Remember the Movie – They Shoot Horses, Don’t They?

Remember the Movie – They Shoot Horses, Don’t They?

By Ellen Lenox Smith.

Recently, I watched a friend wait as her father in law’s life slowly came to closure. Hope was all gone for healing and it became clear the end was inevitable. The process he went through was extremely painful and thus heartbreaking for him, their family and friends. It was so difficult to care about someone and not able to help alleviate the pain and loss a dying person experiences. You want to comfort and alleviate the pain, but that isn’t always possible.

As I listened, talked and cared about her in this process, I couldn’t help but think about my own immortality. Living with two incurable conditions, I know there is a good chance that life will come to closure sooner than most my age. Numerous times, I have had breathing episodes that leave me temporarily catatonic. The horror these episodes have placed on my family is just heartbreaking. I don’t want to make them nervous about my safety, my future and concerns that life will suddenly take that turn of no return.

Watching them enter him into Hospice at home, I thought about if this would ever even be an option for me. A few years ago, before having neck fusion, when my life was on the line, my doctor attempted to get me into the Hospice program. However, I could not accept the use of the requirement of only using their physical therapist. With Ehlers-Danlos Syndrome, manual physical therapy is the safe way for helping the subluxations, which is not the type of physical therapy brought into your home. I have already had two surgical repairs from mistakes and a more aggressive approach used with a regular PT. So, due to this, I failed hospice and then also palliative care, for the same reason. I could not agree to use a PT without them having the understanding on how to safely help me. That, itself, could create serious added health issues. So here I was, unable to be provided the comfort and care like others, but fortunately, the two neck surgeries have given me a much safer lease on life.

How sad it is to have to have those obstacles living with a rare and misunderstood condition, all the way to the ending of life. Due to not being able to metabolize any opiate, I will not be able to use morphine, the common medication used to ease the pain and help with the transition for the dying patient when involved with Hospice. Both of my parents had peaceful endings due to Hospice and morphine that was administered. When my time comes closer, this will not be an option, for being reactive to morphine would not help but instead cause reactions. So, will they be willing and be allowed to help me with one of the two only pain medications my body can metabolize – ketamine and cannabis, both still considered controversial by many? And if not, where will this leave me? The thought that this battle of understanding and finding compassion will potentially continue until the end of life is a bit heartbreaking and unnerving.

This recent experience made my mind drift back to a movie that mesmerized me when I was younger, called: They Shoot Horses, Don’t They? The theme dealt with how we are able to make that heartbreaking decision to put an animal down when suffering is to the point that there is no quality of life left and no more hope. But what about us? What can we do to offer ourselves hope for a peaceful transition? It is heartbreaking to watch people having to suffer, some very intensely, as the days go by with this difficult process. We all have to learn to find our peace with the process of closure of life and be grateful when one is able to transition peacefully.

              Life is a Balance of holding on and letting go

– Rumi –

Via (The Minds Journal)

May life be kind to you.

Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

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A. MacKenzie

Ellen, I sympathize with your concerns about lack of pain control and I wish you the best. However, I feel compelled to give a different perspective on hospice, based on my own experience with my 92-year-old mother, also named Ellen.

My mother had dementia but NO diagnosis of any incurable, untreatable illness at any point in time. A deceitful palliative care doctor at a North Idaho hospital got my mother “qualified” for hospice based on weight loss (minor). I only wanted to take her home after a brief admission for observation and purportedly to continue to assist her with constipation. I declined to put my mother into hospice; unfortunately, the hospital then called another family member – not her power of attorney or caregiver – who also believed the palliative care doctor’s lies that my mother would continue to be assisted with relieving the constipation and receive help getting her pain control right (a buprenorphine patch). He also used the hook of me getting “respite” – appealing to my self interest (which I declined).

