Tag: Hospice
Vic succeeded at life…
Vic often said “I must be such a disappointment to you. I have done nothing with my life!”
This morning I read these beautiful words and so wished I could have shared it with Vic.
“This is to have succeeded” posted on June 4, 2013 by Dr Bill http://drbillwooten.com/2013/06/04/this-is-to-have-succeeded
“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson Stanley
To laugh often and love much – That Vic did. She always had a smile on her precious face. Even when she was in dreadful pain she would try to smile. When she was in a lot of pain her laugh was shrill. Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.
“That is terrible Mommy. Why?”
I felt like hitting my head against a wall! What did the child think? In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag. It was too big and positioned very low down.
“I worry about you every second of the day baby. I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything… I worry about your wound. I worry about your pain control….”
“Mommy, that is so sad. At least once a week the boys and I laugh so much that my tummy hurts from it…”
Vic in 2007
Vic loved unconditionally and with every fibre of her body. She gave everything! She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys. She LIVED love.
Her last words ever were “I love you Mommy”
… to win the respect of intelligent persons and the affection of children; Worldwide, intelligent people, respected and admired Vic for her courage, tenacity… We called Vic the “baby whisperer”. Children loved her. She loved children. Her only ambition as a toddler and teenager was to be a Mommy. She loved her sons beyond comprehension…
Vic and her boys.
The Baby Whisperer
…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life. People got tired of waiting for her to die. “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable. False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.
….. to appreciate beauty; to find the best in others; My precious child was so naïve. She refused to see the bad in people! The only time she got irritated and miserable was in hospital. She always found the good in people. She did not speak badly of people. When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge. Vic taught me unconditional love, forgiveness and tolerance. Vic brought out the best in me and the most other people.
…..to give of one’s self; Vic was a people pleaser. She would turn down MY bed!!!! She made sacrifices for each and every person in her life. Even in death she worried about other dying people who were less privileged than she was. I promised her at 2 am on the 16th of November 2012, a mere 2 months and 2 days before she died, that I would start Stepping Stone Hospice! She kept talking to me about Stepping Stone until she lapsed into a coma. We started on the 1st of January 2013 and Vic died on the 18th of January. Our first patient. Our first death.
…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place. Her sons are monuments of the person she was; her dream of a Hospice has been realized.
Vic’s monuments…
……to have played and laughed with enthusiasm and sung with exultation; With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.
Vic loving World Cup 2010
……to know even one life has breathed easier because you have lived Vic’s legacy will live on through her sons and Stepping Stone Hospice. Long after I have died, people will continue to benefit from Vic’s dreams and goodness.
—this is to have succeeded.” My angel child – you succeeded! You succeeded in life and with living. You made the world a beautiful place filled with goodness and hope. I am so proud of you. You lived life to the full. You made a difference! You lived a greater and more successful life than most people. You have put the world to shame. You are my hero!
https://tersiaburger.com/2012/10/16/and-the-winner-is/
https://tersiaburger.com/2012/06/09/9-6-2012/
https://wordpress.com/post/36185300/3015/
http://www.anaesthesiauk.com/documents/ards.pdf
http://www.nejm.org/doi/pdf/10.1056/nejm200005043421806
Textbook death 13.1.2013
I am cautiously optimistic that we have managed to stop the bleeding ulcer and that the new medicine regime has the vomiting under control. Vic is still running a fever, her BP is dropping and her heart rate has stabilized in the 110’s. She appears to be more stable than she has been in a couple of weeks.
This morning, after I washed her and changed her pyjamas she said “Mommy, I would like to go to the supermarket today…”
“Cool, what do you want to buy?” I asked
“Tippex (correction liquid) for the boys and Stilpain and Syndol (Tablets)” she said.
“Okay….” I said
“But I think you will have to drive Mommy… I don’t think I should be driving!” Vic said
This incredible young woman just does not know how to die! Vic had a good breakfast this morning. Vic has not eaten since Christmas!
