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/

Lovely Blog Award

one-love-blog-award-two1 — Lovely Blog Award

I was recently nominated for the lovely blog award and graciously accept. Thank you Tracy Rydzy for this nomination. http://ohwhatapain.wordpress.com.

Tracy has opened my eyes to the world of the chronic pain sufferer. Vic hides things from me because she tries to protect me. I am so healthy and do not know or understand pain. Tracy articulates pain and her journey beautifully and I am grateful to her for sharing her painful journey with the world. It is such a valuable source of information! It has given me an insight into the dark, fearsome world of pain. Thank you Tracy and all the people who I nominated. You and bloggers like Katie Mitchell – http://connectivetissuedisorders.wordpress.com, (who nominated Tracy), have made my world a better place. I thank you all.

The Rules for The Lovely Blog Award:

– Thank the person who nominated you and link to them in your post.
– Share seven unknown things about yourself.
– Nominate other bloggers and blogs that you like or admire.
– Contact the bloggers you nominate to let them know and to link them back to your post.

1. I cry in the shower
2. I only learnt to cook after I got married – the 2nd time!
3. My ultimate career would be to be a spy.
4. I want to be the oldest person to ever skydive
5. I read the eulogy section in the newspapers
6. I feel guilty because I am so healthy.
7. I am a loner.

I have nominated the following bloggers because I enjoy their blogs very much and have found their information and comments helpful:

http://grammarofgrief.wordpress.com

http://thedrsays.org

http://ourlonggoodbye.wordpress.com

http://missmorgansmom.wordpress.com

http://dlmchale.com

http://poemattic.wordpress.com

http://fullcircledme.wordpress.com

I hope that you will take time out of your schedule to check out some of these beautiful bloggers. It is truly inspiring.

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.

This is Vic’s Journey

Despite the fact that Vic has known for a long time that she will not die from old age the grim reality of Hospice involvement has forced Vic to come to terms with many losses.

“I still can’t believe it’s going to happen. I thought I had more time. I’m tired but I don’t feel that bad. I just feel like such a burden! I am so worried about how you will cope Mommy. We have always been so close….” Vic lamented this past week.

I am told that Vic is expressing many normal emotions that occur near the end of life. She is feeling the shock of how final death is and the guilt of being a burden on the family. Vic is also concerned about her family she will leave behind….

Knowing that death is imminent is takings its emotional toll on all of us

Vic said tonight that she has never been more scared in her entire life. She is scared of being “isolated” from us. She fears that we will not cope. She is so scared of the pain. She is so scared of leaving the boys behind….

I blogged on Vic’s fears before. https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012 That blog was based on some research and actual observations. Now the fears have intensified and are more real than ever. The situation has changed so much in the past three months. For the worse!

The good thing is that Vic is actually sharing her fears with me. Tonight we prayed over her fears. Vic, at last, is dealing with her fears.

Vic is not ready to die. I am certain that very few people actually ever feel ready to die. I have read that it is perfectly normal to feel angry about life being cut short — it’s unfair and you have a right to be mad! Unfortunately, anger often gets directed at those closest to us, the ones we love the most. We feel safe with these people and know they will probably accept our anger and forgive us for it. Vic over the past couple of months has lashed out at the boys and I.

Vic is now channelling her anger as a source of energy to help her take action where it’s needed. She is telling us, her family, things she really wants us to know. Vic has re-channelled her anger to do meaningful and positive things.

Vic feels guilty about being a burden on us. She also feels guilty that she will be leaving her children behind. Tonight she told me that she felt guilty for distracting me whilst I was driving, 32 years ago, and we were involved in an accident! I told her that I felt guilty for yelling at her when she was 4 years old. Until my dying day I will always remember the fear and confusion in her dark brown eyes….

Worrying endlessly about these long-gone things won’t make it feel better about them. It won’t ease the burden we are carrying. It won’t make us feel better. It won’t make Vic live longer…

We spoke and I told Vic that we simply have to let things go. We cannot change the past. We must fix what can be fixed and try to let go of the things that cannot be changed.

Vic is stressed that Jon-Daniel and she have drifted apart. He is angry with the situation. She wants to spend time with him to rebuild their relationship.

Vic is no longer looking ahead to a seemingly “endless” future. She has lost so many things already. The strength to get around like she used to, the ability to get together with friends….. Vic feels distanced from friends who cannot handle the fact that she is going to die soon.

