The world’s greatest statesman, Nelson Mandela, died. Rest in peace Mr President.
You know? I was just sitting here today; thinking about everything and I mean everything that I have written and do write about.
It occurred to me that when I began writing, I had a goal; a mission.
It was to expose the lies that our government tells us and to encourage the rich to pay more taxes. A pretty modest goal; I think.
As much as I have tried to fulfill that goal; it has become clear to me that what I once thought a modest goal; was in fact; a huge over reach.
It didn’t take very long or very much energy to find out that the ways our government lies to us are so many that it would take the rest of my life and many more to even attempt to detail them.
As far as the rich paying more taxes? Well that truly did turn out to be a modest goal. Turns out that while it is true that the wealthy pay little to no taxes on much of their money; and the poor and middle class pay the bulk of the taxes because they are the ones affected by the various fees and sales taxes and payroll taxes etc.; this is a small problem and one that would be solved automatically if the rest of our problems solved. Even if the biggest few of our problems could be solved.
Number one; biggest problem we have today? Racism. No doubt.
Some people have asked me why I like Black people so much?
I say it’s cause they got good weed; good attitude; Reggae; the long-suffering of a saint; and have been shafted from the get-go; and need all the support they can get from those of us Caucasians; Whites; who are able to see their situation as it really is.
The truth is that I don’t love Black people so much and I don’t like people because they are black. I like people because they are people; black; white or whatever. Just because you are black; doesn’t make me feel obligated to like you. Neither does being white or any other color. I can dislike you with the best of them if I think you’re an asshole. So I guess I do discriminate;…against Assholes.
You know; you can’t take something like skin-tone with any seriousness. The very acknowledgement that you can detect it is an insult to us all. Because knowing it is of no; repeat that; NO value.
But what isn’t ok is for anyone to assume what color he is; based on his actions.
One is racism; the other a good report.
Being anti-racist or non-racist is a much maligned and oft misunderstood stance to take.
I have been accused of everything from ass-kissing to hidden sexual tastes based on skin-tone. My responses have often been less than polite but in my better; less angry moments I have managed to explain that I fail to understand what these folks believe to be my motive for the ass-kissing; unless it has to do with my supposed sexual proclivity which; I have explained is non-existent. Not that I have anything against Black women or Yellow women; or Red women. I dig the rainbow but I am a married man; married to a white woman who I am very much in Love with and who is also a non-racist sort of chick and I take my vowels very seriously for reasons which are partly biblical in origin but primarily about human dignity, respect, self-respect, love, and a sincere desire to avoid doing more damage than I absolutely must as I travel through this life. My failures to date are enough for my ability to carry their guilt and I try to be very careful about what I put out into the universe.
Let’s face the facts. Let’s not pretend to be blind or deaf or stupid.
Let us admit that we are at least semi-intelligent people who are able to say what we see; who will not ignore the nose on our face or say “What’s the Buzz?” when we hear the cries of our brothers.
Think of what your country would be like if there was no racism. Think of all the problems, violence, hatred and grief could be saved. Think of all we could do if instead of battling each other; we could work together free of those destructive forces that hold us back now.
Hard isn’t it? It is hard. It is hard because we as a nation have been programmed to hate each other. It’s everywhere. Giving in to it is so much easier than fighting it. If we are to escape racism; we must seek knowledge ourselves because the schools; the courts; the military; and the rest of the institutions of our society are woefully unenthusiastic and the government way less than zealous at seeking the truth and peace between us and us.
So when I see a crime; a person being beaten; when I hear the cries of children; not abstract children of a proverbial nature but the cries of real children who live around the corner from me or go to school with my kids or appear in TV videos of brutal attacks around the world; I have discovered that I feel that I must speak out. I must tell the truth.
The truth is usually not as hard to identify as you have been led to believe.
You are not as inept and stupid as you have been led to believe.
If we are standing before a great hole in the ground and I tell you not to jump and someone else says it’s ok to jump; you know the truth; you have the prior knowledge to sort it out and figure which one is telling the truth.
Well you can do the same thing when you are confronted with other issues and problems; if; you don’t allow your ego; your vanity; to get in your eyes and ears. If you can decide to stand up; a person of Integrity. Sadly, not all can.