The boys are fleeing home. Jon-Daniel has spent the past day and a half at Esther and Leon’s. Jared went to his Dad’s. I wish I too could flee. For the first time in my life I have come to understand why families place their dying loved ones in hospital of in a Hospice In-Patient unit. The waiting is gruelling and heart wrenching. The rollercoaster of dying is horrific!
I previously researched the “length of dying”.
The Journey Begins: One to Three Months Prior to Death
As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.
#1: Ask For Forgiveness
#2: Offer ForgivenessTask
#3: Offer Heartfelt ThanksTask
#4: Offer Sentiments of Love
#5: Say Goodbye
The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.
One to Two Weeks Prior to Death
Mental Changes
This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.
The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.
Physical Changes
The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:
- The body temperature lowers by a degree or more.
- The blood pressure lowers.
- The pulse becomes irregular and may slow down or speed up.
- There is increased perspiration.
- Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
- Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
- Speaking decreases and eventually stops altogether.
Journey’s End: A Couple of Days to Hours Prior to Death
The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.
The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes”breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.
Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.
Eventually, breathing will cease altogether and the heart stops. Death has occurred. http://dying.about.com/od/thedyingprocess/a/process.htm
Vic has experienced severe delirium or rather terminal restlessness, which is apparently a fairly common symptom in many dying patients.
Some characteristics of delirium include:
- Impaired level of consciousness with a reduced awareness of the surrounding environment
- Impaired short-term memory and attention span
- Disorientation to time and place
- Delusions and/or hallucinations (believing and/or seeing things that are not real)
- Uncharacteristic speech – may be really loud or soft, very rapid or slow
- Fluctuating mood swings
- Sleep disturbances – insomnia or reversed sleep cycle
- Abnormal activity – body movements may be increase or decreased, very fast or slow
Terminal Restlessness
Terminal restlessness is a particularly distressing form of delirium that may occur in dying patients. It is characterized by anguish (spiritual, emotional, or physical),
restlessness, anxiety, agitation, and cognitive failure.
Terminal restlessness is so distressing because it has a direct negative impact on the dying process. We all want death to be a comfortable and peaceful experience, but if a patient is dying with terminal restlessness, her death can be anything but comfortable and peaceful. http://dying.about.com/od/symptommanagement/a/delirium.htm
Vic is on massive dosages of medication. She is peaceful now.
On Monday, the 14th, Jon-Daniel will receive his school colours for academic achievements. Vicky is determined to attend the ceremony. We will find a way of getting her to the school to witness this achievement. I believe it is the last goal she has.
So despite me saying that Vic does not know how to die she is actually having a textbook death…
“Promise me Mommy…..” 13.1.2013
It has been a long day. Vic is in a drug induced sleep. She looks so peaceful. Vic is not anesthetized – she wakes when she is thirsty or in pain. She has only urinated once in 24 hours. Her end is near.
Vic is looking angelically beautiful. Her skin is blemish free and almost transparent. Her hair seems to have taken on a life of its own. Her little hands look skeleton like. Her body is wasting away and yet she remains as beautiful as ever!
I will not sleep tonight. Many years ago I promised Vic that she would not die alone or in a hospital. The time is near and I must honour this promise.
Earlier tonight she woke up and I wasn’t in her room. She had a panic attack… Danie found her trying to walk down the passage. She was holding onto the wall and tears were running down her cheeks. “Mommy, I am scared…”
Something has started bleeding again. Vic vomited and there are signs of old and new blood again. “Look Mommy, my mouth is bleeding…” she said.
Vic is deadly pale and her body has involuntary “jerking” movements. She is decidedly unstable.
“Mommy, you have to get me to the awards evening. I don’t care how. Promise me Mommy!!!” She sobbed tonight. Tomorrow I will speak to the school and make the arrangements. It is not a wheelchair friendly school and Vic could never sit through a two-hour ceremony. We will find a way.
We had a strangely “normal” day today. Jared brought his gaming computer down from the study into my TV lounge. It is something I don’t encourage because there are wires and cords all over and I HATE the untidiness of it. Today I welcomed it. We needed to be close to one another. I swam twice and we ate spaghetti bolognaise.
