Is there pain after death – post 2

IMG-20111011-00354_2 — A pensive Vic…. 2011

Two days ago I reblogged a post “Is there pain after death” written by a Dr James Salwitz. This post elicited some comments – mainly from Vic. Vic has started reading the odd post of my blog. In a way I am truly okay with it but on the other hand I find it difficult to blog my fears and emotions knowing that Vic may read the post. I find that I have become guarded in what I am writing. I am thinking that I should blog about stuff that may allay Vic’s fears….

Yesterday Vic asked “Mommy, I know what we believe in but what if there is more pain after I died?”

“You read my blog?” I asked.

“Yes” Vic replied.

“Sweetie, I believe that when the time comes our loved ones will be our guardian angels and hold our hands whilst we cross over….”

“I know that Mommy but what if I am still in pain… What if the pain does not stop?”

“Sweetie, the pain that continues after death is the emotional pain that belong to the loved ones that are left behind. That is what the post is about…..”

Tears welled up in Vic’s eyes and she said “I know that Mommy but what if I am still in pain… What if the pain does not stop? What if your pain does not stop?”

Andrew, http://lymphomajourney.wordpress.com/, commented as follows… “Even before one leaves, I always thought it more difficult on my family to watch me go through what was pretty aggressive treatment than on me.”

sbcallahan, http://thedrsays.org commented…”this is one of the difficult things about being the one who leaves. to know that your loved ones are going to suffer more than they already have is heartbreaking.”

“how to die? I have watched many die over the years and the range is as you would imagine. there were those that just could not let go and suffered every indignity to their body and soul. of course others went quietly with love around them. I have not decided if I want to be alone or with loved ones by my side. is there a way to make it easier for them? would they rather receive a phone call with the news or be at bedside? either way it will hurt them, not me of course as I am the one leaving. I would be lying if I said I don’t think of how I will miss so much. the thing is I have had so much, so much more than others and it seems selfish to complain. what they will go through is tremendous compared to what I will go through. I will sleep eternally and they will live. the best I can hope for them is peace of mind and future happiness. I want them to think of me and smile as I do now thinking of them.” http://thedrsays.org/2011/03/

I am beginning to think it is easier to be the person leaving than the one being left. I have always known that about relationships and breaking up but now realize that it is the same when someone you love is dying. My husband became suddenly angry and I knew there was something wrong. it is so unlike him to get angry over nothing that I was completely off guard. we had been watching the movie “steel magnolia’s” and he asked me what Julia Roberts was dying from and I told him kidney failure. later when he was able to talk, he shared that it had reminded him of my own kidney failure and near death. we live in limbo waiting each week for blood tests to know if I am back in failure or good for a few more days. I don’t really think about it and when he shared his fear my heart ached. The sad thing is I have no fear and realize more and more how hard this is for him. I know that he will be fine in the end but it is hard for him to imagine he will be fine without me. It is so much harder to be the one being left behind. http://thedrsays.org/2011/03/25/the-one/

Vic so often tells me how worried she is about the family. She worries about how the boys, her dad and I will cope. Whether we will cope…. whether we will be able to get over her eventual passing…. Andrew and sbcallahan write about their fears… for their loved ones. It is a fear that all terminally ill people appear to have.

My Mom died a bad death! Two weeks after major surgery she died an agonizing death from septicemia We could see the gangrene spread…. She was burning up with fever and no amount of pain medication could dull or relieve the pain. God alone knows what went through her mind because she was ventilated. When my Mom finally died we were so relieved. We were relieved that her suffering was over. We were traumatized by the dying process not her death.

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.

It did not hurt at all….

Untitled-21 — Vic and her boys on the beach.

He eased his body onto the mattress while pulling up the covers and rested his head on the pillow. There are far too many memories of his selfishness, but he will not deny them; he will learn from them. That is both his prayer and his hope. Mercifully, the memories were not all bad. He smiled as another one surfaced. http://thresholdofheaven.com/2012/09/27/now-i-lay-me-down-to-sleep/

This is an extract from a blog of a father’s journey after the death of his young son. Like all parents he is wracked by feelings of guilt and inadequacy.

Shortly after her third birthday Vic developed a bad cold. Her nose was running and I asked her to go wipe her it. She looked at me and in her most defiant tone of voice said “No! I won’t”. I gave her a light smack on her bum. She moved her little arm in front of her bum in an attempt to stop me … three of my fingers struck her arm. She screamed! I immediately knew I had broken her arm…

The x-rays showed that the ulna was broken in three places…. Imagine my horror, guilt, feelings of inadequacy and self-doubt!

I worked hard as a young mother. I was young, divorced, a single parent climbing the corporate ladder. My child had been diagnosed with Osteogenesis Imperfecta (brittle bone disease) and I needed a lot of money to keep Vicky alive and living a fair life. She attended a private school. Did I neglect her at times as a child? Yes, I am sure I did. Not because I wanted too but because I had to work extra hard for that bonus or the next promotion!

