For true love is inexhaustible; the more you give, the more you have..


Vic as a baby

 

For true love is inexhaustible; the more you give, the more you have. And if you go to draw at the true fountainhead, the more water you draw, the more abundant is its flow. Antoine de Saint-Exupery

Love entails profound care for another person. Love is boundless.  “One can never love too much….”

No!  That is not true.  Loving too much is as scary as lovelessness.

It is hard to see how positive care can be criticized. Even normal cases of romantic love tend to create a narrow temporal perspective that focuses on the beloved and is often oblivious to other considerations. In a romantic love situation loving too much means that one person in the relationship’s love is not returned in equal measures creating an unhealthy in balance..  Profound romantic love is not in its nature excessively wrong; but some cases of such love have a greater chance of being so.

With regard to parental love, some might claim that loving a child too much could be harmful as it can spoil the child. Others might argue that the problem here is not in loving the child too much, but in not understanding what is good for her in the short and long term. To this one might respond that it is precisely the nature of intense emotions not to realize the genuine nature of the given circumstances.

When a child is ill the balance of love becomes severely disturbed.

So I am actually going to rephrase the question – Can a caregiver “care too much?”  My answer to that:  Perhaps not emotionally — hearts are pretty boundless — but in practical terms, definitely, yes. It is possible to do too much for the person you look after.

Obviously, aging and ill members of family require different levels of assistance.  Providing help is often the only humane thing we can do for our loved ones.  I have researched this and discovered that sometimes well-intentioned caregivers overdo the role without realizing it.  

The effects on the caregivers…as follows;

  1. You hurt yourself by becoming at risk for chronic stress, burnout, or ill health from not taking good care of yourself
  2. The rest of your life suffers: A spouse grows resentful and distant, you’re less attentive or fall behind at work, your child feels neglected and your friends think you’ve dropped off the planet.
  3. Your sick loved one, on whose behalf you’re working so tirelessly, is also negatively affected. He or she may feel resentment over what’s perceived as invasiveness, may become depressed over a lack of control in his or her life, or may develop “learned helplessness” and mental and physical skills suffer from lack of practice.

How do you know when you’ve crossed the line from good intentions to brink-of-backfiring? 

  • You handle all the details of the person’s life so effectively that they complain of  having “nothing to do.”  Vic for a long time said “Mom I can do my own tablets….  I said “No baby, it is fine.  Let me do it!”
  • You’re regularly in doctors’ offices – but they’re the doctors of your loved one. You can’t remember the last time you had a check-up of your own.  True!
  • You can’t remember the last time you took a “day off” — that is a day in which you left the house, left your everyday life, and did not do the majority of caregiving yourself.  Guilty!
  • Caregiving is pretty much your main hobby.  Not by choice!
  • You prepare all the meals, even though the person could do some of the prep work or cooking – even if it took longer or wasn’t done quite the way you’d prefer.  Vic prefers my cooking.
  • You’ll drop everything to take a call from your ill loved one multiple times a day and then resist bringing the conversation to a close once you realize it’s not an emergency.  Guilty, Guilty, Guilty!! 
  • You have more fixed appointments in your weekly calendar for the person you take care of than just for you –i.e. no lunch dates, standing walks with a friend, visits to a gym. True!
  • You offer to do things for others reflexively — but you’d really never think of asking someone to do something very specific for you.  Absolutely!
  • You cater to the person’s special diet needs (low salt, for example) but don’t pay any special attention to your own nutrition.  MaybeOk guilty!
  • The last time you took a vacation was a long, long time ago!.  Innocent!!!  I went to England for a week in May 2012
  • A friend or relative slips and calls you a “control freak.” So?  I don’t have a problem with it.  Vic is my child and I know best.  I love her more than any other person in the world loves her and only have her best interest at heart!

So what?  I am guilty as is many, many other caregivers in my situation.  We love so much that we want to protect, nurture and control.  By caring we think we may extend our loved one’s life.

Tonight Vic showed me a birthday card that I gave her on the 31st of August 2002.  In the February of 2002 Vic had her blotched back surgery that triggered 80 abdominal surgeries and years of pain, indignity and unbearable suffering…

I wrote You are so special. You are brave, strong, resilient and caring.  I love you so much!  Baby, from now on we are moving forward.  The end of all of this is in sight.  Remain focused and continue to fight.  I know things are getting better!”