The boys have fear in their eyes. I have fear in my heart.
Stepping Stone Hospice
This week I truly realised that the Stepping Stone Hospice patients are “our” people. Our friends. They are not strangers. They are people we know from church, they are our neighbours, our friends; friends of friends… Our Hospice cares for our own. We are not “removed” from the community.
We however continually grieve.
Stepping Stone Hospice is just so different. We are not a group of detached, paid staff doing a job. This is a Hospice driven by the tears of its members. It understands the fear in the hearts of its dying and its survivors. We see our loved ones
We have lost our fear of death. We have not become immune to the tears of our community and friends. We truly live and experience “Ubuntu” every day.
A little old lady has shuffled into our offices with R150.00 ($15.00). She told us that when the interest rate went up she would be in a position to increase her monthly contribution to our “worthy cause”. How amazing would it be if everyone in our community contributed $15.00 a month?
I love spending time in our building. I feel close to Vic.
Our Hospice journey is a healing journey. We have been helped over the stepping stones…now it is our turn to take the hand of another and help them over the stepping stones. What an amazing privilege. All built upon our own tears and the deaths of our loved ones.
Together We Walk the Stepping Stones
by Barb Williams
Come, take my hand, the road is long.
We must travel by stepping stones.
No, you’re not alone. I’ve been there.
Don’t fear the darkness. I’ll be with you.
We must take one step at a time.
But remember, we may have to stop awhile.
It’s a long way to the other side
And there are many obstacles.
We have many stones to cross.
Some are bigger than others.
Shock, denial, and anger to start.
Then comes guilt, despair, and loneliness.
It’s a hard road to travel, but it must be done.
It’s the only way to reach the other side.
Come, slip your hand in mind.
What? Oh, yes, it’s strong.
I’ve held so many hands like yours.
Yes, mine was once small and weak like yours.
Once, you see, I had to take someone’s hand
In order to take the first step.
Oops! You’ve stumbled. Go ahead and cry.
Don’t be ashamed. I understand.
Let’s wait here awhile so that you can get your breath.
When you’re stronger, we’ll go on, one step at a time.
There’s no need to hurry.
Say, it’s nice to hear you laugh.
Yes, I agree, the memories you shared are good.
Look, we’re halfway there now.
I can see the other side.
It looks so warm and sunny.
On, have you noticed? We’re nearing the last stone
And you’re standing alone.
And look, your hand, you’ve let go of mine.
We’ve reached the other side.
But wait, look back, someone is standing there.
They are alone and want to cross the stepping stones.
I’d better go. They need my help.
What? Are you sure?
Why, yes, go ahead. I’ll wait.
You know the way.
You’ve been there.
Yes, I agree. It’s your turn, my friend . . .
To help someone else cross the stepping stones.
Deathbed promises kept and broken
During the month of August I again stood next to a deathbed. It was next to the deathbed of one of our patients.
I was touched by the absolute outpouring of love from the family to the patient. I have seen it at almost every single deathbed I have stood next to…. The second death I ever witnessed was weeks before my mother-in-law died. My Mother-in-Law was in a hospital. The lady opposite her was dying and moved into a dying-room. I was allowed to sit with her. I prayed for her and tried to comfort her. I spoke to her almost non-stop for 11 hours. In the evening her husband came to visit. He was not told that his wife was dying by the hospital staff…
“What is wrong with my wife?” he asked
“She is very ill” I said
“When will she come home?” she asked.
“You must speak to the staff” I said
“They say nothing” he said
“Your wife is dying… I am so sorry.”
I know it was not my place to tell this poor man that his wife was dying. But, if I hadn’t he would have had to live with the fact that hours after visiting hours were over, she died… He got to say goodbye.
I sat with the woman until she died. She was petrified of death. I could see that they were indigent people. Poorer than poor.
She knew she was dying. She was desperately trying to stay alive. Trying to console and calm her I asked her whether she was scared. She nodded. I asked her whether she was worried about something. Again she nodded. I asked her whether she was worried about her children. She again nodded.