Vic has had many physical and emotional losses which have come before the loss of life itself. Yet she has gained some things too. She is seeking spiritual peace, a new relationship with her God.

Hospice has given Vic Azor for the anxiety. I believe that the drug is allowing Vic the calmness to seek spiritual peace and closure. She is getting her life in order. Over the years we discussed death as a natural extension of life…. Now she is discussing her funeral with me. Psalm 23 ans 1 Cor 13 will be the readings… What I will dress her in… Her pallbearers…

I remember how I cried when I watched the movie Passion of Christ and saw Mary having to stand by, helplessly, whilst her son suffered carrying The Cross… She had to stand by and watch Him die the cruelest of cruel deaths…

Tonight Vic prayed “Dear Lord Jesus, we have not been friends for a long time. Yet I have come to you tonight to ask You to put Your arms around my children and to protect them…”

God please have mercy on my child.

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.

This poignant poem was written by a very gifted poet D.L.McHale. When I read it I wondered if this is what is going through my child’s mind. When you have a spare moment please visit the blog http://dlmchale.com. It will be a worthwhile visit! http://dlmchale.com

The Winter Bites My Bones

My dreams are fermented delusions
A kaleidoscope of meandering falls
Through time and space, while the
Screams of my inflictions penetrate
And annihilate my grip on reality.

My waking hours, of which few remain,
Adds another layer of darkness to an
Already bleak existence, while the light
Of relentless self-reflection blinds me to
Any hope of reprieve or absolution.

I stand with one foot in the grave
And the other hobbled by uncertainty.
I do not fear this final step into the abyss
So much as I dread the act of departure;
The inglorious gasp of a final breath
Inhaling the petrichor of a wasted life.

A silent scream rattles from my gut
Cursing the sun of a new day rising.
I cannot bear another savage stroke
From a Sun that fails to warm me.
Let the final night descend and into
Death’s warm embrace enfold my soul.

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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…..

Hospice counseling….

We met with Alan, the Hospice counselor, today.

On our way to Hospice Jon-Daniel sat with his arms crossed muttering “I don’t need to see anyone” under his breath. “I am like you Oumie. We don’t talk…”

“Yeah” I said. “But I really think the time has come for us to talk to someone. Besides it is part of the Hospice thing. We have to do it!”

“The whole day I was thinking of shrink jokes” Jared said. “Do you think I can ask him ‘how does this make you feel?‘”

We all laughed.

“Guys if we don’t talk to the counselor we may have to come back…. Let’s answer all the questions and get it over and done with….” I cautioned

Alan is a short young man. I think he is in his early thirty’s. We shook hands and he asked us how we wanted to “do it?”

The boys went in on their own. I sat in the waiting room saying a little prayer that they would open up to this professional stranger who is an expert in dealing with death. Thirty minutes later I was invited in.

“The boys tell me they are coping well. They don’t see the reason for seeing me…..What do you think? Are you guys coping?”

I was truly taken aback. “Yes, I think we are coping. ”

“So Tersia, why do you think the boys need to see me?”

I did not speak for a couple of minutes. I was grappling with my brain as to how much I should tell this stranger.

“I think the emotional roller coaster is getting to us. We have said our goodbyes so many times and Vic always bounces back!” I eventually said.

“Yes, Jon-Daniel said so” Alan replied.

“I worry that the boys live in a home where death lingers. There is not enough laughter in our home. It saddens me when they stand next to their Mom’s bed and I see the helplessness in their eyes!” I mused

“I get impatient with Vic. When she has half a breath she will organize a party. When the pain medication works she will not pace herself. She will hurt herself and then I have to pick up the pieces. Sometimes I am scared that her suffering will not end. ” I continued.

“What type of party will she organize?” Alan asked.

The boys and I laughed!

“It is only a figure of speech….” we explained. “She will try and do things with the boys and hurt herself.”

“What type of things?” Alan asked

“Drive and take us for a milkshake” Jared replied.

“It is not about the final moments. It is not the final words or even the final disagreement. It is about the life and all the years of loving before death and dying…. You must not ever blame yourself for anything. Life is hard for all of you right now. It is okay to be scared and to get irritated. You must tell your Mom how you feel. I am not saying you must back-chat. What I am saying is that you must tell your Mom how her actions and illness makes you feel. The household consists of more than one person…. You all have the right to living…”

The boys asked to see Alan for another session…. Thank you God for another angel!

Mommy, I thought I had more time….

“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”

–Dame Cicely Saunders

Mommy, I thought I had more time…..

Is there pain after death?

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