Our Plan if We Contract the Virus

Our Plan if We Contract the Virus

After much pondering over the fact that my husband and I are in our ’70s and the fact that I live with two incurable conditions, it would appear that the medical support we might need if stricken with this virus will probably not be available to us. We understand the reality is if we contract COVID-19, that we will be the one’s doctors and nurses will have to make that horrible decision about trying to save our lives. They will have to put us at the bottom of their list of priorities and use medical equipment and man time to save the younger ones. From what we are reading, this decision is weighing on them and certainly not how they expected to be practicing medicine. But we have no alternative other than to face these tragic circumstances along with the rest of those in our age bracket. This is our new reality and it cannot be avoided… our new norm and reality our world is facing.

So to our four sons, daughters-in-law, five grandchildren, family, and friends, please accept our decision. We have chosen to take on this virus at home together. If one of us contracts it, we will stay here in our cozy home and take care of each other the best we are able, knowing the other will contract it too. We will share my Bi-pap SV Advanced that is like a home respirator and use my oxygen tank if needed. We understand this will only help to an extent and there is a good chance we will lose our lives. But we choose to be at home and together. To be sent to a hospital, we would get separated, possibly permanently and be alone in what could prove to be the final hours of our lives.

Some of you that are healthier may never understand these words and decisions, but I am guessing many of you reading at this site, will understand. I am not safe in a hospital. I rarely get food that accommodates my sensitivities and many times I am medicated with something that the DNA testing shows I can’t metabolize. People mean well but even without a crisis like this, I have found it best to stay away from a hospital with a more complicated condition. I even have had my hip dislocated by being transferred onto the bed from the ambulance stretcher. Thus, I can’t rely on medical professionals to treat me appropriately or safely. I am at risk in a hospital setting.

So, why would I want to pick the possible ending of life to be:

  • Not able to get the help I need to maintain my life due to my age and medical complications in a hospital. I have no desire to end my life feeling unworthy and irrelevant.
  • Not be able to count on the appropriate medication being put into my body
  • Not be able, most likely, to eat safe food.
  • And most importantly, not be able to be with the man I love and possibly end our years apart, not being able to comfort each other.

We are at peace with our decision. We always talked when first married, that we would love to leave this world together. The thought of one left behind has always felt so overwhelming. I guess this decision puts us back into that mode from the beginning of our marriage, over forty-six years ago. We vote to be together, take care of each other and accept that we are the vulnerable ones who have decided not to subject ourselves to the horror going to a hospital that could not provide adequate care and comfort.

I wish you luck as you, too, ponder these decisions that we need to contemplate. To those who are younger, may you get the help you are being told you are entitled to if you contract this virus. And those older and with compromised health issues, may you find your peace for whatever you decide. It is not a time to judge each other but to respect and support each other any way we can.

May life be kind to you,

Ellen Lenox Smith

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

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/

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Margie

Doctor on fox news said the coronavirus will become seasonal just like any other flu. Why on earth didn’t our government put in testing at airports since the time of when the first case of sarz or Ebola. My thought is this is weaponized war. Just as they had redo security at airports do to ISIS, we now have to start continuing testing for virus at airports forever. Because travel and shipping cause Contamination. Will we in the future have to deal with on going Ebola now that our future is now changed forever dealing with new strains of coronavirus coming from other countries? The first responders from 911 that haven’t died from what they inhaled/cancer are still waiting on care/ payment for saving lives. Our veterans are still not having needs meant. USA future is turning into a 3rd world country. We in chronic pain should now turn are focus on protecting our country by demanding more security at Entry into our country because all our lives are at stake. Let’s write our senators about that and this time they will listen.

Heather

We’re not at overwhelm capacity yet, so please consider that. You may be making your decision prematurely. Medication is also now becoming available. It may not be your time yet. I am 40 years old with asthma and I wait, hopefully I will continue to wait with you and we will see each other and the other end of all of this.

May we all reunite, still in this world.

Marvin

G-d bless u both

E R

Totally agree. I already discussed with my parents that should I get sick, I will let them know, but I do not want to go to the hospital. I know they will not ethically treat my pain, and I just can’t go through that kind of hell. I would rather die in my home, if it comes to that. I have had a DNR in place for years now, and do not wish to ever be put on life support. They understand, even though it breaks their hearts. I’m still young, but I have suffered my entire life, and for the past several years, I have been denied ethical pain relief. I’ve been tortured enough. I’m not afraid to die, I have peace with where I am going, and I am looking forward to Eternity. When my time comes–whether it’s COVID-19, or something else, I want to pass from this life to the next as peacefully as I can.

Thank you for sharing your plans and the thought process that went into them. End of life decisions are important at any stage of life and this COVID-19 crisis reminds us to put our wishes into our Advance Health Care Directives and talk to our families about them. Selecting a healthcare proxy who is willing and able to advocate on your behalf if you are not able to voice your wishes is also important. At some stage a POLST order signed by a doctor may be required.

Wishing you well, and pray that your isolation practices mean you never have to implement your plan.

