Tag: palliative care
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.
“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell
It is strange the number of Stepping Stone Hospice referrals we have received over the past two weeks. The patients have controlled pain and symptoms. Many caregivers are also looking for a dumping ground.
Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..
It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.
It is estimated that a maximum of 5% of people who die from terminal illnesses in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.
Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?
Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?
They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?
I read the post of an amazing woman who is suffering from congenital heart failure. She is in so much pain. I cried when I read her post. http://thedrsays.org/2012/11/08/ She replied to a question whether better pain control was possible….. “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”
I thank God that we are able to make a difference!
“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell
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.
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.
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/
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.
We were one
I had my first counselling session with the Hospice psychologist. It was terribly difficult and emotional.
So often when Vic and I chatted Vic would say “I am so worried about you Mommy…”
In November last year when Dr Sue, Vic’s palliative care physician, broke the news to Vic that her organs were failing Vic’s first words were “Oh Mommy, I am so worried about you – How will you cope?”
When our housekeeper went on leave late December, Vic said to her that they would not see one another again…that she was dying…. Vic asked our Betty to look after me because she was worried about me…
My standard answer to Vic was “I will be okay baby!”
Vic would say “I know, but I worry about you. Promise me you will see someone professional after I am gone?”
“I will be fine. I will be grateful that your suffering is over…But I promise I will!”
I did not know what I was talking about when I said I would be fine… Vic knew me better than I know myself. Nothing could have prepared me for the tsunami of grief that hit me, the void in my life…
So I walked into Alan’s office this morning. I noticed the strategically placed box of tissues, the crumpled ones in the little wastebasket next to the chair…I crossed my mind that he only deals with grief.
We spoke briefly about the boys, but Alan firmly said that today we would focus on me…
I bravely started talking without waiting to be prompted. After all, that is why I was there.
“I knew that I would miss Vic after her death but nothing could prepare me for this” I said
“Vic was diagnosed with Osteogenesis Imperfecta at 18 months. The doctors said she would not live to be older than 12 years.”.
I spoke clearly and succinctly about Vic’s medical history. It was familiar territory. I have share this information with many doctors, research centres, medical professionals… I spoke about Vic’s blotched back surgery and the devastating effect it had on the rest of her life. I ranted about Drs S + V. I articulated my hatred of them, my anger at their arrogance.
I spoke at length about how I fought doctors, tried to find solutions, cures… How I would not leave Vic’s side when she was in hospital or ICU. I told him about the ventilator been switched off and Vic starting to breathe on her own again…
I sobbed my way through Vic’s uncontrolled pain; the doctors telling her that she was a morphine addict…The doctors refusing her adequate pain control post-surgery because of her so-called morphine addiction…
I battled to tell him of Vic’s incredible will to live – sobs wracked through my body.
I share with him my guilt at being the one who administered her sedation at the end of her life. It took me a couple of minutes to get Vic’s final words of “Mommy, I love you…” out.
I saw Alan look at the clock on the wall. I knew our time was almost up.
He sat forward on his chair, his elbows on his knees. His voice and eyes were gentle with compassion.
“Tersia, it is normal to grieve. Vic has taken up all your time and energy for 38 years. You never separated from her. In your mind you were one…”
That is so true. That is why I feel as if part of me has died. Vic and I were so close. She always remained my baby girl. I never became Ma, Mom or anything but “Mommy”.
On the 9th of October 2012 I posted these words
https://tersiaburger.com/2012/10/09/is-there-pain-after-death-post-2/
As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind, but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you, but we will also be at peace… We will think of you and smile…
It is okay to let go my angel child.
Vic and I discussed this post… We cried then, and I cry now.
I pray that I will find peace.
Textbook death
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…
Daddy don’t leave me….
Tomorrow may be better than yesterday
Vic is rapidly deteriorating. Last night the nausea was absolutely relentless. With no food in her stomach Vic vomited blood. Old blood and new blood….. Her vitals are very unstable and I thought that she would not survive the night. I cried and slept in her bed with her.
Today Sr Siza tried to put up an IV drip. Vic has absolutely no veins left that are suitable for a drip. The sub-cutaneous driver is back up. At this stage of the game the risk of cellulitis is less than the need for pain and symptom control. We will reposition the subcutaneous driver as and when we need to.
Dr Sue has prescribed Cyklokapron. “Tranexamic acid (commonly marketed in tablet form as Lysteda and in IV form as Cyklokapron in the U.S. and Australia and asTransamin,Transcam in Asia, and Espercil in South America. Also marketed as TRAXYL (Nuvista Pharma) in Bangladesh,Cyclo-F and Femstrual in UK.) is a synthetic derivative of the amino acid lysine. It is used to treat or prevent excessive blood loss during surgery and in various other medical conditions. It is an antifibrinolytic that competitively inhibits the activation of plasminogen to plasmin, by binding to specific sites of both plasminogen and plasmin, a molecule responsible for the degradation of fibrin. Fibrin is a protein that forms the framework of blood clots. It has roughly eight times the antifibrinolytic activity of an older analogue, ε-aminocaproic acid.” http://en.wikipedia.org/wiki/Tranexamic_acid
She suggested that Vic be admitted to hospital. Vic refused.