3 October 2012 I would write: “You are so special. You have been brave, strong, resilient and caring all your life.  I love you so much!  Baby, from now on we are living one day at a time.  The end is in sight.  I am sorry I held you back for so many years.  I am so sorry for the pain I have allowed you to suffer and endure seeking a cure.  Know whatever I did was done in the name of love.  Please forgive me.  It is okay to let go now.  Go in peace my beloved child.  I love you more than life!”

So, in conclusion I must admit to myself, I have loved Vic with an obsessive, possessive all-consuming love all her life.  From the first time she moved in my belly I loved her.  When she wrapped her tiny fingers around mine I was lost….  I love you too much, child of mine, now and forever!

 

5 Stages of Dying


It became crystal clear to me when Vic yelled at me in the ICU that she had deep-seated anger issues with me and where she was in her journey.  Dying is unknown territory and none of us have walked this road. Yet we are all morbidly curious about dying. Everybody has some shadows of uncertainty.

According to Hospice there are FIVE stages of dying.

1.      DENIAL: “I’m too young to die. I’m not ready to die (is anyone ever really ready?)”  It became clear to me that despite the fact that Vic was sentenced ten years ago she is still in denial. Even after Brendan had informed her that nothing more could be done for her she still clings to her lifelong defiance of death. The prediction from one’s physician of imminent death can do several things. It can give you time to prepare, take care of business, close doors, make amends. The shock begins to ebb as you come to grips with approaching death.  Vic has some doors to still close.  Her business is in order.  She has written letters to her loved ones, bought major birthday gifts and cards for the boys

 2.      ANGER: Suddenly the terminally ill person is no longer in control of their life.  They have no choice any more – the die is cast….. They are going to die. This is really where Vic is now.  She has lost control of her life.  At the age of 37 she is living in her mother’s home, decisions are made for her she has become a child again.  Her anger on Sunday morning was directed at me.  Her profuse sense of helplessness and loss of control is however not a new feeling.  Vicky has endured a long, debilitating illness.  Doctor error has robbed her of a life.  Illness has robbed her of her dignity.  She is angry with God for allowing this to happen to her.  She is angry for God not taking her.  On Monday afternoon she said “Mommy, God does not even want me…”She has been robbed the opportunity to see her sons complete school, university, get engaged and eventually marry……  Many people die too early but at 37 it is mainly due to misfortune, wrong place wrong time, an accident…..  At the age of 27 Vicky was sentenced to death…..

 3.      BARGAINING: I do not know what bargaining Vic has done with her God.  I know that I have made lots of bargains with my God.  Just one more Christmas….. Just one more birthday…..

 4.      DEPRESSION: Knowing that you are dying must be depressing!  This must be a normal part of the process of preparing to die. Vic is depressed about her inability to deal with her responsibilities. Vic is too ill to get away from the symptoms of her illness …..  She waits for death every day. Vic is depressed about the pain that her illness is causing her sons, friends and family.  Vic is depressed because she feels that she has failed her sons.   Vic is depressed because she is lingering…. Vic is depressed about the loss of love that she has suffered.  Vic is depressed period!  But with good reason.  Antidepressant’s are part of the pain control regime.  If it is helping for her pain that is great.  I hate to think what her mental condition would have been if she had not been on antidepressants.

 5.      ACCEPTANCE: Vic is not at this stage yet.  This is one of the main reasons why we need Hospice.  Brendan (her Gastroenterologist) referred her to a councillor last year to guide her into this phase of her journey.  Vic went a couple of times and then it became a matter of budget – medication or counselling.  Medication won.  Hospice defines acceptance as follows…”Acceptance is NOT: doing nothing, defeat, resignation or submission.  Acceptance IS: coming to terms with reality. It is accepting that the world will still go on without you. Death is after all, just a part of LIFE.”

I see absolutely no peace in Vic.  She is still kicking and fighting.  At times she may fool herself into thinking or believing that she has accepted her situation but it is crystal clear to me that it is not the case.