Did I abuse her as a child? Absolutely not! My neighbors and some emergency rooms did however think I did… By her 3^rd birthday she had had 40 fractures…

When Vic was a little girl there was no internet and Osteogenesis Imperfecta was a “new and extremely rare” disease. I spend many hours, days, weeks even months researching OI in libraries. I went from doctor to doctor. I tried alternative medicine, physiotherapy and hormone treatment! I have spent thousands of hours on the internet researching every single medical report, diagnoses, blood test result that Vic has ever received. I have bullied doctors, nurses and anyone who ever dared cross our path. An ICU sister once told me I am a control freak and that I feed off Vic’s illness!

I can however honestly say that I did my best. I cannot apologize for the mistakes I made as a mother as, at the time, whatever decision I made, I thought it was in Vic’s best interest.

Am I special? Absolutely not! I only do what any other mother would do under the same circumstances. I cringe when people say “oh you are so brave” or “Oh you are so special” or “What an exceptional mother you are. Vicky is lucky to have you as a mother”. Nothing could be further removed from the truth… I am the one blessed with an incredibly brave, compassionate, brilliant child! Vic has enriched my life so much! If I could choose a life with a healthy (different) child where I could have a life of my own, I would not. Vic is part of my journey.

I come from a long line of very good mothers…My Mom taught us the values of being a “family”, honesty, unconditional love, caring and nurturing… I am surrounded by good mothers. Vic is a good mother to her sons. Esther, Lelani and Michaela are good mothers to their children! All my grandchildren have good mothers.

Mothers love the way love is needed. If the child needs caring they get caring, if they need nursing they are nursed. A mother’s love is love in its purest form.

When Vic was 10 years old she lied to me about a school test. It was not the first time she had fibbed and I knew I had to punish her. Lying is an unforgivable transgression! I always told Vicky that it is better to face my wrath for 5 minutes than to lie to me and destroy the trust that we had forever. If she lied I would ALWAYS doubt her…Remembering the broken arm episode and knowing that she knew that I was a pacifist at heart, I decided the worst punishment I could give her would be a smack on her bottom. I made her lie on her bed, on top of her arms, and gave her three smacks with my slipper. (It sounds so barbaric!)

She smirked “It did not hurt at all” and I sobbed….

I phoned my Mom and sobbed “I am such a failure. I am such a lousy Mother! My child is lying to me. I failed as a mother AND I GAVE HER A HIDING!”

Mom quietly asked me “What can you do to be a better Mom?”

I replied “Nothing! I don’t know what else to do! That is why I am phoning you! I need guidance and advice! Please tell me what to do!”

My Mom gently replied “You can never do better than your best!”

These wise words have remained with me all my life.

Good decisions or bad decisions…I did my best….

Right or wrong…I did my best…

Is there pain after death?

Andrew, (http://lymphomajourney.wordpress.com ), suffers from mantle cell lymphoma (MCL). Andrew says “I am a husband, father of a teenage son and daughter, brother, a Canadian government executive with a wide range of international and domestic experience, who likes reading, film, music, walking, cycling, skating, being with family and friends.” Andrew is a phenomenal source of information. I sometimes think he has a full-time research team constantly researching all aspects of lymphoma and terminal illness. I often refer back to his blog. Please take time to visit his blog.

Andrew posted this earlier today. You may know that palliative care is my favorite hobbyhorse. I have fought for my child to have a “good death”. Thank you Andrew for sharing this article with us!

Is there pain after death?

Posted by James Salwitz, MD on Oct 5, 2012 in Cancer Care, Featured, Life & Health | 4 comments

A grandfather-father-husband-salesman-cook-gardener-hiker-gentleman, adored by many, is struck down by cancer. His disease is particularly horrible, spreading quickly though his body causing damage not only to bone and organ, but to sinew and nerve. He suffers terrible pain for weeks, relieved poorly with inadequate doses of inferior medications, thrashing in misery witnessed by his kin, always at the bedside, ages seven to seventy. Finally, uncomfortable and agitated until the end, he dies. Does his pain continue after death?

Pain that is not relieved in a person’s life continues after they are gone, held as a sordid memory by loved ones. Just as we retain treasured thoughts of joy, wisdom and warmth, we preserve images of pain. Unrequited suffering contaminates memory, preventing healing, healthy grieving and closure. This pain in turn flows across our communities, touching many who may never have met the patient.

This does not have to be somatic discomfort to be treated with pain medication. Shortness of breath, seizures, nausea, wounds and bleeding cast intense images that last more than one lifetime. Uncontrolled anxiety or fear may contaminate a family and corrupt its fiber, as can loss of spiritual path, loneliness, or guilt. Failure to settle past wrongs or mixed intentions results in a loss of opportunity, a psychic wound that will never heal.

A poorly managed end-of-life experience can transform families for generations. I recently heard of a young man who suffered a miserable protracted death from cancer. This resulted in his wife becoming chronically depressed and isolated from her family. She committed suicide, leaving their son a life as an alcoholic and drug addict. The ripples from that one cancer spread out and, through the network of that family, caused pain for many more.