What I discovered when I took a long look into the abyss is that I can’t live with myself if I don’t speak out and I can’t stand to see the suffering of people especially but not exclusively children; of any color you care to name.
It hurts me. I am no longer ashamed to say that many of the atrocities I see and hear of bring me to tears of sadness and frustration. I don’t understand how they don’t have the same effect on everyone.
One thing that Clinical Depression does for you instead of to you is to give you the ability for introspection. What the end of that will be is determined by the severity of your depression, the treatment you receive and what you decide to do with it when you can do something. Confusing? You should live through it and figure this shit out for yourself.
I figured out a whole bunch of shit. Much of it; enough to send you back into the fucking abyss by itself.
But after my last sojourn there, I became convinced that I was wasting what time I have left on this Earth in redundancy.
My next post will not be disconnected from this subject. It will deal with racism also.
And there’s a movie for those who prefer a more passive learning experience.
Sadly, we are not alone among nations when it comes to being racist. We should be the first to actually address the problem in a way that will work. This though, can only happen when we want it. We can have anything if we really want it enough; or rather if enough of us really want it.
Reblogged from: Angryman! Why You Always Talkin’ About Racism?.
it was only one hour ago
it was all so different then
there’s nothing yet has really sunk in
looks like it always did
this flesh and bone
it’s just the way that you would tied in
now there’s no-one home
i grieve for you
you leave me
‘so hard to move on
still loving what’s gone
they say life carries on
carries on and on and on and on
the news that truly shocks is the empty empty page
while the final rattle rocks its empty empty cage
and i can’t handle this
i grieve for you
you leave me
let it out and move on
missing what’s gone
they say life carries on
they say life carries on and on and on
life carries on
in the people i meet
in everyone that’s out on the street
in all the dogs and cats
in the flies and rats
in the rot and the rust
in the ashes and the dust
life carries on and on and on and on
life carries on and on and on
it’s just the car that we ride in
a home we reside in
the face that we hide in
the way we are tied in
and life carries on and on and on and on
life carries on and on and on
did I dream this belief?
or did i believe this dream?
now i can find relief
After my post https://tersiaburger.com/2013/06/16/what-is-the-difference-between-alzheimers-and-dementia/
I received a couple of emails and comments that I kept private and did not approve for publication. I decided to do this post at the time. Alzheimers is a terminal disease. Alzheimers has no survivors. The harsh truth is that there is no cure. There is no treatment.
Alzheimer’s disease is not just memory loss – Alzheimer’s kills.
• Among 70-year-olds with Alzheimer’s, 61 percent are expected to die within a decade. Among 70-year-olds without Alzheimer’s, only 30 percent will die within a decade.
Change in Number of Deaths
between 2000 and 2010
• Alzheimer’s is the only cause of death among the top 10 in America without a way to prevent it, cure it or even slow its progression.
• Dementia is the second largest contributor to death among older Americans, second only to heart failure.
Alzheimer’s disease is the 6th
Today, there are no survivors of Alzheimer’s. If you do not die from it, you die with it.
• One in every three seniors dies with Alzheimer’s or another dementia.
• In 2013, an estimated 450,000 people in the United States will die with Alzheimer’s, meaning they will die after developing the disease.
• Today, over 5 million Americans are living with Alzheimer’s disease, including an estimated 200,000 under the age of 65. By 2050, up to 16 million will have the disease.
• Of Americans aged 65 and over, 1 in 9 has Alzheimer’s, and 1 in 3 people aged 85 and older has the disease.
• Another American develops Alzheimer’s disease every 68 seconds. In 2050, an American will develop the disease every 33 seconds.
Alzheimer’s takes a devastating toll not just on those with the disease – but also on their caregivers. http://www.alz.org/documents_custom/2013_facts_figures_fact_sheet.pdf
Statistics can be extremely misleading. Alzheimer’s disease cannot be definitely diagnosed until after death, when the brain can be closely examined for certain microscopic changes caused by the disease. However, through thorough testing and a “process of elimination,” doctors today can diagnose what they refer to as probable Alzheimer’s disease with almost 90% accuracy.