In the heat of the moment I promised her I would help her husband look after her children… I made a deathbed promise.
The next day I tried to get her family’s contact details from the hospital. They refused to give it to me.
I have had to live with the fact that I promised a dying woman that I would take care of her children and that I broke that promise.
Extravagant promises to dying loved ones often pose an ethical conflict, defined as when opposing acts each fulfil an ethical value, but neither can achieve both. The situation also arises when one is tempted to lie to dying friends and loved ones out of kindness. A mother and daughter are involved in a fatal car accident; the daughter is dead, the mother is dying. “Is our daughter all right?” the fading mother asks her husband.
In such a case, it is reasonable and ethical to conclude that the kind answer, “Yes,” is more ethical than the truthful answer, “No.” A promise to a dying loved one may be an exception to the usual rule that it is unethical to make a promise one cannot or will not fulfil.
Often ridiculous and selfish promises are coerced from the loved ones standing next to a death bed. When we stand there we promise freely…we want to give the dying person that final peace of mind.
A classic example of a deathbed promise made in good faith is depicted in the black comedy “Where’s Poppa?” In this movie, the son promises his father, he would never place his senile mother in a home… At the time it was a reasonable promise but becomes increasingly more difficult to keep as the mother becomes more demented and senile. The vicious woman destroys every aspect of his life….
“Promises openly and freely made on the initiative of a dying individual’s loved one are true commitments. Promises coerced by a dying friend or relative and made out of kindness or guilt, on the other hand, should be re-evaluated at a less emotion-charged time. Both varieties of death-bed promises, however, create ethical obligations. They just can’t be as strong as the obligations created by promises to the living.”
I have stuck to every promise I made Vic. Many of the promises were heartbreakingly difficult to keep. Others were easy.
On Wednesday the 9th of October 2013 we had the official opening of Stepping Stone Hospice’s building.
It is one promise I was able to keep.
The shadow of grief
Grief becomes a shadow. It finds you and follows you. At times the shadow is small and then at times it is big.
Your shadow is a constant companion. It keeps up with your pace… It will run with you but it will also crawl with you. When you stop it will stop.
It follows you into the valleys of despair and will climb mountains of triumph with you. Grief is a constant companion.
When you are in the deepest valley your shadow is there. When at the heights of the highest mountain it is still there.
A shadow is a dangerous thing. If offers a wonderful hiding place. A place to lose one self. At times the shadow invites me in and I get lost in my shadow of grief. In the shadow I am invisible and no one can see my pain, my sense of loss, my loneliness. My shadow is a safe haven where I get to become one with my grief.
The boys are a light that draws me out from my shadow. Hospice and my faith is a light that draws me out from my shadow.
The grief of losing a child is not only on high days and holidays. Grief follows you on bad days, good days, every day… It gets into bed with you and awakens with you.
It even permeates your dreams.
Today it is 8 months since Vic died. Not a single day has passed that I have not been acutely aware of the shadow of grief that accompanies me on my journey. Has it become a journey of recovery? No, I doubt it. I think it is too soon. I do have better days…Then I have days where I walk into a supermarket and see Vic’s brand of deodorant or shampoo. I will put out my hand to touch a @$*# tin of deodorant and tears will well up in my eyes.
For heaven’s sake! A stupid tin of deodorant now has the ability to reduce me to tears!
Today I stood outside the Hospice building. It is nearing completion. I experienced a profound sense of achievement. Pride and satisfaction welled up in my heart but disappeared into that massive, gaping hole left by Vic’s death.
“This is because my child died” it rushed through my brain….
Of course someone would have started a Hospice. That I don’t doubt for one second. Maybe the rest of the team would have been involved. Maybe the financial backing would have been better – who knows? The fact remains that the reason I got involved is because my child died and I promised her that her death would not be futile.
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.
200 days
Today we lit candles in remembrance of Vic dying 200 days ago. My mind keeps crying “No! It is not true!” The void in my heart and life shrieks “Yes, it is!”
I met with a new Hospice patient today. She is in her early 60’s, petite, bright, friendly, positive and so unbelievably brave! She is also in denial and dying.