We met as a family on Tuesday evening to discuss all our frustrations.  It becomes difficult to handle one’s day to day frustrations as we have different agenda’s.  A while back Vic asked my permission to give up.  She spoke to the boys.  We cried and gave her “permission”. 

The family immediately went into palliative mode.  No demands or expectations for any normal functionality from us to Vic….. Therein lies the issue.  We became an “Us” and “Her”… “Us” became the protectors and “Her” became the invalid.  We tippy toed around Vic.  The boys stop bothering her with everyday issues like “Can we go to the movies”; “please pick me up at 16:00”; “Do I have to go to extra lessons?” When we walked into her room and she was sleeping we would turn around and walk out.  We would show no concern for the amount of pain medication Vic was on. 

It is so easy to slip into a “mode”.  I took all responsibilities out of Vicky’s hands, we as a family organized our lives around her pain levels and energy (or lack thereof) levels, we stopped laughing and living in our house.  We were all dying!

When she lashed out at me in ICU I realized that we had serious problems.  Vic was not ready for Stage 5.  She started kicking against death – again.  Her fight is back.

It is however a difficult and delicate balance between pain-free and functional…..  Vic said that she wanted to reduce her pain medication as maybe she would not be so tired all the time.  By Monday evening she was in so much pain that she was vomiting.  She could not keep tablets down….. It took two days to get her pain under control again.

I have also read Katie Mitchells Blog on Chronic Pain and the way that brave lady articulates her battle with pain truly opened my eyes.  I realize now that I cannot take living away from Vic whilst she is still breathing.  I have to let go.  I cannot protect her against pain.  I cannot protect her against death.  I have to try to look at her through her pain filled eyes as I don’t understand pain or her frustration.  I am active and busy.  Today I joined a gym so I can train with the boys.  I do the things with her sons that Vic would LOVE to do!  A couple of weeks ago Vic said “You are the fun person in the family.  You do all the fun things with the boys” Obviously there must be resentment and anger (Stage 1). 

But we live in a civilized home.  We don’t scream, shout or curse.  We bury things under the carpet.  We walk away from conflict so we don’t know what the other is thinking or feeling.  We only see the veneer..… How terribly sad!!  We have lost our ability to function properly.

So from now when I am frustrated with Vicky attempts at doing things for herself or the boys I will leave her be!!  PLEASE God help me!!!!  I am such a control freak!!!  I will endeavor to not stop her from going for a cup of coffee with one of her friends.  I will just pick up the pieces afterwards. 

I have to stop being selfish.  I realize that I was trying to keep Vicky pain-free as it is easier for me to handle!!  Pain free means medication on the strict regime, no strenuous activities, protected and wrapped up in cotton wool.  Vic must make her own painful decisions.  If she wants to take the boys to school who am I to stop her?  Of course she must but not on 400 mg of morphine! 

The problem is that I look at Vic and all I see is that fragile little toddler…… And she is sick.  Very sick!  I want to protect her, breathe for her, die for her.  Vicky is my baby.

Thank you God! 20.7.2012


Vic and her big sister Esther

It was with fear and trepidation that I gave Vic her medication last night.  Esther, (Vic’s big sister and a pharmacist) asked me whether the Jurnista replaced the morphine and was just a little surprised that it was in addition to the Morphine, Neurontin, Degrenol and Stilpayne.   My research really scared me yet strangely I was at peace.

By 24:00 Vic felt no difference and her pain was at a solid 9.  By 02:00 her pain was a little easier.  Vic had a fairly good night.  But she is having a very good day!!!  The Jurnista appears to be working!  Vic rested well this morning and went out for coffee with Tracey!  How absolutely amazing is that!

Last Sunday, Frik, a Christian colleague phoned me after church and asked me to give Vic a message.  “Please tell Vicky that God wants me to tell her that He loves her”…   She was too ill and I only told her on Tuesday.  I missed the Tuesday Pain Clinic appointment… On Thursday the Pain Clinic doctor is a wonderful, compassionate, young Muslim man who showed mercy and compassion …

My faith has often wavered over the past ten years.  Not in God but in a God of Mercy.  The actions of the church, Christians, doctors, nursing staff, radiologists, Hospice, family and friends, mostly reflected a cold, loveless society that does not begin to understand what compassion means

When we first received Vic’s death sentence there was an absolute outpouring of love.  But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives.  My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace.  Well, this time you cannot hurt us because you are faceless.