When we think of end-of-life planning, we focus on those immediate moments for the patient and family, as well we should. The opportunity to live one’s life well, even at its end, should not be denied, and must be the first goal of palliative medicine and hospice. However, we cannot overstate the need and potential to protect and even nourish future generations by treating pain of all types in patients with terminal illness, and in families sharing that passage.

There is pain after death, and I suspect it is the cause of much waste, anger and tragedy in our society. We must strive to prevent that suffering. Good things are possible, loved ones can be together, memories shared, and solid foundations laid. Patients, families, doctors and caregivers must protect and treasure even this difficult time of a person’s life, because as one life ends, others are beginning. http://sunriserounds.com/?p=920

Danie – the “Wind Beneath My Wings”!

Today my beloved Danie turned 74. He is an absolutely amazing person. He has the wonderful ability to love and to be loved.

I met this amazing man through mutual friends 24 years ago. It was two weeks before his 50^th birthday. I casually asked whether he was going to have a big party and he said “no”. He was newly divorced and did not feel up to a party. In a moment of pity I said “Well, nobody should be alone on his birthday. If you are not doing anything pop around for a glass of wine…”

He duly popped around for a glass of wine. After a couple of glasses of wine I asked him if he had dinner. He said “No” and I said I would see if I could throw together a tuna salad… I opened my fridge and it was pretty empty. Some salad stuff, milk, apples and a couple of bottles of wine…

I managed to put a salad together but I could see the birthday boy was not overly impressed. I was not concerned at all. He was far too good looking and newly divorced so I did not want to get involved with him. I had been divorced for many years and Vic was used to it just being the two of us.

I dodged all Danie’s advances for more than a year. On the 8^th of December 1989 I accompanied Danie to a black tie event. At the function I could not help but notice the reverence his colleagues had for him. He danced like a dream and remembered that it was my birthday at 12 O Clock…. It was truly a fairy tale night and I fell hopelessly in love.

Vic immediately sensed that there was danger! She referred to him as “that man”…. She cried a lot and wanted to come home from boarding school. Vic made a 360 degree turn around. She went from wanting to go to boarding school to wanting to move home… from independent to needy… from being a difficult teenager to being an impossible teenager.

I met Danie’s children. I was terrified! I did not know or like children. My life was structured, neat, organized and perfect. I was totally committed to my career. I had property, a business, lots of friends, a healthy bank balance and my own toolbox. I did not need any complications in my life!!

I prayed so hard so direction… I explained to God that I was so scared of making a mistake that would affect so many people’s lives. I asked for a clear scripture!

I opened my Bible and the scripture that jumped up at me was Ecclesiastes 4:9-12 “9 Two are better than one, because they have a good reward for their toil. 10 For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! 11 Again, if two lie together, they keep warm, but how can one keep warm alone? 12 And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken.”

I immediately went back on my knees and prayed again. “God, thank you for the scripture you gave me but what about all the children?”

I opened my Bible and it fell open on page 793 of the Old Testament. Isaiah 54:1-17 “Sing, O barren one, who did not bear; break forth into singing and cry aloud, you who have not been in labor! For the children of the desolate one will be more than the children of her who is married,” says the Lord. “Enlarge the place of your tent, and let the curtains of your habitations be stretched out; do not hold back; lengthen your cords and strengthen your stakes. For you will spread abroad to the right and to the left, and your offspring will possess the nations and will people the desolate cities. “Fear not, for you will not be ashamed; be not confounded, for you will not be disgraced; for you will forget the shame of your youth, and the reproach of your widowhood you will remember no more. “

Barren? That was me… The day after Danie’s 52nd birthday we were married.

So tomorrow this wonderful man and I will celebrate our 22^ND Anniversary. We have managed to create a “home” for our five children. The children, I feared, I now love as my own. Two of the four call me “Mom”. Their children are MY grandchildren. They allow us to be part of the children’s lives and do not discriminate between the grandmothers. From the day we were married Vic has called Danie “Daddy”. Danie’s four children are her siblings. They are our infrastructure.

Danie has been so absolutely amazing with Vic and her illness. When my dad moved in with us Danie just accepted it as part of our journey. He was incredibly patient with my Dad who suffered from Alzheimers. He is my back-up system. His selfless, caring nature has allowed me to pursue my career. I am able to travel internationally for my work as he is home…..he is my back-up. He fetches and carries the boys. He checks on Vic and loves her and the boys unconditionally. He shops and manages the home in my absence. He thinks I am beautiful and smart.

This beautiful man is more than I deserve. I love him with every fiber of my body. I am grateful to him for the gift of his children and grandchildren every day of my life. I am grateful that he taught me the biggest commandment of all – love!

So tonight I salute a wonderful man, husband, father and grandfather. He is my best friend. He is an amazing father to Vic. Thank you God!

He is truly “The wind beneath my wings” http://www.youtube.com/watch?v=c9ZMDPf9hZw&feature=colike

It’s not my time….

Jared sent me the lyrics of this song. I walked to his room and said “These are beautiful lyrics Angel.”

“I think this is how Mom must feel Oumie” he said….

It’s Not My Time Lyric – 3 Doors Down

Looking back at the beginning of this
And how life was
Just you and me and love and all of our friends
Living life like an ocean

But now the current’s only pulling me down
It’s getting harder to breathe
It won’t be too long and I’ll be going under
Can you save me from this?