My father’s death certificate stated “Natural Causes“… In South Africa and most countries, the law requires that a death investigation, or autopsy, be performed when someone dies under mysterious circumstances. Autopsies are usually done if the death was caused by injury, poisoning, infectious complications, foul play (homicide), or when someone dies without an attending physician. If any one of these criteria is present, the local coroner or medical examiner will perform an autopsy to determine the cause of death.
So what do Alzheimers Patients die from?
Stroke is a major cause of death in Alzheimer’s patients
Falling. Slower reaction time, difficulty recognizing changes in the height or depth of a step, can lead to tripping and falling. Changes in balance and coordination combined with poor memory can make it difficult for a person with Alzheimer’s to get from one place to another and avoid hazardous objects at the same time. He may miss a step while looking for a door or trying to listen to someone’s conversation.
Pulmonary aspiration. Aspiration is the entry of secretions or foreign material into the trachea and lungs. Alzheimer’s patients forget how to eat and/or swallow and might start choking on their food. The food basically goes down the wrong pipe. A tell-tale sign is when they start coughing whilst eating. This can lead to infection and pneumonia.
Pneumonia is a major cause of death in Alzheimer’s and dementia patients. Decreased mobility and pulmonary aspiration are major causes of pneumonia…
Urinary Tract Infection (UTI). An unidentified UTI can lead to sepsis which can in turn result in organ failure…
Dad in the ambulance en-route to hospital 1
On the 9th of May 2011 my dad had a bad fall. He was taken to hospital by ambulance and admitted to ICU as he required 24/7 care. On the 10th I met with the medical team. My Dad appeared to be in a coma. The Physician said that Dad had pneumonia. The Neurologist confirmed that Dad was in the Severe advanced stage of Alzheimers. The Specialist Surgeon wanted to operate on my Dad’s aneurysm….
I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia. There would be no operation. The Physician agreed with my decision.
On the 14th of May I took my Dad home. Hospice evaluated Dad and accepted him as a case. Hospice started administering Morphine, Dormicum and Serenace subcutaneously and my beautiful dad was comfortable. My Dad battled to swallow and I was pretty distressed about his liquid and food intake. Dad’s core body temp had dropped to 34.5 degrees C. Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake. On the 17th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …
Twenty three days after his first fall my Dad lost his battle against Alzheimers when he forgot how to breathe.
Did he die from Alzheimers or pneumonia? Maybe it was the fall or even the aneurysm? His death certificate read “Natural Causes” – my Dad is not an Alzheimer statistic…
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.
I read this lovely post that truly brought a smile to my face. – Thank you Kate! This post brought a smile to my face and a lovely memory moment to my heart. I am not going to spoil this funny post by telling you what it is about as I would encourage you to pop over and read it personally. I cannot do it justice. http://kateswaffer.com/2013/05/28/tuesday-humour-is-god-a-woman/
For one or other reason this post reminded me of a funny incident when Vic was in Gr 2 at a Convent.
Vic was a very bright little girl and a natural-born leader. She was an excellent little speller. Vic was never allowed to participate in any Physical Training lessons at school. The poor little poppet had to sit and watch her little friends running around, honing their developmental skills through exercise.
It is not clear what the reason was, but one of her little friends decided that she would join Vic on the benches – just watching. Maybe she forgot her PT clothes at home, maybe she wanted to keep Vic company – who knows? Mrs Bowling was the PT teacher. The kids were pretty scared of her… She had a booming voice and intimidating stature.
When I arrived at school that afternoon I was taken aside by Vic’s class teacher, Sr Norbitt. In a hushed tone she told me that I had to see the principal… There had been an “incident”. Dear Sr Norbitt’s face had a disapproving scowl on it, but she did assure me that Vicky was not ill or hurt…
I was asked to take a seat in the principal’s office. I was really very concerned that something serious had happened.
Mother Superior proceeded to tell me that Vic’s little friend had presented a letter to Mrs Bowling excusing her from PT. She took out the note and I immediately recognised Vic’s baby handwriting…big, perfectly rounded letters saying…
“Dear Mrs Bowling Mirella can not do PT. She is sick. She has X-Rays Mirella Mommy”
When the girls were confronted with this very obvious forgery, they admitted that Vic had written the letter because she was the best speller in the class and knew about diseases because she was always sick… Vic wanted to really impress the girls but the only “sick” word she could spell was….. X-Rays!
They were given a week’s detention.
