We need a miracle again….


 

 

 

 

I posted this a year ago.  We never did get the miracle we needed.Image (195)

Vic's Final Journey

Daniel and Vic 29-01-07

Sr Siza examined Vic today.  She phoned Dr Sue who will be in tomorrow morning.  She also brought a script with for Dalacin antibiotics.  The cellulitis has spread to all three the subcutaneous sites.

Siza expressed her concern at Vic’s decline…

Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”

That statement really shook me.  Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions…  I have never really considered living without my child.

Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters.   We are hoping that they…

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The Anniversary


There are times in the life of a terminally ill person that death is no longer the enemy but rather a friend.  Vic too surpassed all anniversaries and eventually I though she was invincible.  But with invincibility comes pain, indignity, despair, depression…  Thinking of you Mike in your brave journey.

Hospice – friend or foe?


Hospice – friend or foe?

A blogger friend, Terry, is preparing for her beloved brother Al, to move home from an Assisted Living Facility. Al suffers from Parkinson’s disease and his general health condition is extremely precarious. Terry blogged: “I finally heard nothing from the phone. I had done everything I could find to do trying not to have to make the dreaded call to Hospice. I decided not to use the Hospice here in our county. I was very disappointed in them with the lack of care they gave to my father.” http://terry1954.wordpress.com/2013/06/17/al-and-hospice-meet/

Vic wrote this on her Face Book page on the 15th of May 2011… “Today Hospice came to access my Grandfather… They dripped him & made him comfortable. He has lost his swallowing reflex, sleeps most of the day, is completely bedridden & can barely talk… The suddenness of his deterioration is very difficult to comprehend. Could you all say a big prayer for my Gramps and especially my Mom, who lost her best friend of 25 yrs., age 51 to a heart attack last Tuesday. My Mother is one of the strongest, bravest people I know… How do we say goodbye, how do I take my Boys to say their Goodbyes tomorrow, how do we accept that this incredible man has such little time left regardless of the fact that we all know that its best for him. How can I be strong for my babies when my heart breaks all over again, every day when I see him…? Especially my Eunice Friends will all remember how desperately my Gramps and Gran loved and spoilt me and how VERY MUCH they meant to me… I don’t want to live without him even though I realise that that is extremely selfish, but I love my Grandfather so desperately, it’s not fair… All I ask for is compassion… Compassion for Gramps and my Mother… Thank you to everyone for all your love & support through everything… Love Vic…”

I am a great believer in the services that Hospices offer – worldwide. Hospice cared for my Dad in the last week of his life and for Vic the last 5.5 months of her life. My experience was positive.

The hospice movement was started in the 1950’s in London by Dame Cicely Saunders, and the first hospice facility opened in London in 1967. Seven years later the United States opened their first hospice facility in 1974. In America the hospice movement has blossomed and hospice now serves 44.6% of patient deaths. Unfortunately, the median length of service for hospice patients is only 19.1 days, which means many patients did not receive the benefit of hospice care until the end of a difficult illness. In my country only 5% of the dying actually have access to Hospice services.

The original idea of hospice is that once curative treatments are no longer effective, a patient enrols in hospice to receive comfort care. In our culture of “fighting” death illness that should be addressed through ongoing decisions about the risk and benefit of interventions gets turned into a battle that should be won or lost. No one wants to be a loser, so the patient is reluctant to quit curative care until there is absolutely no hope. Many physicians are geared the same way, and their desire to give hope and “beat” disease results in a reluctance to call in hospice even when they know the situation is bleak.

Hospice care is for a terminally ill person who’s expected to have six months or less to live. This doesn’t mean that hospice care will be provided only for six months, however. Hospice care can be provided as long as the person’s doctor and hospice care team certify that the condition remains life-limiting.

The benefits of hospice and palliative care

Research published in the Journal of Pain and Symptom Management found that terminally-ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.

Source: National Hospice and Palliative Care Organization

Hospice care providers offer specialized knowledge and support at the end of life just as obstetricians and midwives lend support and expertise at the start of life. Hospice can reduce anxiety in both the terminally ill patient and his or her family by helping them make the most of the time remaining and achieve some level of acceptance.

When terminally ill patients, who are often already in a weakened physical and mental state, make the decision to receive hospice and palliative care instead of continued curative treatment, they avoid the dangers of over-treatment. In-home care from a hospice team often means the patient receives greater monitoring than he or she would in a hospital. In addition to focusing on the physical health and comfort of a patient, hospice care also focuses on the emotional needs and spiritual well-being of the terminally ill and their loved ones.

The above is all well documented facts. Yet, when a family is faced with that terrible decision to call in Hospice, it is a deeply emotional decision. The phone call is a terrifying telephone call. This is evident from Vic and Terry’s posts…..

It made me realise what a massive challenge lies ahead of us in Stepping Stone Hospice.  We need to educate the community.  We need to dispel the fear of and for Hospice.

stepping_stones_of_memory_by_nwwes-d3krg59


Bittersweet


100_9077I often wondered exactly what went through Vic’s mind in the final months of her life when she felt death sneaking up on her.  I know she was scared and lonely; she was heartbroken knowing that her boys would grow up without her….I am not stupid.  I know that Vic did not share all her fears and thoughts with me.  She was trying to protect me.