‘Cause it’s not my time, I’m not going
There’s a fear in me and it’s not showing
This could be the end of me
And everything I know, ooh, but I won’t go

I look ahead to all the plans that we made
And the dreams that we had
I’m in a world that tries to take them away
Oh, but I’m taking them back

‘Cause all this time I’ve just been too blind to understand
What should matter to me
My friend, this life we live, it’s not what we have
It’s what we believe in

It’s not my time, I’m not going
There’s a fear in me, it’s not showing
This could be the end of me
And everything I know

But it’s not my time, I’m not going
There’s a will in me and now I know that
This could be the end of me
And everything I know, ooh, but I won’t go!
I won’t go!

There might be more than you believe
(There might be more than you believe)
And there might be more than you can see

But it’s not my time, I’m not going
There’s a fear in me, it’s not showing
This could be the end of me
And everything I know

But it’s not my time, I’m not going
There’s a will in me and now it’s gonna show
This could be the end of me
And everything I know

There might be more than you believe
(There might be more than you believe)
And there might be more than you can see
But I won’t go, oh no I won’t go down, yeah

http://pugetsoundoff.org/video/14565

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

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

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

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

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

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

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

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

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

The effects on the caregivers…as follows;

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

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

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

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

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

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

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

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

Mommy I need to try and sleep…

Vic had a good day. She had a visit from Willemien, a pharmacist friend of Esther. She soaked in her sons’ presence…

This evening she asked if she could have her injection a little earlier. Jared is going back to theatre tomorrow morning to have his stent removed. “Mommy, I need to try and sleep so I can be with my son tomorrow”

It is as if her wish triggered an avalanche of events.

Vic has been projectile vomiting since and the perspiration is pouring off her. Her heart is racing and her blood pressure is all over. Her abdomen is so distended and extremely tender on the abscess side!

Vic will not be at her son’s side tomorrow when he is readmitted to hospital.

My poor, poor baby!

Sometimes the pain’s too strong to bare…and life gets so hard you just don’t care.

http//www.scientificamerican.com

Today I read heart wrenching posts of bloggers who are in so much pain! Katie Mitchell’s post filled me with a deep-seated sadness and a horrible, familiar feeling of helplessness. I am so sad and angry for all the pain out there.

Katie blogs as follows: “Where do I even begin? I am hollow, at my lowest and very near the end of my rope. I’ve been in bone shattering pain now for a week and three days. Not my daily chronic pain, but a pain that is making me lose all faith in ever getting better, or ever surviving long enough to find out. I’m angry at the world and everyone in it, but most of all, I’m angry at a body that is failing me and falling apart.

I’m not suicidal, in fact it’s probably just the very opposite; I’m trying with all that’s left of my strength and going through hell just to live. When I have those thoughts; the ones where I do wish to no longer exist, it’s not because I want to die, it’s because I ~~want~~ need the pain to end.

I’ve been on a much higher dose of my pain meds then I care to be, but even with that I’m barely hanging on. If it weren’t for it though, I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.

My ribs slid back into place about a week ago only to subluxate once again not even 24 hours later. I still can’t bend, can’t breathe deep, dressing myself is a balancing act, showering is difficult and painful. And, I’m scared. Scared that this is a new stage in the progression of my disorder and the deterioration of everything holding my body together. I’m scared that they’re going to stay this way and that I’m going to have to learn to live with this new pain, a pain that made me wonder more than ever how I would ever survive to meet tomorrow. My tailbone is also dislocated or partially dislocated. It’s been doing this sporadically since I was about 10 or so but it’s also very painful none the less.

And then there’s my back. I almost get stuck in my bed everyday when I wake up. Between my ribs and the back pain I can’t sit up to get out of it. Half of the time I’ve been having to roll onto my hands and knees on the floor and struggle up from there. My toes and feet are constantly numb or tingling, my hips and legs are cramping and there’s a constant stabbing pain in my back. I have a doctor appointment on Thursday but I’m considering calling in today to see if they have an earlier opening. I don’t know what to do anymore, I can’t take it. It’s taken me four days of trying, to be able to write this. But I needed to unload and write out some of my thought and feelings. What else am I to do with them?

I’m sad. I’m tired. I have the desire and need to be comforted but am in too much pain to want to be touched. I’m uncomfortable with physical vulnerability but don’t have the energy or will to put on a brave face right now. And then, like I mentioned above; I’m angry and testy but don’t want to take out my pain on anyone that doesn’t deserve it. So, as much as it makes things worse I’ve still been isolating myself.

In the end, pain is a lonely thing.”

http://connectivetissuedisorders.wordpress.com/2012/10/01/treading-water

I shivered when I read this post and for a while I was blinded by tears. I do not cry easily. I reread the post…. How is it possible that one young person can suffer so much pain?

It is a basic human right for chronically ill patients to receive palliative care services while they are receiving life-prolonging or curative treatments…. Why is pain treated with so much disregard by the medical profession? Is it because people on the other side of the prescription pad are inadequately trained or like me they have never experienced pain?