Who knew that you could fly dear Vic?
One day you sprouted wings
Valiantly ascending heavenward
despite all you had endured.
At last the pain subsided
and all at once was gone.
You left a radiant legacy
that lovingly carries on.
A beautiful spirit in the sky.
Now free from sorrow, hurt and pain.
so many loved ones
here on earth
await embracing you again.
Wendie Jeanne Deacon©
Grief is instrumental to the metamorphous of person, as a whole. So many things change in your life when you lose some one you love. Although no loss is an easy one, as personally I have lost my father, stepmother and grandparents. Sadly as heart wrenching as their deaths were there is no comparison to how my life has changed with the loss of Morgan. There is no possible way to describe what this life altering event does to you, or prepare you for the process it takes to find a new normal, especially when the process is as individual as the experience it self. This is why i continue to share this undertaking, for understanding on every level. For myself to reflect on, for those who are in a similar predicament, as well as people who simply wish to understand more.
In my journey over the last 17 months or 5 days shy of 17 months I have found that the one place i feel somewhat normal is when i am with others like me. This could be in a virtual support group, or a friendship, or honestly a stranger with a similar story. It is so hard to feel like an oddity or only feel “Normal” whatever that is, when you are among other s that belong to this club which no body wants to be a member of. You only feel a like you are not abnormal because others for similar reasons now live with broken hope of what their dreams once were, because their world was as well obliterated. I suppose to feel comfort and normalcy when you are with those who are just as fragmented is conventional in many facets. Its just so hypocritical, you do not wish anyone else to ever live in the hell you are in, you do not want anyone to have felt this pain,but yet you gravitate to those that do because they get it.
I can say that I am learning to process the fact that nothing will every be the same, it will always hurt, it will never completely heal. I am finding that i have been able to laugh a little more than months ago, I cry a little less and slowly am learning to move back into trying to be functionally productive. This is not saying I am any better than I was during the early months, it is just saying that I am adjusting to function with the pain. I still feel like I am in quick sand and still seems like a lot of the time the fight to get out is not worth the emotional and physical exhaustion. On those days, I generally drop back five and punt, maybe just try to stay under the covers until i feel strong enough to fight a bit more, whatever it takes.
I do grasp a lot more now, the proverbial light bulb has gone off, i am always going to be broken! I will never be whole, kind of like a puzzle missing a piece or I suppose like a tea cup that the handle breaks off and is glued back together, its weaker and never the same, but can function. So at this point in this wicked game this is where i am and quite honestly it is what it is! I have learned that at any given day in the process of grief, the battles you fight change from moment to moment. In the beginning i guess you are going through the traditional stages if you will. As time goes on and you graduate into new challenges, you find that the things that hurt now are things you could not have fathomed when it first happened. When you bury your child the pain and shock are so intense that no one could have possibly prepare you for! So as time goes you learn to progress through those stages, and you may find that in some ways you come to terms with the fact that your baby is gone and not coming back. Than you at some point you start to climb out of the rabbit hole to see that the world and life as you knew it, now has a completely contrasting view with incompatible meaning. You now identify with different goals, hopes and dreams, because the ones you had before are now a mirage. The depth of these goals , hopes, and dreams, may be as little as getting out of bed and making your bed one day or as extreme changing a career. The metamorphous of grief reprograms you to keep the focus of the obtainable idea that you are only in need do the best that you can at a single moment, nothing more nothing less as well as embrace the idea of your new normal to be as being perfectly imperfect!
I received this email from the Avaaz Community. It is important enough to repost. Please sign in on the site and sign the petition.
|It’s horrific! A Maldives court just sentenced a 15-year-old rape survivor to 100 whip lashings. By threatening Maldives politicians’ precious tourist income we can save this child and stop these outrageous public floggings. Let’s quickly build a one million strong call, then place ads in travel magazines and websites:|
It’s hard to believe, but a 15-year-old rape survivor has been sentenced to be whipped 100 times in public! Let’s put an end to this lunacy by hitting the Maldives government where it hurts: the tourism industry.
The girl’s stepfather is accused of raping her for years and murdering the baby she bore.Now the court says she must be flogged for “sex outside marriage” with another man, who has not even been named! President Waheed of the Maldives is already feeling global pressure on this, and we can force him to save this girl and change the law to spare other victims this cruel fate. This is how we can end the War on Women – by standing up every time an outrage like this happens.