Today I read a bittersweet post.  I wept when I read the words.  It was as if I heard Vic’s voice…felt her fear…

Bittersweet
June 4, 2013 by sugarmagzz        | 6 Comments
 
It happens from time to time, I get a glimpse of my “old” life and for a fleeting second forget that I am dying of cancer. These moments are simultaneously wonderful and devastating. I might be out with a friend for lunch, pumping gas into my car, shopping for Owen, or doing dishes at my kitchen sink. It’s always random and for that brief moment I feel free, as though I’m flying and nothing is tethering me down. I feel like I did before, able to live my life without a shadow cast overhead. It doesn’t last very long because reality always comes crashing down, dragging me with it in its vice-like grip. In this moment of clarity — when it all comes rushing back to me — I can’t breathe. I’m ten again and I’ve fallen flat on my back off the trampoline — immobile, breathless, terrified.  This time there is no ground to break my fall, and so I’m left to kick and scream in mid-air with no one to hear me, no one to catch me. Alone and falling, falling so fast — past the memories that were supposed to one day be mine. I reach out to touch them and slide my fingers over their sparkling surface…
 
The look on Owen’s face when he sees Disney World for the first time.
 
The birth of our second child, to see again Andrew’s incredible capacity for the patience and self-sacrifice of fatherhood.
 
Owen’s high school and college graduation ceremonies, his wedding.
Ashlei’s wedding, the birth of her children, becoming an Aunt.
 
Retirement — relaxing on the dock looking out over the lake with him, my partner in life…reminiscing about the early days and arguing over chores, still.
 
Grandchildren.
I will not see these momentous occasions, they will occur without my physical presence.
 
I hope that there is more to this life, and that I can be there in some way, spirit or otherwise. I hope that my loved ones will always feel me near as they celebrate those unforgettable moments that life has to offer, but my sorrow at missing out on them is endless. I am so very grateful for the incredible moments I have been blessed to experience and I will hold them close until the end. When my time comes, I will take my last breath knowing that my time here was extraordinary, that during my brief existence I lived and loved as greatly as I could. I know there will be more wonderful memories to make before this happens, but everything for me is tinged with darkness — all of the good moments are bittersweet. Still I fight for them, even though they are broken and imperfect. They may not be the memories I thought they would be, but they will still be special.

Tonight I am doubting myself again.  I wonder – did I comfort my child enough?  Why was this precious child of mine condemned to a life of horrible pain and suffering?  She never truly lived!  Why did she die and bad people continue to live and prosper?  Why was she deprived of a future???  She was such a good person!!!!!

I want to hold her and protect her.  I want to tell her how much I love her.  That she is the best thing that ever happened to me.  That my life is empty without her.  That I understood her fears.  

I WANT MY CHILD BACK!!!

 

Why don’t I just go to sleep and never wake up?


IMG_7151Last year Vic said:  “Why don’t I just go to sleep and never wake up?”

This year – today – I am saying “Why don’t I just go to sleep and never wake up?”

Last year Vic said:  “My boys don’t need me anymore.  I have been sick all my life.  Even my ears hurt. ”

On the 8th of January 2013 Vic said “Mommy my room is full of angels…”

Tonight I reread something a friend sent me as a comment https://tersiaburger.wordpress.com/wp-admin/edit-comments.php?p=383&approved=1

Dear Tersia

I have been following your journey now for some time and my heart goes out to you and your family. It is NOT EASY to care for somebody that is terminally ill. It makes it even more difficult if that person is your child.
I would like to share something with you though. It is vitally important that you take care of yourself in this tiring time. Please accept all the help from family and friends that’s been offered to you. This will give you some breathing space. It will also allow Vic to know that it is okay if Mom is just having a little bit of “me” time. Her energy is very powerful and she proved it to everybody up to now that she wants to survive.

Allow all Angels and guides to assist you with the care that you and your family so much need right now. God allows you to call upon their assistance when you need them. When Jacob was struggling with an Angel he called the Angel Michael to assist him and Michael was there not only to help him, but also to guide him with whatever he was struggling with. There are many stories in the Bible and other scriptures about God’s Angels. What still amazes me is that God found it necessary to create Angels. HE knew that we and all other creatures would need assistance and comfort when we are lonely. It took me a long time to work this out. It was only after my mom passed away and I fell very ill that my awareness of these wonderful creations of God was awakened.

Dear Tersia, know they are there, they are with you. You just need to ask for their guidance and assistance. Please know that Angels come in all forms. It might be your neighbour, your friend, nursing staff or maybe a presence! Nurture yourself. Get all the friends, family and help that you can now and trust people. They will be guided and equiped with the knowledge to help you now. You need to be taken care of now and so does your family.

Your friend

Louise xxx

The angels did come to comfort my child in her most fear-filled day.

We have found many angels in human form.  Friends, family, acquaintances, WordPress Friends, Facebook friends…..

Thank you Louise for opening my eyes to the angels.   Thank you for the angels that comforted my child in her hour of need and thank you for the angels that came and took her by the hand and whisked her away to a pain-free, joy filled place.

https://tersiaburger.com/2013/01/08/gramps-was-here/
https://tersiaburger.com/2012/06/17/i-always-pray-for-you-but-you-dont-seem-to-have-a-guardian-angel-17-6-2012/

29 days – Promises Kept


My beautiful Angle Child

Today it was 29 long miserable days since you stopped breathing.

I have continued to breathe, walk, talk, eat, drink tea; I have attended meetings, cried and even laughed.  My life has continued yet part of me is dead.  I have lost my words today.  I just want to have a cup of tea with you.  I want to tell you how much I love you and how much I miss you.

Promises Kept

I’ve kept my promise,
of what I would do.
To continue to live,
my life without you.

I get up each morning,
I get through the day
struggling past tears,
every step of the way.

I go on with life with,
a forced happy face.
My heart aches badly,
for what I can’t replace.

I don’t know what to do,
to deaden this pain
It’s so hard, here without you,
where I must remain.

But I will keep my promise
and I must believe,
That you’ll be there waiting,
when it’s my time to leave.
-unknown