After admission to the hospice facility, I was shocked to learn that they were doing nothing to assist my mother with constipation and had put her on their “protocol” of regular doses of morphine and a sedative, putting her into a coma-like state. They had no intention of following what the doctor indicated in terms of helping her find the proper dosage of buprenorphine for pain control. In response to my concerns, I was barraged and hassled by the nurses stating that they had to follow their protocol and my mother was DYING and they knew better and I just had to accept it. I later found out this palliative care doctor was on the staff of the facility.

After rescuing my mother from this facility, she unfortunately developed a c difficile infection and had to return to this same hospital where I was again badgered, by yet another doctor, that my mother was DYING and I just needed to accept that fact. Upon discharge, the hospital forced her onto the hospice arm of her in-home health agency. They cut off all options for her to go to a skilled nursing facility.

My mother died within a couple weeks, I believe from dehydration and sepsis due to an untreated infection. Hospice should be a CHOICE, not a mandate, and hospice needs to be required to inform people of exactly what they require, including that you can no longer treat any treatable condition such as an infection.

F.S.T.

What a beautiful piece written from the heart. Tears are making their way down my cheeks. One of them dangled precipitously from the end of my nose, finally making a big plop on my phone screen. The screen needed a little cleaning anyway, salty or no.

The suffering your friend’s dad endured — and your suffering as you watched them almost helplessly — was that because of the frivolous state of the “opioid crisis” that we’ve all loved to hate? Are dying patients being subjected to the shortsightedness that we other pain patients with longer life expectancies are having to endure? Are the doctors and laypersons in the bureaucracy that caused all this increased pain saying “Oh, by all means withhold pain relief from this man! He’s actively in the dying process and has only a few hours, maybe a day, to live. *We certainly can’t have him addicted, now can we?*

I’ll leave you with those last words to meditate over; to ponder; to roll them around in your head for a while; to sift, to break open and search for a common-sense meaning, or any meaning at all.

You won’t find it. It’s not there. This is where we are, what we’ve come to. The science of Medicine is predicated on the one thing, the only thing that doctors can do. Relieve the pain. Death with dignity is over. Dying with unrelenting, indescribably cruel pain is “in.” Withholding is “in.” Refusal to and of comfort is “in.”

The object is no longer to face death on our own terms. It’s mandated, categorically statute-ized, that we are to be in agony during the dying process. And watch the families’ hearts break because of it. As if they weren’t breaking already due to impending loss.

There are many in the bureaucracy to thank for this. We’ve written, called, and emailed our local, State, and Federal lawmakers. Oh, one particularly cold staff member was audibly irritated. She said, “Pain never killed anyone. No one has ever died from pain.”

While you roll THAT statement over and dissect it, understand that people in pain are committing suicide in record numbers. Hope is being trounced upon, and many lose it. But please, please try to hang on. Our Lord is aware. Continue to bring it before His mighty throne. Amen.

Shrek

How do you feel about cannibus?

Maureen M.

Hi Ellen, I’m so sorry for all that you have endured. Having been a hospice nurse before my injury, I cannot believe they wouldn’t accept you just because of your previous poor experiences with PT.
Also, many folks use MJ for end of life. Not all can tolerate other drugs either.
I’m wondering if you have begun your move yet?
Best of all! Maureen M.

Lori T.