Tourism is the big earner for the Maldives elite, including government ministers. Let’s build a million-strong petition to President Waheed this week, then threaten the islands’ reputation through hard-hitting ads in travel magazines and online until he steps in to save her and abolish this outrageous law. Sign and forward this email now:
The Maldives is a paradise for tourists. But it’s not always so for the women that live there. There are countries that have even harsher interpretations of Islamic sharia law, but in the Maldives women and children can be publically whipped if found guilty of extramarital sex or adultery. Pre marital ‘fornication’ is illegal, but despite always involving a man and a woman, 90% of the people punished are women! And while a staggering one in three women between ages 15 and 49 have suffered physical or sexual abuse — zero rapists were convicted in the past three years.
Winning this battle can help women everywhere, as the Maldives government is right now running for a top UN human rights position – on a platform of women’s rights! The Maldives is on its own journey to build democracy and wants be a ‘model Islamic democracy’. The President has asked the Attorney-General to appeal the sentence in the 15-year-old’s case. But that’s not enough. Extremists inside the country will force him to abandon further reforms if international attention fades. Let’s tell the Maldives that it stands to lose its reputation as a romantic tourist hot spot unless it moves quickly to uphold universal human and women’s rights.
If enough of us raise our voices, we can get President Waheed and MPs to face down the extremists. The president has already been pushed to act by this shameful, tragic story – let’s seize this moment to prevent more horrifying injustices against girls and women. Sign the petition, then send this email widely:
When certain extreme cases spark the global public conscience it is crucial to speak out whether it is the US, India or the Maldives. Avaaz members have fought many battles in the global war on women. In Afghanistan, we helped protect a young woman who bravely spoke out about her horrific rape; in Honduras, we fought alongside local women against a law that would jail women using the morning-after pill. Now it’s time to stand with the women of the Maldives.
With hope and determination,
Jeremy, Mary, Nick, Alex, Ricken, Laura, Michelle and the whole Avaaz team
Maldives girl to get 100 lashes for pre-marital sex (BBC)
Maldives government to appeal flogging of rape victim (Dawn, Pakistan)
Rape victims punished, failed by Maldives justice system (Minivan news, Maldives)
Judicial statistics show 90 percent of those convicted for fornication are female (Minivan news, Maldives)
Day 22 has finally arrived. Day 21 dragged on and on… I waded through a haze of misery today. Jared had an horrible day. I could see he had cried.
Jon-Daniel has a friend sleeping over. He is a young boy of 14 who lost his dad to a drug overdose a year ago. I asked whether he had been for counselling. He said he had but that it had not really helped.
“I had to get over it by myself” this old soul said.
“The shrink kept telling me I must forgive my dad. I hated my father for using drugs. So I stopped going. He wasn’t listening to me so there was no point…”
I have to travel to an exhibition in the UAE from the 16th – 21st of February. Upon my return the boys and I will go and see the Hospice psychiatrist again. I think we would have worked through enough grief to be able to cope with this part of our journey.
Children are so fragile. On the surface they appear to be coping yet the pain lies shallow…
Last night Jon-Daniel cried. Today Jared battled to breathe.
She used to worry so about me surviving her death. Our domestic helper has worked for me for the past 18 years. Bettie is part of the family. Over the years we have shared tears for our children…
Bettie went on her annual leave on the 18th of December 2012. She tells me that Vic asked her to keep an eye on me, after her passing, as she would not see Bettie again…
Vic knew she was dying. I knew she was dying. I prayed for her to die! Why is it so hard now. I want to scream my anger and pain…I want to lash out at someone and just punch them…
Bettie returned just in time for Vic’s memorial service.
|My Mom is a Survivor
My mom is a survivor,
or so I’ve heard it said.
But I can hear her crying
when all others are in bed.
I watch her lay awake at night.
and go to hold her hand.
She doesn’t know I’m with her
to help her understand.
But like the sands upon a beach
that never wash away…
I watch over my surviving mom
who thinks of me each day.
She wears a smile for others,
a smile of disguise.
But through Heaven’s open door,
I see tears flowing from her eyes.