On the 1st of January 2013 Stepping Stone Hospice and Palliative Care started operating. It is pretty ironic that Vic may well be our first death.
But then again, tomorrow may be better than yesterday….Today was better than last night.
The night was not over…
Early this morning I posted “My child is in a pain-free sleep. I will now try to sleep. “Tomorrow may be a rough day” https://tersiaburger.com/2012/12/07/tomorrow-may-be-a-rough-day/ not realising that the night was not over yet.
My poor child had a horrible night. The pain was under control, but her arm still throbbed, and she was restless. I was busy with some Christmas gifts. I tried to go to sleep, but gave it up as a bad job. So I wrote a post. At 2am this morning I had just “published” when Vic rang the intercom.
The intercom is her 911
I ran down the passage knowing that my poor child had vomited again. The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets. The food had not digested at all. She was shivering and crying.
I cleaned up whilst Vic showered.
“I am sorry Mommy. I am so sorry Mommy”… Vic sobbed.
“I can’t do this anymore Mommy. I don’t want to live like this anymore….”
I eventually got into bed at 5am. Three hours sleep used to be enough sleep when I was younger. I think I am getting old. I need more than 3 hours. Maybe it is time to look at a night nurse…..
Hospice called early this morning. The antibiotics have been changed to IM injections. We cannot put up an IV drip. Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained. Vic refused. “No more hospitals. Mommy you promised…”
Monday morning Dr Sue will come to the house and do the procedure here.
Yesterday I spoke with a wonderful young man, Marchelle. I was privileged to have worked with Marchelle worked for a couple of years. Unfortunately we lost a large contract and had to go our separate ways.
Marchelle has a pure heart. He is selfless and one of the very few people I trust with every fibre of my being. Marchelle has never let me down.
Marchelle told me he is following my blog. He asked me whether I thought the situation is truly as bad as Hospice say it is. I said I did.
He asked “what is different this time? You have been told so many times that Vic was dying, and then she bounces back…”
I started giving him the facts; Vic is in renal and hepatic failure… This time she cannot bounce back. Organ failure is organ failure…. Talking to him I thought “Marchelle is right! Why am I giving up this time? I have NEVER given up on my child, and I will not give up now.”
I walked into Vic’s room and stood in the door looking at my beautiful little girl sleeping. I am so tired that I am allowing the negativity of the situation to get to me. It was however only at 4:00 am that the reality of Vic’s situation re-settled around my heart like a lead jacket – I know my child has had enough.
Marchelle said he prays for us every day, and I believe him.
This morning Vic took her precious boys to pick up their report cards. Both Danie and I said we would take them. Vic very politely refused. She wanted to take her boys. She wanted to be first to see their marks. Maybe for the last time…
She was absolutely delighted with their marks. The boys had worked hard and deserve every mark they received. I wonder whether the boys will remember in the years to come that their Mommy got out of her sick- bed to go with them to collect their 2012 report cards.
We are so proud of them. They are brave kids.
On Sunday we will celebrate my birthday. On the 24th we will have our first Christmas dinner with Lani, Tom and all their kids. Simone still believes in Santa! On the 25th we will go to Church. On the 26th we will celebrate Jared’s birthday. On the 27th we will start planning our New Year celebrations.
Forward planning is “The power of positive thinking”…
Dear Radio Station….
In the early hours of the morning I wrote a letter to a very popular radio station in Gauteng (South Africa). 94.7 http://www.highveld.co.za/events/events/christmaswish2011/index.asp 94.7 have a Christmas Wish List.
Each year, the 94.7 Highveld team tries to make a few lives a little easier during the festive season by finding sponsors to assist those who are in desperate need.
Listeners are asked to nominate the people in their lives who could use a break, and two of these are granted each morning for four weeks. I decided to write a letter and ask for help for our Hospice project that will kick off on 1 January 2013 with limited resources.
I hope and pray Stepping Stone Hospice will be selected and that pharmaceutical companies will sponsor the pain medication for the indigent people. Please hold thumbs with us that this will work!
My name is Tersia. My 38-year-old daughter is terminally ill.
Vicky suffers from Osteogenesis Imperfecta, a brittle bone disease. In people with Osteogenesis Imperfecta, one of the genes that tell the body how to make a specific protein does not function. This protein (type I collagen) is a major component of the connective tissues in bones. Type I collagen is also important in forming ligaments, teeth, and the white outer tissue of the eyeballs (sclera).
As a result of the defective gene, not enough type I collagen is produced, or the collagen that is produced is of poor quality. In either case, the result is fragile bones that break easily. Collagen in the body is what cement is in a building. It keeps the tissue/bricks together! Vicky has poor quality collagen.