“I believe I will wake up one morning and I will be healed!” she said
Her skin has discoloured from the chemo, her eyes are turmeric yellow and her belly is very extended. Her feet and legs are dreadfully swollen. I believe that she is close to death. Yet this incredible woman is determined to go to the office from the 12th of August until the 27th of August as her replacement is on leave then…. I doubt that she will live that long!
I sat there and it was déjà vu… It was as if I was listening to Vic planning next week, next month and next year…. I heard her husband encouraging her to write letters, finalising her will. I shared with them how Vic had labeled every piece of her jewellery, given strict instructions on what had to happen to her possessions, planned her own funeral…
“Am I correct when I say that I hear you saying your child died?” the patient asked.
“Yes” I said. “200 days ago today”
“I cannot believe that you can talk about your child’s death! You are smiling and look so normal” she said. “When our son died we could not talk about it. We cried all the time…”
“Death is not the enemy. I prayed for my child to die…” I said.
“It is okay to cry” they said
“I cry every day” I said
I am alive
I am having a wonderful visit in England with my UK grandchildren and kids. The house is filled with the patter of little feet and shrieks of laughter and despair. Toys lie scattered on the floor and little arms and legs curl around their Oumie. It is a happy home, and I am fresh meat…
“Oumie, please can we jump on the trampoline?”
I have spent two days jumping on a trampoline…Thank God it rained today!!!
I have been consumed with the feeling of “life” in the household. Life, joy, movement…easy laughter and sibling rivalry. Everything that poor Vic never really experienced.
How desperately she wanted to live. How desperately she craved a normal life. How desperately she craved to LIVE! How desperately we wanted her to live.
We never have enough time. We always want more. Vic wanted more time. On the 24th of September, last year, when the Hospice doctor came in for Vic’s evaluation, Vic said “I thought I had more time…” https://tersiaburger.com/2012/09/24/mommy-i-thought-i-had-more-time/
Six days before her death she cried and said she wanted to live. “If only I could live for another year…”
“How little we know of what there is to know. I wish that I were going to live a long time instead of going to die today because I have learned much about life in these four days; more, I think than in all other time. I’d like to be an old man to really know. I wonder if you keep on learning or if there is only a certain amount each man can understand. I thought I knew so many things that I know nothing of. I wish there was more time.” –Ernest Hemingway.
I am wordless.
I know that I am still numb.
I am sad.
I am happy.
I am alive.
I wish I wasn’t…
I don’t want to ever leave my loved ones – as my child did not want to…..
Life is so unfair!!!!
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.
Mommy’s dream is coming true…
Jon-Daniel’s BBM status today was “Mommy’s dream coming true” with this photo…
Your dream is coming true my angel child. Your Stepping Stone Hospice is functioning, and we have received a building as a donation! Next week construction will start and by the end of the month we will move in!
Behind the building there is a duck pond and a quaint little chapel. I look forward to planting some roses in the garden! We anticipate wheeling our day-care patients into the garden so they can feed the ducks.
Of course we do not have furniture yet. The boys are donating the furniture for the two Dignity Rooms (dying rooms). It was their decision! We want to real make the rooms pretty and lively… We will play gentle music and burn candles like we did for you… It will truly be rooms of love…
Yesterday I was at the site and I was looking at the terrain that they were clearing. All of a sudden there was this perfect white feather…Another message from you Angel. Thank you. I needed a sign…
Stepping Stone Hospice is daunting. This week an article appeared in the Tames Times. It opened a floodgate of telephone calls… An elderly man called. His voice was raw with grief and despair. His wife is dying from liver cancer and he is going through all those familiar caregiver anguish. How will he know when it is time? But she is still working and in total denial…He did not want help and will put my number on speed dial… I experienced what Arlene must have experienced when I phoned her the first time…. Quite a few new patients this week…so much pain and fear…
We have had wonderful offers of help. A woman phoned today and said that she did not know how to care for a sick person, but she was prepared to go clean a sick person’s home… We have had offers of help from professional councillors, people from all wards of life…Now we can only hope and pray that people will volunteer furniture and make some financial contributions!