My mom tries to cope with my death,
to keep my memory alive.
But anyone who knows her
knows it’s her way to survive.
As I watch over my surviving mom
through Heaven’s open door…
I try to tell her that
Angel protect me forevermore.
I know that doesn’t help her,
or ease the burdens she bears.
So if you get a chance, call to her
And show her that you care.
For no matter what she feels,
my surviving mom has a broken heart
that time won’t ever heal.
A dear blogger friend of mine, Judy Unger, http://myjourneysinsight.com/ has generously mailed me a parcel with some of her songs. She also wrote me a very touching email and appended a beautiful song sung by her. The song, SET YOU FREE, http://judyunger.files.wordpress.com/2010/10/set-you-free-9_26_12-copyright-2012-by-judy-unger.mp3 was written by Judy when she faced losing her father and is hauntingly beautiful!SET YOU FREE You’re hanging on as night turns to dawn I know you can’t stay and soon you’ll be gone we both know it’s hard to let go; wherever you are my love won’t be far your smile, your touch, your voice, your face; your essence I will never replace though I long for you to hold me; I need to set you free There is no fear and your leaving is clear we’ll still have our love it remains with each tear I cry as you leave but I truly believe; as you leave my sight we’ll both be all right your smile, your touch, your voice, your face; your essence I will never replace though I long for you to hold me; I need to set you free though you have flown to somewhere unknown we’re never apart ‘cause you’re here in my heart your smile, your touch, your voice, your face; your essence I will never replace though I long for you to hold me; I need to set you free though I long for you to hold me; I need to set you free
Vic is not having a good day. She is so brave, but it is clear to all that she is slowly losing the battle.
The cellulitis in her arm is slowly clearing, the pain and nausea is under control but Vic is weaker. She looks old and drawn – the pain clearly etched on her little face. My heart physically aches when I look at her, and I know that my love will follow her, wherever she may go..
I know I must set Vic free. I need to release her from the hell she lives. I echo Judy’s words “You’re hanging on as night turns to dawn; I know you can’t stay and soon you’ll be gone; we both know it’s hard to let go; wherever you are my love won’t be far”
Thank you Judy for your compassion and sharing your beautiful songs with me.
Today was a great day!
Yesterday Hospice increased Vic’s pain medication by 25%. The subcutaneous driver is holding up in her arm. She has not vomited in the past 24 hours. Vic spent wonderful, constructive time with the boys today.
Yesterday Renée, Jared’s extra maths teacher and a friend, phoned to hear if I wanted to go for a walk. I declined as Vic was really not well. Then she phoned to ask if everything was okay. I said we were having a bad day. She had read the boys BBM status updates and asked if I wanted her to pop around and help… I declined. She phoned again and offered to cook us dinner… I said we had already prepared a meal. Renée said “I will bring you dinner tomorrow night”….
My BFF, Gillian, is visiting. It is so comforting having her around. I felt enfolded by the normal-ness of her life today …She is a warm and comforting person who knows my soul as well as I know my own soul. In the words of the great Aristotle: “Friendship is composed of a single soul inhibiting two bodies.” Gill is a safe haven. I love the no-nonsense way she speaks, her efficiency, her single-minded loyalty and ability to love. Gillian’s greatest character trait is that she loves unconditionally and NEVER judges.
Gillian is a second mom to Vic.
When our children were growing up we were inseparable. Gill is a delicate, tough person but cannot handle blood. I am a tough career girl but cannot handle needles being shoved into my child’s little body. As young mommy’s I did the blood thing and Gillian did the dentist and invasive tests thing. She would give the kids a quarter of a Panado and a sermon about bravery and march them off to the dentist, x-rays etc…. I cleaned wounds and stuck plaster over wounds…We are the perfect team. United against our children….
When the boys got mumps Vic got mumps, when the boys got chicken pox Vic got chickenpox… Vic had her own bedroom in Gillian’s home.
I cried when her eldest, Darren, went to school the first time. His little knees were so skinny and looked like matchsticks in his school pants.
Gillian used to relieve me when Vic was in hospital and Len (her husband) would take me for tea and anchovy toast. Gillian is the first person I phone when I have a Vicky crisis.