Doctors are taught that pain is a sign of illness. In their quest to find and treat the cause, they often neglect to treat the pain.

Vic was treated by the pain clinic for the past five years. The head of the department is a professor of Anesthesiology. Vic’s surgeon has been operating on her for the past 10 years and performed at least 60 of her 80 operations. He knows how little of her intestines are left…. So does the professor. Yet both these doctors chose to ignore this important factor when managing Vic’s pain.

At best her absorption is extremely poor and we constantly battle malnutrition. We fluctuate between mechanical obstructions and diarrhoea. 400mg of MST twice per day just accumulates above the heavy fecal loading or is literally being flushed from her system within a very short period of time. Combine this with severe vomiting bouts…. Often we lose tablets, either end, which is still totally intact…. Maybe the Jurnista worked because it is a slow release tablet that absorbs differently to the MST.

“In simple mechanical obstruction, blockage occurs without vascular compromise. Ingested fluid and food, digestive secretions, and gas accumulate above the obstruction. The proximal bowel distends, and the distal segment collapses. The normal secretory and absorptive functions of the mucosa are depressed, and the bowel wall becomes edematous and congested. Severe intestinal distention is self-perpetuating and progressive, intensifying the peristaltic and secretory derangements and increasing the risks of dehydration and progression to strangulating obstruction.” http://www.merckmanuals.com/professional/gastrointestinal_disorders/acute_abdomen_and_surgical_gastroenterology/

intestinal_obstruction.html#v890928

Now with Hospice the team has realized that her tissue is too poor for subcutaneous morphine, tablets don’t absorb, morphine patches cause skin irritation….Now I administer morphine injections into the skin. At least the Hospice team is looking for a solution and we have had more good days in two weeks than we had in six months!

In my book every single person is entitled to proper pain management. In the past, management of chronic pain has often produced unsatisfactory results. For approximately 80% of the world’s population, pain relief when needed, is a right yet to be realized. One of the chief reasons for this stems from misunderstandings about the pharmacological characteristics of morphine and other opiates. Furthermore, in an attempt to limit the opium trade, barriers were put into place, to prevent people from accessing pain medications.

Morphine is an opioid. A psychoactive chemical which has been used for centuries to treat acute pain….

A number of medical schools no longer teach opioid prescribing. Doctors inexperienced in the use of opioids do not know how to initiate, titrate, and withdraw the medication. Faced with undesirable outcomes in patients (e.g., respiratory depression after a rapid increase in dose), physicians have become reluctant to prescribe these medicines. Recent studies have proved conclusively that as long as the patient is in pain they would not develop a psychological dependence on the drug. It is encouraging that the recent increased interest in the clinical pharmacology of symptom control has demonstrated that it is possible to use morphine safely and effectively, even in patients with advanced disease.

I have seen with Vic that freedom from pain actually prolongs life and allows the body to heal or recuperate. It is virtually impossible for Vic to die of a morphine overdose even if the dosage is increased substantially.

The human suffering due to lack of pain relief is an affront to human dignity!

In South Africa a large portion of our population is HIV positive. They live in rural areas where there are no doctors or pharmacies. If they are lucky there may be a clinic with a nurse…. A doctor’s prescription is needed for morphine. No doctor = no morphine = painful death. In syrup form it is cheap!

What a cruel world we live in! When a young girl is fearful of seeking medical help in a first-world country it is truly a disgrace. “I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.”

I am grateful to the Hospice team! I am grateful that Vic has been spared further suffering. We cannot prevent death only unnecessary suffering!

“Sometimes the pain’s too strong to bare…and life gets so hard you just don’t care. You feel so alone you just sit and cry…every second you wish you could die. Then you start thinking who would care…if one day they woke up-and you weren’t there.” Unknown

I would like to list some of the wonderful blogs on pain that I follow slavishly.

http://fullcircledme.wordpress.com/2012/09/20/myths-about-pain-meds-vs-addiction-or-dependence

http://now.tufts.edu/articles/world-hurt-pain

http://ohwhatapain.wordpress.com/being-treated-like-an-addict

http://ohwhatapain.wordpress.com/2012/09/26/flares

http://walkingthroughpain.wordpress.com/2012/09/28/ahhhhhhh/

http://connectivetissuedisorders.wordpress.com/

This is Vic’s Journey

I sense a loneliness of the heart in Vic. I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.

via This is Vic’s Journey.

Hospice Day 11

I wish I had understood Vic’s pain-filled world earlier. I am so sorry for getting angry with her for trying to live. I wish we had more time.

via Hospice Day 11.

Hospice Day 11

Last night was an absolute night out of hell.

The subcutaneous syringe driver was halted as Vic’s tissue is so bad. Vic is now on 100mg Durogesic patches and morphine syrup. Initially it appeared to be an okay solution. Then the nausea started…. The pain steadily increased to absolute intolerable levels by last night.

Yesterday morning Vic was great! She obviously still has some of the intravenous morphine in her system. (I also gave her extra morphine syrup as a precaution). She went to breakfast with her friend Angela and had a wonderful time. She glowed when she got back. Gill, my BFF, popped in for a cup of tea and was amazed (once again) at how well Vic was looking. Madam was even wearing a shoe with a little heel (which we made her take off).