I am amazed at the goodness and generosity of people. The company that donated the building belongs to a young man, Jaco Schultz. You would have liked him my angel. He is really a nice young man with a “white heart”.
I can hear you asking “Where did you find him Mommy?”
I did not find him. He found us! Long story…here is the short version!
We sell second-hand clothing to raise funds… El-Marie, Jaco’s sister took 14 bags of clothing to Trix. Trix (a wonderful woman with a superb sense of humour and a passion for Stepping Stone Hospice) told her what we do with the proceeds of the clothes (we buy medication for the indigent patients). Two weeks later she dropped off more bags and asked whether we could meet her brother…
The meeting itself was quite funny. It was when I had that terrible flu. The morning of the meeting I hardly had a voice, my head was throbbing and I was certain I would die. Remember the woman you met, who lives around the corner from us and whose daughter-in-law was paralysed in an accident in December 2012? She was at the meeting. I was so scared I would spread my flu germs, and she would contract my flu, that I wore a facemask – I did not want DiL’s death on my conscience. It must have looked so funny! Me with this horrible surgical facemask… gasping for oxygen and only breathing in concentrated germs!
Jaco asked to see the terrain, and we went on a walk-about. He asked whether a tree could be moved….We had a promise of a building that would have a small day-care centre, two dignity rooms, a treatment room…! As easy as that!
Within weeks the promise is becoming a reality. Construction starts next week! I am so excited! So my Angel Girl, there was a purpose to your suffering after all. I wish it was different but it isn’t. We have been blessed beyond comprehension.
I believe that God is personally overseeing this project.
Love and miss you with all my heart Sweetie.
https://tersiaburger.com/2012/11/16/we-both-laughed-and-the-moment-was-over/
https://tersiaburger.com/2012/12/02/where-to-now/
https://tersiaburger.com/2013/02/13/the-process-of-preparing-for-death/
https://tersiaburger.com/2012/10/15/remission-15-10-2012/
https://tersiaburger.com/2013/05/27/hospice-patients-live-longer/
https://tersiaburger.com/2013/04/24/stepping-stone-hospice/
https://tersiaburger.com/2013/01/03/tomorrow-may-be-better-than-yesterday/
“This is to have succeeded”
Vic often said “I must be such a disappointment to you. I have done nothing with my life!”
This morning I read these beautiful words and so wished I could have shared it with Vic.
“This is to have succeeded” posted on June 4, 2013 by Dr Bill http://drbillwooten.com/2013/06/04/this-is-to-have-succeeded
“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson StanleyTo laugh often and love much – That Vic did. She always had a smile on her precious face. Even when she was in dreadful pain she would try to smile. When she was in a lot of pain her laugh was shrill. Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.
“That is terrible Mommy. Why?”
I felt like hitting my head against a wall! What did the child think? In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag. It was too big and positioned very low down.
“I worry about you every second of the day baby. I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything… I worry about your wound. I worry about your pain control….”
“Mommy, that is so sad. At least once a week the boys and I laugh so much that my tummy hurts from it…”
Vic loved unconditionally and with every fibre of her body. She gave everything! She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys. She LIVED love.
Her last words ever were “I love you Mommy”
… to win the respect of intelligent persons and the affection of children; Worldwide, intelligent people, respect and admire Vic for her courage, tenacity… We called Vic the “baby whisperer”. Children loved her. She loved children. Her only ambition as a toddler and teenager was to be a Mommy. She loved her sons beyond comprehension…
…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life. People got tired of waiting for her to die. “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable. False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.
….. to appreciate beauty; to find the best in others; My precious child was so naïve. She refused to see the bad in people! The only time she got irritated and miserable was in hospital. She always found the good in people. She did not speak badly of people. When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge. Vic taught me unconditional love, forgiveness and tolerance. Vic brought out the best in me and the most other people.