After my divorce from Vic’s dad Len and Gill once drove to my new apartment at 2am and took turns in consoling me. The other sat in the car with the two boys sleeping on the back seat! In my single days I would go to Gillian for a cooked meal with vegetables…I never cooked! The night before I remarried I spent the night with Len and Gill. We laughed and joked and ate toast… Gillian dressed Vic and got her to church…
Gill is one of the most amazing people I know. She is a friend in a million.
My friend is now semi-retired. She lives in a beautiful game reserve in the most beautiful part of our country. Her home is warm and welcoming – a safe haven to a myriad of friends and family. Gill chats to the boys on BBM and is always 100% up to date on what is happening in their lives. When I travel Gill will check on Vic every single day!
Yesterday the panic was sitting in my throat. I felt as if I was choking. Today Vic is great and Gillian is visiting. I am calm and at peace.
Tonight Renée dropped off the greatest lasagna and a chocolate pudding. I am in total awe of the love that we have been surrounded by and absolutely amazed at the kindness that Renée had shown….. We live in Johannesburg – a concrete jungle! I am so deeply touched!
So, tonight as my little girl finally settled into a deep and pain-free sleep I allowed myself the luxury of a couple of tears. Tears of gratitude for the love we are surrounded by! Tears of gratitude that the pain medication is working! Tears of gratitude for a good day!
I know that the pain medication will only work for a week or two and then it will have to be increased again. At what stage will Vic’s body not be able to handle the pain medication any longer?
But tonight I am not going to dwell on my questions.
Just tonight I will indulge in an early night.
The friend in my adversity I shall always cherish most. I can better trust those who helped to relieve the gloom of my dark hours than those who are so ready to enjoy with me the sunshine of my prosperity. – Ulysses S. Grant
Dr Sue has been. The lung infection has cleared and Vic’s saturation is back up to 98%! What a little trooper she is!
She is however in Stage 4 renal and liver failure.
|Stage of Chronic Kidney Disease||eGFR ml/min/1.73 m|
|Stage 1: the eGFR shows normal kidney function but you are already known to have some kidney damage or disease. For example, you may have some protein or blood in your urine, an abnormality of your kidney, kidney inflammation, etc.||90 or more|
|Stage 2: mildly reduced kidney function AND you are already known to have some kidney damage or disease. People with an eGFR of 60-89 without any known kidney damage or disease are not considered to have chronic kidney disease (CKD).||60 to 89|
|Stage 3: moderately reduced kidney function. (With or without a known kidney disease. For example, an elderly person with ageing kidneys may have reduced kidney function without a specific known kidney disease.)||45 to 59 (3A)
30 to 44 (3B)
|Stage 4: severely reduced kidney function. (With or without known kidney disease.)||15 to 29|
|Stage 5: very severely reduced kidney function. This is sometimes called end-stage kidney failure or established renal failure.||Less than 15|
Only last week Vic complained to one of her siblings that she is battling with hiccups. We laughed about it and reminded her of the old wives tale that if you steal you will get hiccups… We wanted to know what she had stolen… If any person in the world told me then that hiccups is a symptom of kidney failure I would of thought they were taking the Micky out of me!
- Nausea CHECK
- Vomiting CHECK
- Loss of appetite CHECK
- Fatigue and weakness CHECK
- Sleep problems CHECK
- Changes in urine output CHECK
- Decreased mental sharpness CHECK
- Muscle twitches and cramps CHECK
- Hiccups CHECK
- Swelling of the feet and ankles CHECK
- Persistent itching CHECK
- Chest pain, if fluid accumulates around the lining of the heart CHECK
- Shortness of breath, if fluid accumulates in the lungs CHECK
- High blood pressure (hypertension) that’s difficult to control NEGATIVE
Signs and symptoms of kidney failure are often nonspecific, meaning they can also be caused by other illnesses. In addition, because your kidneys are highly adaptable and able to compensate for lost function, signs and symptoms of kidney failure may not appear until irreversible damage has occurred.