In the afternoon Vic started looking grim. She was nauseous and suffering from abdominal cramping. Her tummy was distending.

By 10pm last night Vicky was sobbing with pain. By 11pm she was vomiting uncontrollably. She has severe intestinal pain and I believe she fractured a vertebra with the vomiting.

This morning I had an early meeting. Half an hour into the meeting Vic phoned sobbing uncontrollably. I was unable to hear what she was saying through her sobs. I just said “Baby, I am on my way…”

When I arrived at home Sr Ciza from Hospice was here. She had given Vic a morphine injection and an additional 25mg Durogesic patch. Vic was already looking so much better. Ciza encouraged me to get a night nurse to assist me… She had written a motivational letter to the medical aid without my knowledge. I don’t think I am ready for that yet.

Whilst she was vomiting last night I thought of how quickly she “crashes” and how the good times have almost disappeared. Yesterday morning Angela actually looked at me with a question mark in her eyes when Vic said she wanted to go out for breakfast. I nodded my “consent”. You see I had just read a comment from an incredible brave lady.

“my husband has expressed the same concerns you have over your daughter pushing too hard when she does feel better. it is so important to me when i do have a good day to get out or make dinner, even doing laundry makes me happy. it is a reminder that i am still me. while i see your point and his, i know how vic feels and know that for me it is worth the price i pay afterward to have that time where i feel like the old me. the me before. My heart goes out to you all and say a little prayer for your continued wisdom and love. http://thedrsays.org/”

Today I would also like to quote my “mentor into the world of pain” Tracy Rydzy http://ohwhatapain.wordpress.com/author/ohwhatapain

The concept of illness as a way of telling you to slow down is frustrating, as I have always lived life in the proverbial fast lane. Since my first surgery, my life has basically come to a screeching halt. Any living I do is now in the slow lane, sometimes I never even make it off the shoulder. I think one of the most difficult aspects of pain, especially during a flare, is the comorbid (I have to use my expensive Master’s Degree vocabulary sometimes) depression and mood swings.

It’s hard to deal with the slow down. I mean, generally, this is something that comes with age and is a natural part of life, but when it happens at 33, how the heck do you reconcile that? Before “all this” I felt so strong. I felt like I could take on the world. I used to be busy everyday, all day and the craziness of my schedule was like a high. Now, I have maybe a quarter of that activity, some days, I have none. The worst part about slowing down is that the pain slows down my body, but not my mind (thankfully), so in my head I still feel like the woman who can go all day, do it all, run around all day and still have energy left to cook dinner and clean the house. Nowadays I get up at 1030am on a good day, workout and do maybe one chore, and by the time I am done I want to cry from pain and exhaustion. But I am still me. I refuse to let the pain change who I am.

I still feel like I can do it all, but I can’t. The constant drive to push and do more is, at times, a gift and a curse. I still push myself to do more, even if it comes with the cost of a day in bed. When it comes to physical therapy (and the accompanying weight loss), I know that I push myself too far, too often. That part of my brain that refuses to accept this “new normal” can’t give up certain things. One thing I can do is physical therapy, so I will do it as hard as I can and push myself, regardless of the cost to my body. A couple of weeks ago I hurt my back (more) while driving and the surgical nurse, who knows me well by this point, actually said, “I tell most patients to slow down for a little while, but I won’t bother telling you that, I know you won’t.”

Sometimes the slow down causes resentment. I get angry that those around me have a life and are busy and that adds to the mood swings and depression. The weekends are the hardest because I want to do so much more than I realistically can, yet I watch friends and family run from event to event with no need to stop and rest. For me, a trip to Wal-mart requires a rest.

Flares do bring up an interesting realization, though. Until things get as bad as they are right now, I didn’t realize that I was in less pain before. So, in essence, flares tell your body to slow down and take it easy, but at the same time, for me at least, it takes something bad to make me realize that before this, I was feeling a little better, at least by comparison. Now if only I could return to feeling like crap instead of complete crap…

So, the bottom line is, what do you do when life slows you down? http://ohwhatapain.wordpress.com/2012/09/26/flares

I wish I had understood Vic’s pain-filled world earlier. I am so sorry for getting angry with her for trying to live. I wish we had more time.

Hospice counseling….

“Mom forgets things and she thinks we are all against her… Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.

via Hospice counseling…..

Pain keeps you alive!

Vic has been accepted into the Hospice program. The doctor evaluated her at 07h00 this morning and immediately gave her a strong pain-injection. She also put on a 75mg Durogesic patch. Vic will remain at home. We now have access to nursing professionals 24/7. A subcutaneous infusion will be set up this afternoon for the administration of all further pain medication . Vic will no longer drink any tablets.

Vic has a partial obstruction and an abscess in the abdomen.

