with the boys as possible.  She is doing a lot of what appears to be “lasts”….

It is 11 days to Christmas, and we are looking forward to a quiet Christmas Eve with the family.  Our gifts are not as extravagant as other years.  Our priorities are simply different this year. This year Christmas will be a time of love and togetherness.

It is 10 days to Christmas Eve…

Vic is sleeping peacefully


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It is 12:42am and Vic is sleeping peacefully.  She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!

Vic’s legs are growing very weak.  The cellulitis on her arm has worsened despite the antibiotics.  It is now oozing pus.  Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics.  She had a violent vomiting spell just after she took her antibiotic tablets tonight.  It is very difficult for her to keep tablets and food down.  Despite the six-hourly anti-nausea injections she has….  And of course there is the problem of the poor absorption.

“I can’t do this anymore…” Vic mumbled to herself tonight after the vomiting episode.

The situation is getting to Danie.  My poor husband tries so hard to be strong and make life easier for the rest of us.  Jared and Jon-Daniel are deeply conscious of the situation.

“Life will be horrible without Mommy” Jared said today.  “She takes so much of our time, and such a big space in our lives….  Mommy has such a presence Oumie…”

We spoke about his little brother and Jon-Daniel’s inability and aversion to discuss his emotions.

I realised that the boys are already starting to dread the void Vic’s passing will leave.  Anticipatory grief is a killer.  It is unfair that these two beautiful boys have to experience so much pain and hardship in their young lives.  They should be riding their bikes and getting up to mischief.  Now they are stressed out because their mother is dying.

I am too tired to write anything that makes sense.  I just need to record today.  I never want to forget today.

I want to remember how I felt when I lay with my child this afternoon.  I want to remember her tears when she spoke to her sister.  I want to remember the smell of her vomit.  Maybe it will make it easier to accept later on.

“Next year my mom and I are going to Italy”


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Sue saw Vic this morning.   Her liver is very distended and exerting pressure on the right lung.   I now have to use her little arms and legs as injection sites.  I HATE injecting her in the legs.  The doctor fears that she will develop abscesses on her bum.  The entire derriere area is full of lumps and bruises.  When I inject her the injection site becomes “lemon-peely”.  The immediate area swells and becomes hard.  Sometimes there is a fair amount of bleeding or serum loss.  Her tissue is POOR!!!

I discussed various central line options with Sue.  Vic refused point-blank to even consider it.  Vic has been mainlined so many times.  She always asked the anaesthetists to not tape her hair to the central line….  Vic went into septic shock from a CVV, had the needle inserted into an accessory vein and had to be returned to theatre for the removal of the needle and the cauterization of the puncture wound in the vein….  Due to her poor tissue and bleeding tendencies it took two hours!

So we discussed the way forward.

Sue gave us a script for Pethidine.  We will alternate the morphine and Pethidine six-hourly.  The poor pharmacist….  She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.

Now it is only a matter of time.  Vic’s organs are slowly shutting down.  My child is gently being eased into death.

The entire day it echoed through my mind “we cannot stop this.  It is happening”

Vic is calm and serene.

“Next year my mom and I are going to Italy” she told Sue today.

“Then I can die…”

“We will find a way my love” Sue said…

“It is closer that she realises” Sue said to me at her car

Do I tell her?” I asked

“No, her body will…” Sue said

I cannot bear the thought of living without Vic.