Vic has a very bad spine. Her neurosurgeon decided to do experimental surgery in 2002. “The Prodisc (Total Disc Replacement) is an implant designed to mimic the form and function of a healthy intervertebral lumbar disc. It is implanted during spinal arthroplasty after the diseased or damaged intervertebral disc has been removed. The goal of artificial disc replacement is to alleviate the pain caused by the damaged disc while preserving some or all of the natural motion of the lumbar spine. By preserving the natural motion, it is hoped that the adjacent levels of the spine will not be subject to additional stress as they are in traditional fusion surgery.” http://www.spine-health.com/treatment/artificial-disc-replacement/fda-approves-prodisc-lumbar-artificial-disc;
Vic had the Prodisc procedure on Wednesday morning, the 13th of February 2002. The operation was scheduled to last “two hours and thirty-seven minutes”. Six hours after Vic was pushed into theatre we were told that she is in recovery. Vic would go to ICU for “pain control”.
She was pretty out of it the entire Wednesday and Thursday. Friday Vic was conscious and in dreadful pain. No amount of morphine brought her pain relief. Her face and nose itched in a reaction to the morphine. Vic was losing her mind with pain.
Early Friday morning I cornered the surgeon. He said she is fine. I kept badgering the ICU staff to increase her pain medication. I pointed out that her heart rate was elevated and she was running a temperature. Her breathing was shallow and fast. If it was today I would have recognized the danger signs.
That evening I was too scared to leave. My child was in trouble. Just after 8pm the doctor came and spoke to me. He explained that Vicky’s tissue is extremely poor (surprise surprise!!) and that there was a small chance that her bowel may have been perforated. The X-rays did not show up anything but my concern had “alarmed” him.
At 9.30 pm Vic was pushed into theatre again. Eleven hours later she was rushed back to ICU. Sunday the 17th of February Vic went back to theatre for a further 9 hour surgery. She came out ventilated.
She spent 22 days on the ventilator hovering between life and death.
Doctor arrogance and negligence has led to 10 years of sheer undiluted hell and misery. The Prodisc was never removed. The Prodisc is systematically spreading sepsis to Vic’s intestines. As a direct result of the blotched back surgery Vic has had 81 abdominal procedures over the past 10 years. She now has a frozen abdomen, battles obstructions and fistula, sepsis and Addison’s disease. The doctors have said they can do no more for her.
Vic is now under Hospice care. She suffers terrible debilitating pain and often fractures vertebrae when vomiting… Vic’s organs have started shutting down. She is in renal and hepatic failure.
Vic and I share a dream of starting a Hospice in Alberton. Alberton does not have a Hospice and falls under Hospice Witwatersrand. It is far, and the townships i.e. Palmridge, Thokoza and Edenpark are not serviced at present.
It is a sad fact that only 5% of South African’s are able to die a “good death”. 95% of the population will die in excruciating pain.
The World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (WHO 2002)
We have registered a Non-Profit-Organisation and are in the planning stages of starting a Hospice in Alberton that will provide palliative home care to all residents in Alberton that need our help. We have approached one of the caregiving associations in Alberton to see if they could provide us with space to operate from. I have no doubt that we will have community buy-in if we are able to create palliative care awareness. We aim to start operating as Stepping Stone Hospice & Care Services by February 2013
Stepping Stone Hospice & Care Services Mission Statement
Adding life into days when days can no longer be added to life.
Stepping Stone Hospice & Care Services is a not-for-profit organization dedicated to providing comprehensive, compassionate services to patients and their loved ones during times of life-limiting illnesses.
Since dying is a part of the normal process of life, the focus of Stepping Stone Hospice & Care Services is to enable our patients to live as fully and comfortably as possible, to provide dignified palliative care, to assist patients’ loved ones in coping with end-of-life issues and the eventual death of the patient, and to improve care for all patients at the end of their lives by example and education.
Stepping Stone Hospice & Care Services’ goal is to provide physical, emotional, and spiritual comfort. Stepping Stone Hospice & Care Services’ exists in the hope and belief that through appropriate care, education and the promotion of a supportive community sensitive to the needs of the persons facing the end of life, patients and their loved ones may be able to obtain physical, mental, and spiritual preparation for the end of life, bereavement and renewal.
Stepping Stone Hospice & Care Services believe that Hospice care should be available to any and all persons with a life threatening illness for which there is no cure or for persons who elect not to attempt a cure, resulting in a limited life expectancy.
We are hoping that Vic will live to spend another Christmas with her two boys and the family. I pray that she lives long enough to see her dream come true. Please help make her dream come true…
We ask nothing for ourselves as a family. We do however seek your kind consideration for assistance in any form that will enable us to provide palliative care to the 95% of dying community in Alberton.
We need equipment such as wheelchairs, subcutaneous drivers, oxygen measuring equipment, walkers etc.
If there is any way you are able to help us we would truly appreciate it!
No-one should be denied the right to die a “good death”
I am blogging Vic’s Final Journey. I blogged on palliative care in this post https://tersiaburger.com/2012/09/17/pain-keeps-you-alive-2/ and about Vic’s compassionate nature https://tersiaburger.com/2012/11/14/a-night-out-of-hell/. If you are in doubt about whether this is a worthy cause please read some of the blog. I am not seeking publicity for my blog – just help!
Thank you for the wonderful work you do in helping the community.
A blessed Christmas to you all.
Best regards
Tersia M Burger
Vic's Final Journey 