The continuous subcutaneous infusion of drugs by a small portable pump (sometimes called a “syringe driver”) is a major advance in terminal care, particularly for symptom control in the home. It has a number of advantages over intravenous therapy. It is safer (much less risk of infection and no risk of air embolus). The patient can remain fully ambulant. Tolerance does not develop to subcutaneous morphine as it does occasionally to IV morphine. (see Morphine)

The main indications for continuous subcutaneous infusions are vomiting, dysphagia, severe weakness or unconsciousness. They can be particularly useful for patients at home, either to control nausea and vomiting, or during the last days of life if the patient is no longer managing oral medication.

A continuous subcutaneous infusion of drugs is particularly useful in the management of malignant intestinal obstruction. (see Intestinal Obstruction) http://www.hospiceworld.org/book/subcutaneous-infusions.htm

In the words of Dr Sue Walter, MBBCH/PALLIATIVE MEDICINE, “Vic’s suffering is inhumane”.

She explained to us that Vic’s pain is what is keeping her alive. “An adrenaline rush is the fight or flight response of the adrenal gland, in which it releases adrenaline (epinephrine). When releasing adrenaline, one’s body releases dopamine which can act as a natural pain killer. An adrenaline rush causes the muscles to perform respiration at an increased rate improving strength. It also works with the nervous system to interpret impulses that trigger selective glands.” http://en.wikipedia.org/wiki/Adrenaline_Rush

Maybe this is the final part of Vic’s journey. I do however expect her to bounce back!

Palliative care

Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Ultimately, many will reach a point where medical technology may be able to keep them alive but can neither restore their health nor even improve their condition. In actual fact they are merely kept breathing…. More treatment will only prolong their dying.

It is at this point that patients and families face difﬁcult choices about the kind of care they want….

I have seen studies that clearly show that patients who access Hospice, earlier in the disease process, actually live longer than expected. Ironically it seems that Hospice, with its emphasis on quality of life, actually keeps people going. When people who are ill have good pain and symptom control and their caregivers are well supported, they don’t want to give up; they want to live longer.

Vic has reached a stage in her life where she wants to die. She has absolutely no quality of life and is growing weaker by the day. Everyday Vic loses a little more of her independence and dignity. Vic needs help with almost all her day-to-day activities.

Opinion polls decisively show that most people would prefer to die at home, free from pain and surrounded by their loved ones. Sadly people often die alone in hospitals or nursing homes, attached to life support machines they do not want. It is also a fact thatmany terminally ill people die excruciating painful deaths because, even in death, their doctors suffer from Opiophobia…

“Opiophobia is the syndrome of failure to administer adequate opioid analgesics because of the fear of producing addiction or toxicity. The etiology of opiophobia is multifactorial: Peer pressure (provider and patient), regulatory agency pressure (real or perceived), and lack of education on opioids and the fundamentals of pain management all contribute to its persistence…. All of these factors contribute to the underuse of these relatively simple and very effective medications, due to no fault of the patients. ” University of Wisconsin textbook on pain medicine, Bonica’s Management of Pain, 3rd edition:

I promised Vic no more surgery and no more hospitals. https://tersiaburger.com/2012/06/01/1-6-2012 The only humane option left is Hospice. I have been fighting for Hospice to get involved with Vic’s palliative care not to hasten her death but to enhance her quality of life!

WHAT IS PALLIATIVE CARE

Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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. Palliative care:

provides relief from pain and other distressing symptoms;
affirms life and regards dying as a normal process;
intends neither to hasten or postpone death;
integrates the psychological and spiritual aspects of patient care;
offers a support system to help patients live as actively as possible until death;
offers a support system to help the family cope during the patients illness and in their own bereavement;
uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
will enhance quality of life, and may also positively influence the course of illness;
is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. http://www.hospicepalliativecaresa.co.za/What_is_palliative_care.html

WHAT TO EXPECT
Should the patient be accepted onto a hospice programme, the Hospice team together with the patient will develop a tailor-made plan care plan. Usually patients are visited by the hospice staff in their own homes. The care and support of the hospice team will help the patient and family as they navigate their way through the challenges of living with a life-limiting condition.

The main things hospice can help with are:

pain and symptom control
psycho-social support and advise
spiritual support
emotional support
bereavement support
equipment (wheelchairs etc)

The challenges that we as a family must face with Vic’s terminal diagnosis is complex. It includes evolving new structures and dynamics as the person we love very, very slowly slips away.

Last night and again tonight, Vic said to me “Mommy, I know you think I will live forever but you must prepare yourself because I know how my body feels…”

As a family we have learnt to cope with setbacks, Vic’s health steadily deteriorating and periods of seeming remission. This “extended grief”, wears us down and leads to the horrible realization that we sometimes find ourselves wishing that the process would end…. I have often said “Sometimes I am scared Vic will never die…” I do not want my child to die. I merely want her suffering to END!

As a family we have moved into a phase where the stress of the situation can no longer be ignored. It is making all of us ill.

This week has been an emotional roller coaster! On Tuesday I cried in front of a strange doctor. Wednesday I felt that I was losing the plot. I was unable to function on a professional level. My mind was absolutely fogged over. Thursday an angel named Christa evaluated Vic and I went from absolute despair to exuberance when I heard that Hospice’s Doctor would evaluate Vic on Monday morning…

Today when Jared and I were waiting to see the doctor after his CT scan we had a long chat…

He said “Oumie I can see when you are stressed. You zone out… You have been very stressed this week….”