…..to give of one’s self; Vic was a people pleaser. She would turn down MY bed!!!! She made sacrifices for each and every person in her life. Even in death she worried about other dying people who were less privileged than she was. I promised her 2 am one morning that I would start Stepping Stone Hospice! She kept talking to me about Stepping Stone until she lapsed into a coma.
…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place. Her sons are monuments of the person she was; her dream of a Hospice has been realized.
……to have played and laughed with enthusiasm and sung with exultation; With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.
……to know even one life has breathed easier because you have lived Vic’s legacy will live on through her sons and Stepping Stone Hospice. Long after I have died, people will continue to benefit from Vic’s dreams and goodness.
—this is to have succeeded.” My angel child – you succeeded! You succeeded in life and with living. You made the world a beautiful place filled with goodness and hope. I am so proud of you. You lived life to the full. You made a difference! You lived a greater and more successful life than most people. You have put the world to shame. You are my hero!
Hospice patients live longer
This post is all about pain and the myths and realities in hospice care
Palliative care usually starts too late. We see it on a daily basis at Stepping Stone Hospice… Most patients die within days of becoming patients. Doctors continue to treat the patients until days before their death. Referring a patient to Hospice means “conceding defeat”.
If patients were timorously referred to Hospice they would enjoy far greater quality of life than they do without. It is a total fallacy that Hospice patients die sooner than non-hospice patients.
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
Survival Periods
For the entire sample of all disease cohorts, the mean number of survival days was eight days longer for hospice patients than for non hospice patients (337 vs. 329 days, P ¼ 0.00079).
This difference includes the effects of many factors including demographics and sample sizes of the two cohorts. When we normalized these other factors, the difference in days increases to 29 days, as we show later in the regression. The survival period was significantly longer for the hospice cohort than for the non hospice cohort for the following diseases: CHF (402 vs. 321 days, P ¼ 0.0540), lung cancer (279 vs. 240 days, P < 0.0001), and pancreatic cancer (210 vs. 189 days, P ¼ 0.0102). The survival period was longer for the hospice cohort than non hospice cohort for colon cancer, and the difference approached but did not reach statistical significance (414 vs. 381 days, P ¼.0792). http://www.nhpco.org/sites/default/files/public/JPSM/march-2007-article.pdf
World Health Organization (WHO) definition of Palliative Care Palliative Care is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
I reposted this amazing article/post By Terre Mirsch on the myths surrounding Hospice
Unmanaged pain is one of the greatest fears of those facing serious illness and is the reason that many choose hospice care. Uncontrolled pain causes suffering and significantly impacts quality of life and total wellbeing. Pain may also lead to other problems including difficulty sleeping, fatigue, poor appetite, and a compromised immune system. Persistent pain can also lead to social isolation, depression, anger, and anxiety. Spiritually, one may begin to question the meaning of the pain and wonder “Why is God doing this to me?”
The good news is that living with advanced illness does not mean that one has to live with uncontrolled pain. The majority of time, pain can be controlled by relatively simple means using easy to administer medications. But caregivers often worry that they do not have the knowledge and skills, or the confidence to administer the proper medications or treatments prescribed for their loved ones.
Misconceptions about pain and commonly used medications may create barriers to controlling pain effectively. Understanding what pain is, how it can be effectively managed, and alleviating common misconceptions is the first step towards reducing these barriers.
Myth: “My loved one doesn’t look like he is in pain. That must mean that the pain is not that bad.”
Reality: In 1984, pain research expert, Margo McCafferty defined pain as “whatever the experiencing person says it is, existing whenever he says it does.” We cannot tell if a person is having pain by looking at them. Only the person having pain knows how it feels so it is important that we ask the person if they are having pain and how it feels and we need to listen to their answer.
Myth: “It is best to wait until the pain is severe before taking pain medications.”
Reality: It is best to stay ahead of the pain by taking medications around the clock when treating persistent pain. The longer pain goes untreated, the harder it is to ease. If the prescription says to take the medicine at certain times or at certain time intervals (for example, every four hours), make sure this is done.
Myth: “People who take strong narcotic pain medication become addicted.”