- Fluid retention, which could lead to swelling in your arms and legs, high blood pressure, or fluid in your lungs (pulmonary edema)
- A sudden rise in potassium levels in your blood (hyperkalemia), which could impair your heart’s ability to function and may be life-threatening
- Heart and blood vessel disease (cardiovascular disease)
- Weak bones and an increased risk of bone fractures
- Damage to your central nervous system, which can cause difficulty concentrating, personality changes or seizures
- Decreased immune response, which makes you more vulnerable to infection
- Pericarditis, an inflammation of the sac-like membrane that envelops your heart (pericardium)
- Irreversible damage to your kidneys (end-stage kidney disease), eventually requiring either dialysis or a kidney transplant for survival
Depending on the underlying cause, some types of chronic kidney failure can be treated. Often, though, chronic kidney failure has no cure. Treatment consists of measures to help control signs and symptoms of chronic kidney failure, reduce complications, and slow the progress of the disease. If your kidneys become severely damaged, you may need treatments for end-stage kidney disease.
Your doctor will work to slow or control the disease or condition that’s causing your kidney failure. Treatment options vary, depending on the cause. But kidney damage can continue to worsen even when an underlying condition, such as high blood pressure, has been controlled.
- High blood pressure medications. High blood pressure medications can initially decrease kidney function and change electrolyte levels, so you may have frequent blood tests to monitor your condition. Your doctor will likely also recommend a low-salt diet. Not possible. Vic has low sodium levels.
- Medications to lower cholesterol levels. Your doctor may recommend medications, called statins, to lower your cholesterol. People with chronic kidney failure often experience high levels of bad cholesterol, which can increase the risk of heart disease. We are not going to stick another unneccesary needle into this poor child. If she has high cholestrol so be it!
- Medications to relieve anemia. In certain situations, your doctor may recommend supplements of the hormone erythropoietin (uh-rith-row-POY-uh-tin), sometimes with added iron. Erythropoietin supplements can induce production of more red blood cells, which may relieve fatigue and weakness associated with anemia. Done
- Medications to relieve swelling. People with chronic kidney failure may retain fluids. This can lead to swelling in the arms and legs, aswell as high blood pressure. Medications called diuretics can help maintain the balance of fluids in your body. Done
- Medications to protect your bones. Your doctor may prescribe calcium and vitamin D supplements to prevent weak bones and lower your risk of fracture. You may also take medication to lower the amount of phosphate in your blood, which increases the amount of calcium available for your bones. Not possible – Vic has Osteogenesis Imperfecta
- A lower protein diet to minimize waste products in your blood.As your body processes protein from foods, it creates waste products that your kidneys must filter from your blood. To reduce the amount of work your kidneys must do, your doctor may recommend eating less protein. Your doctor may also ask you to meet with a dietitian who can suggest ways to lower your protein intake while still eating a healthy diet. Vic is on a soft diet
CONCLUSION: Vic’s kidney failure is irreversible. There are no drugs to reverse the process. The question can only be whether Vic will go onto dialysis…. The decision will be her’s to make.
Last night was a better night. The additional anti-nausea injections are working. I hope the antibiotics are working.
Hospice measured Vic’s SP02 levels today and it is between 84 and 88%. I don’t think that is a good sign. Lani, second eldest stepdaughter, phoned me last night and told me that she had chronic ill patients whose SP02 levels were as low as 70%. Lani is a physiotherapist. I felt better after our chat.
Vic is extremely tired. She went out for coffee with her best friend, who, very recently, was diagnosed with breast cancer. Vic is a compassionate and caring person and wanted to support her friend emotionally! When she got home she had a lie down – for the rest of the day.
Tonight I helped her bath and wash her hair. Poor poppet, she is so exhausted after her bath that she had to lie down and is taking a nap again. Her hair is still damp but we will dry it later. I hope she has a better night but I am not very optimistic.
Whilst I was rinsing Vic’s hair she said “Mommy what do people do that don’t have a family like mine”
“Oh sweetie, it must be very hard for them…”
“Sometimes I feel guilty because I take up so much time, money and attention from you. I have taken up your entire life…” Vic said
“But sweetie, we love you! What do you want us to do less for you to feel better? Tell me and we will do it!”
We both laughed and the moment was over…
A while back I made a decision. We do not have our own Hospice in our suburb. We fall under the auspices of the Houghton (Johannesburg) and are literally the orphans of the system. I am going to start a Hospice in Alberton.
This Hospice will focus on palliative care and will bring purpose to Vic’s suffering. It will be a monument of her suffering and her compassionate nature.