I am digressing.  This week we were reminded that there are still angels around.   A compassionate man who prays for pain relief of a young woman he has never met, a doctor who prescribes palliative care medication…  The Jurnista could hasten Vic’s imminent demise but I don’t care.  I would rather she spend one pain free day with her boys and family than a lifetime in the pain that she lives with.

Many people have left wonderful caring messages on my email, comments on the blog and Facebook.  Thank you!  It really does mean a lot to us.   Vic does not read my blog neither do her boys.  But Vic has truly appreciated the contact some of her old school friends have made.  As I said before, dying is a lonely business!

But today we celebrate the wonderful new drug!  I thank God for sending angels along our way.  I thank God for His message through Frik, when I was at the lowest low in my life!!  I thank God for Dr Jaffer Hussain!  I thank God for your messages of encouragement and above all I thank God for Vic’s good day!  Thank you, thank you, thank you God!  Even if it is only one good day!

A day in the life of Vic 15.7.2012


A day in the life of Vic.

A day in the life of Vic


Image“Just because her eyes don’t tear doesn’t mean her heart doesn’t cry.  And just because she comes off strong, doesn’t mean there’s nothing wrong.”

My beautiful little Vic is not in a good place emotionally.  She feels that she has lost almost everything that is precious to her.  She has no future that is not encased in pain, loneliness and further loss.  Vic does not have a job to look forward to or even a shopping excursion.  There is no hope or prospect of a holiday…not even a visit to a spa, a manicure or a pedicure…. 

A good day is a day without vomiting too much, some time with the boys, maybe a visit from a sister or friend…

Imagine if that was all there was to your life? Imagine a life like Vic’s…

What goes through her mind?  Vic does not wallow in misery all the time.  She sleeps…Maybe it is not her body shutting down, maybe it is her mind shutting out her situation.

I sit here tonight and I am planning tomorrow.  I have to arrange for our oak tree to be pruned and treated, I have to approve a sighting system for the Middle East, inspect some armoured vehicles, organise flights for some staff to Saudi, pick the boys up after school, arrange Jared’s extra maths, sign up at a gym…  dentist appointment at 09:30 and take care of my beautiful, sick little girl.

Tomorrow morning Vic will have breakfast and then 39 tablets.  The boys will kiss her goodbye and Vic will sleep again.  Vic will wake up at 11:00, have coffee and tablets.  We will try and get her bathed before the boys get home.  Primrose will change her linen and clean her room whilst I am bathing and dressing her.   Vic will have lunch and fall asleep again…exhausted from the effort of bathing.  The boys may or may not find her awake when they come home.  Vic will wake up at 15:00 and chat with the boys for a couple of minutes.  She will have coffee and tablets.  She will sleep until dinner time… Take 39 tablets….. This is her life!  The only deviation is the vomit breaks…sometimes it is a couple of bouts a day and sometimes it is at night.  Sometimes it is during the day and the night…Extra baths to clean up and extra linen changes…

Her TV remains on 24/7 but I don’t know whether she has watched a complete program in months. 

Vic no longer reads, hopes or lives.  Vic no longer joins us in the TV lounge or for dinner.  She is too ill to get out of bed.

ger Vic very seldom cries anymore.  She is stoic in her lonely journey.

As parents we try not to wallow in the bad prognosis, but we need to be honest with what the prognosis means and the inevitable outcome. We have to accept reality.  We have to guide our family through this.  Help the boys to get through this as unscathed as humanly possible!  We also have to provide an environment that will be peaceful for Vic and allow her space to come to terms with her life.

The most difficult thing for the family  is however to tackle the problems of a very ill child rather than each other.

We love one another and support one another.  We will survive this ordeal as a family.  We are not perfect but who is?  We err in love.  But we love deeply and always and forever!

I am dying 9.7.2012


I am dying 9.7.2012.