Excellent post Ellen. These days no one seems to care how another person suffers during the final days of life. I have read many good articles and studies on the use of ketamine for chronic pain patients, whether one is just living day to day or for palliative care during the final months and days. I have seen it used a handful of times during my nursing career of 35 years. Many doctors don’t even know how to use it. Many are afraid. This is a shame on the medical community as a whole as I know it can be an excellent option for many who cannot take opiates. And in today’s political climate with opiates I feel doubtful that guidelines will be even made for the use of ketamine. I hope I am wrong. Heck, the FDA, CDC and NIH can’t even get on board with the legalization of marijuana in all states, so it gives me pause with the use of ketamine on a larger scale benefit to many people suffering in silence. It is truly a travesty that you could not get on hospice because you had to use “their” P.T. What’s wrong with this picture? Our healthcare in this country is in shambles and our Dear Leader is gutting Medicare and Medicaid. In my opinion this whole mess is being caused by a whitehouse who is bent on stripping everything the previous president tried to fix, just because he is black and the fact that he doesn’t want to spend money on the people. I have Crohn’s Disease. I have made the decision to take matters into my own hands should my disease progress into bowel cancer or some other disease that rears its ugly head which would doom me. I hate the thought of suicide. I would prefer to live. Just not in intolerable pain. It does give me a sense of peace however, knowing that I can transition on my own, when things get to be so bad and there would only be 90 MME of morphine to help deal with the pain. I know this approach is not for everyone, but it is right for me in this current climate with opiates. So if and until things change for the better on many fronts regarding the chronically ill, I will enjoy what time I have, try to take care of this old body until I just can’t do it anymore. Your article was very thought provoking, heartbreaking yet shines the light on the story of the chronic pain patient. Thank you for your insights and may you have all the blessings in life going forward.

Alex

Ellen, I here you. I’M 70 years old and have CRPS cold type Stage 2. I was given a ” very poor prognosis” in 2013 and continue to defy all the odds. Through shere determination and an over abundance of bio feedback I reversed 75% of the atrophy in my extremeties to the point where I left my wheelchair and actually work a full time job which requires me to walk 1 to 3 miles a day. I do take a small dose of morphine 2x a day along with a couple other meds. My daily pain level is way up in the mis 40’s on the McGill scale. I think about how my life wil grind to a halt every time my head hits the pillow.
How do I even start that discussion with my family. They have watched me suffer, they have tried to understand. Bottom line? Unless you have experienced this kind of grating knawing unrelenting pain you cannot wrap your head around it. So how do I explain to them that a time will come – and it gets closer every day – when I will have had enough. I have not the slightest doubt that will happen. It’s hard to breath, it hurts to assume any position but I keep it up. I laugh, I work, I enjoy my hobbies but with each passing day that light is dimming. And no one understands that we do put beloved animals down. They DO shoot horses, don’t they.

Very well put Miss Ellen. Indeed it’s a tragedy to watch so many people suffer especially knowing something can be done and due to ignorance it seems as though life has come to a standstill for millions. You seem to be such a lovely lady considering everything you’ve been through. You’re very blessed to have a loving husband and family. Many of us are completely alone and have no one here on earth anyway. When your time comes surely you won’t have to suffer. I know in this mist of trouble we have to rely on God above. He could very well take us in our sleep so we don’t have to lay and suffer. It’s the now part that concerns me for all of us. Many already talking about suicide, so many that have already takin their lives, all so very needlessly when something can be done about it but the government refuses to budge along with a lot of other folks. Sounds to me like God has a purpose for you in this world for he has kept you alive this long. Just like myself I should have been dead several times by now but it just wasn’t my time. I pray he continue to give you peace and comfort along with the rest of us in trying to keep on keeping on under all of the unfair circumstances. As someone stated not long ago, we are just sick people who have been ignored and abandoned. They may here on earth but God and Jesus never will. There are days I have to remind myself that he will never put more on us than we can possibly bear even though sometimes it seems like it. Try to keep your faith and thank you for a beautiful story..

Susan L.

Having just put down my beloved Pig (my French bulldog who was my near-constant companion of 14 years) and being the primary caregiver to my even- more-beloved husband of 27 years, this article touched my heart.

Thank you, and God bless. May you have whatever you need in your last days, whether the end comes sooner or later.

Mary

Ellen, a well written piece. I feel for you!

Can your oncologist prescribe some other opiate? Such as Hydromorphone (more powerful than morphine)? Or Fentanyl patch? There are ways to titrate other Rx medications. Hydromorphone can be administered IV or by oral means. Please discuss alternatives with your specialist!

Truly I feel for you! I just learned that I have a mass in my right breast and will be going through a painful biopsy this week. I would be the 6th person in my family (my father’s line) if diagnosed with a malignant mass in my right breast.

God bless you! Do ask your specialists!