Reality: Opioid analgesics (also referred to as narcotics) are highly effective for many types of pain and can be given safely. Addiction is defined by a compulsive craving and use of a drug, which results in physical, psychological, and social harm to the user. Addiction is NOT a problem for people who take opioid medications for persistent uncontrolled pain.
Myth: “When people with chronic pain are treated with strong pain medications, they will have to take more and more medication as time goes by to get the same pain relief.”
Reality: Most patients take stable dosages of medication. Increases in medication dosage may result from worsening physical status. Sometimes tolerance develops and more medication is needed. It is important to understand that there is no highest dose for the amount of opioid medication that can be prescribed – there will always be something more that can be given to achieve comfort.
Myth: “The side effects of strong pain medications make people too sleepy.”
Reality: The goal of pain management is to achieve comfort while maintaining optimal alertness. Side effects of drowsiness will reduce or disappear within a few days. The most common side effect is constipation which can be controlled with a regular routine of medications aimed at keeping bowels regular.
Myth: “Once you start taking morphine, the end is always near.”
Reality: Morphine does not initiate the final phase of life or lead directly to death. Morphine provides relief of severe, chronic pain, promotes relaxation and comfort, and can also help to make breathing easier. Morphine does not lead to death. Morphine does not kill.
Good pain management improves quality of life and may even extend life. Palliative care and hospice professionals can provide you and your loved one with expert help that can help to manage the physical and emotional pain of life limiting illness. Caring for a loved one in pain can be difficult but with the right guidance and understanding, both you and your loved one can experience the comfort and support you deserve.
http://www.careconfidently.com/2012/05/14/all-about-pain-myths-and-realities-in-hospice-care/
I know that Hospice provided my child with life. I believe that Vic would have died months earlier if she had not been treated by Hospice. It is a basic human right to die with dignity. I am grateful that Vic had the privilege of dying with dignity.
Together We Walk the Stepping Stones – by Barb Williams
Stepping Stone Hospice is the name of the Hospice that we started as a tribute to Vic’s journey. It is the only thing that makes sense – why else would my child have suffered so long and hard?
I am busy with the website for Stepping Stone Hospice and accidentally came across this beautiful poem…I share it with you.
If any of you talented bloggers out there have appropriate poetry that we could publish on our website please send it to me. We will link it back to you.
The Menu will contain a Grieving and Bereavement Folder and I would like a “Poems of Love and Compassion” Section.
Please help.
Together We Walk the Stepping Stones – by Barb Williams
Come, take my hand, the road is long.
We must travel by stepping stones.
No, you’re not alone. I’ve been there.
Don’t fear the darkness. I’ll be with you.
We must take one step at a time.
But remember, we may have to stop awhile.
It’s a long way to the other side
And there are many obstacles.
We have many stones to cross.
Some are bigger than others.
Shock, denial, and anger to start.
Then comes guilt, despair, and loneliness.
It’s a hard road to travel, but it must be done.
It’s the only way to reach the other side.
Come, slip your hand in mind.
What? Oh, yes, it’s strong.
I’ve held so many hands like yours.
Yes, mine was once small and weak like yours.
Once, you see, I had to take someone’s hand
In order to take the first step.
Oops! You’ve stumbled. Go ahead and cry.
Don’t be ashamed. I understand.
Let’s wait here awhile so that you can get your breath.
When you’re stronger, we’ll go on, one step at a time.
There’s no need to hurry.
Say, it’s nice to hear you laugh.
Yes, I agree, the memories you shared are good.
Look, we’re halfway there now.
I can see the other side.
It looks so warm and sunny.
On, have you noticed? We’re nearing the last stone
And you’re standing alone.
And look, your hand, you’ve let go of mine.
We’ve reached the other side.
But wait, look back, someone is standing there.
They are alone and want to cross the stepping stones.
I’d better go. They need my help.
What? Are you sure?
Why, yes, go ahead. I’ll wait.
You know the way.
You’ve been there.
Yes, I agree. It’s your turn, my friend . . .
To help someone else cross the stepping stones.
Vic's Final Journey 