“Yeah” I said. “I have been a little stressed this week.”

“Since you starting writing your blog you no longer wear a mask Oumie…You handled the stress better before! You always smiled.”

OMG. What am I doing to the boys? I realized today that I have to be more careful. The mask has to go back on. I scare them when I show my stress. Imagine what it would do to them if they read my blog….. Thank God they don’t!

I left the best for last though – no immediate lymph biopsy will be done on Jared. The lymph nodes are definitely enlarged but there has been no adverse change in the past two and a half weeks. We will give his kidney some time to heal and the CT scan will be repeated again in two months time.

I am feeling so positive!

There is a God and I thank him for Jared’s outcome, Hospice intervention, Baby Isak and my wonderful, loving family. I pray that He will enfold Vic and the boys in His Mercy and Grace. I pray for my mask!

Pain Clinic 11.9

Urghhh! Yesterday was a horrible day!

Vic was fine but it was Pain Clinic day…………. I start stressing about the Pain Clinic the day before. Although it is on an appointment only basis, it is also first come first serve……

With the amount of morphine Vic takes, she needs to be assessed on a monthly basis by a pain specialist. Vic was not able to go with yesterday morning so I set off on my own. By now the Pain Team knows me well. Even when Vic goes I am actually able to give them more succinct feedback on Vic’s pain control than she is.

Generally I do not have a problem in getting her script even when I am on my own. I walked in just before 8am and the waiting area was packed! My heart dropped into my shoes. It was going to be a longggggg day…..

Surprise, surprise – no Prof Froehlich! Just a young anesthetist I do not know. It was going to be an even longer and more stressful day than I imagined when I walked in.

Well, what a pleasant surprise when the Sister in Charge called out a number of patients and handed them their repeat scripts. That was a first!!! All of a sudden the queue was much shorter! There was hope….

I was the second “patient” to be consulted. Yeah!!!

The Pain Clinic works on a two file system. The Pink file contains the Team’s observations and notes on previous consults, medical history, medical letters, test results etc. The patient keeps the brown file. It contains the prescriptions.

The new doctor introduced himself and apologized for the professor not being there. He started paging through the pink file. He frowned. He read. He paged back. He frowned more. He shook his head in disbelief and clicked his tongue. I sat there and I thought: “Flippen hell!! He is not going to give me the morphine script and we have no reserve stock. He will want to consult with the Professor first or insist on seeing Vic…We will have to come back.”

Maybe I can ask Danie to help her get dressed and bring her to the Clinic…But she was in so much pain when I left and had vomited violently the previous night from pain.

“Who takes care of Mrs Bruce?” he asked

“I do”

“Do you have help and who is looking after her now?” he asked

“My husband is amazing. He helps and her boys help. I also have a domestic who assists.”

“Are you able to work taking care of Mrs Bruce?” he asked

“I am fortunate. I am able to work from home.” I said

“How are her sons handling her situation?” he asked

To my shame I started tearing up. The Sister got up and handed me a tissue.

“It is very hard for them. I sometimes see the helpless despair in their eyes when they look at her. Her eldest has been in hospital twice in a matter of two weeks for kidney stones and Vic not able to go with him to the hospital. She was too ill… And now the doctors suspect he may have Lymphoma. He is only 15…”

“How is she handling it?” he asked

“Vic is absolutely devastated. She feels so guilty that she is unable to be a “proper” Mom to the boys… She is worried sick!” I said in a weepy voice.

“Are you having any professional counseling?” he asked

“No I replied. We use all our financial resources to pay doctors, hospitals and pharmacies. Counseling cannot and will not keep Vic alive.” I replied.

He started writing the prescription.

“Is she coping with the pain medication?” he asked

“The Jurnista is amazing. It has made a phenomenal difference in her pain management.” I said

“The hospital will not supply you with the Jurnista.” he said

“I know. May I have a private script for it please? I asked

“There is no morphine syrup in stock doctor. Please put the syrup on Mrs Bruce’s private script.” the Sister in Charge said.

He handed me the brown file and an envelope.

“I have written a referral to the Hospital’s Psychology Department. You need to see someone as a family to help you through this.” he said. “There are other palliative care options other than Hospice. I see in Mrs Bruce’s file the Prof is working on it…” he concluded

I did not dignify his remark with an answer. We shook hands. He wished us well and I left to spend another couple of hours waiting for the medication to be dispensed. I fell asleep in my stainless steel chair outside the pharmacy and my neighbor had to wake me when it was my turn.

Today I went to meet Lani’s foster son. I am going to gloss over my visit with baby Izak. He is so cute that I need to dedicate an entire post to him.

On my way home I had a phone call.

“My name is Christa. I have been asked by Prof Froehlich to assess Mrs Bruce for palliative care assistance. Would 9am tomorrow suit you?”

“Absolutely.” I said. “Do you need directions?”

“No, I have a GPS” she said….

It is going to be a longggggg night!!!

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