Here are some resources for those who do not have the paperwork or family discussions in place or who are only beginning to think about their wishes for end of life care.
https://theconversationproject.org/
https://familydoctor.org/advance-directives-and-do-not-resuscitate-orders/

Dale

Some five or six years ago I read an article in the Atlantic by Dr Ezekiel Emanuel titled
Why I Hope to Die at 75, An argument that society and families-and you- will be better off if nature takes its course swiftly and promptly. It just made so much sense to me that I decided that I would let nature take its course for me, if I lived that long. I made copies of the article and gave them to my adult children. None of them doubt my resolve as we have had many
discussions about what I consider the massive waste of health dollars spent on the elderly, especially in the last six months. ( I know touchy subject )

After living in chronic pain for the last 17 years, I’m fortunate that my doctor is still prescribing
my pain medication, although I was started on a forced taper being told 10mg reduction per
month for the next 4 months. For reasons unknown to me the tapering was stopped after one month, for which I am thankful. My next hurdle on that front will be finding a new Doctor, as
mine is retiring this August, and not one at the clinic will write script for pain.

Anyway, my wife of 45 years and I have self isolated ourselves hoping that we too will be
able to ride this out with a well stocked pantry, freezer and plenty of chow for our 2 Labs.
If somehow we should come down with Covid-19 well I guess nature may will take its course a
little early. The article is an interesting read, the comments even better. Put your Google to
use, and stay safe.

Dana Wirth

Your decision makes me angry, not for what it is, but because you are forced to make it at all. Why are we so unprepared and why does our great country have such a sadly dysfunctional medical system that it cannot accommodate its citizens in their time of need and is asking its dedicated workers to put their own lives at risk? My medications were delivered today by a young man who had no mask or gloves still doing his job. Thank you Raynaldo.

I am 76, live alone with my two precious companion cats. Shelter in place is my standard procedure, the only thing that changed is I can’t find toilet paper anywhere . A friend takes me shopping the first of the month and I understand my local Wal-Mart has a lot of empty shelves and the last time I shopped was March 03. I could not buy extra supplies even if I wanted because I live on poverty level social security. Amazon is delivering toilet paper by May 05, and I have checked other places without any luck. What has happened to us? How fast we forget we are a civilized (?) people. Rationing should have been in place to save us from ourselves.

I am glad you have each other but I still feel it is very wrong that you have been forced to make the decision you have when if planning began when warnings were first given months ago, these thoughts would never have entered your minds because we would have been ready.
Best of luck to you.. I hope you are stocked up with everything you need to make your days as pleasant as possible.

Sherrie Stone

Crying while reading this i believe the world we all have lived in the way of life we have lived is now over gone forever and we that make it thru will have to live with the new normal i have a strong faith in God and i know ultimately he is in control ,i understand your decision and i like you choose the same decision im 60 with a compromised immune system as well with several chronic extremely painful diseases ,Prayers for us all because we are all warriors ,God bless you and am asking God to surround you with his protective hedge.Much love and prayers

Christine Sparks

I wholeheartedly understand and support your decision. I plan to do the same. I wish and pray for the very best outcome for you both, as well as for all those reading these words. Connecting with all of you means very much to me. Be well and be very blessed.

I’m with you. Thanks, great plan. I believe that karate is needed. Indeed, in our time such a virus did not exist yet. Many media and information portals make advertising out of this situation, which creates excitement and panic. I want this situation to be resolved as soon as possible. Good luck!

Heidi, Seattle WA

Ellen & Stuart, I so totally respect your decision to stay at home during this virus crisis, no matter what comes to pass for you. I hope and pray that your self-isolation will keep you from contracting this virus. However, please speak to your doctors as to whether or not the hydroxycloroquine / zithromax combo may be helpful, not harmful to you, and not interfere with your other medications. If, as I am hearing from multiple sources, this combination of meds can treat this virus for almost ALL who are given them, and you can remain at home during treatment, please try! You are such an important voice for the CPP community, we would be heartbroken to loose either of you!
Our prayers to keep you, as well as all CPP’S whose bodies cannot take anymore, safe from this virus are being sent out far & wide!

Ellen, you have echoed my feelings regarding the health care system. What a great article. I’ve discussed my feelings to my husband that if I should get the virus, I do wish no heroics. If I should live through the illness, I can just imagine I would be in worse condition than before. Oh,no. Life as it is now is horrible with Arachnoiditis plus a list of others diagnoses and be left with lung issues. Look, I’m not a pessimist. I’m an R.N, MA (or was) so I do know the scenario. I just can’t do it. I wish us all good luck.

Cheryl Kakos

Im so sorry any of this is needed to be said or felt. I do however understand your feelings about it and mostly feel the same. If I didn’t have six year old boys to raise, and young adults with disabilities that still need me, I would do the same. For them, I need to survive this…..

My prayers for safety and health go out to us all, for the best outcome possible. <3

Kris Aaron

My husband and I are doing the same thing and for the same reasons. We both refuse to use a ventilator if it means a younger person would be denied the same life-saving technology. We won’t be taking up a hospital bed that someone else needs. We’ll die at home in each other’s arms knowing we’re doing the right thing for our neighbors and each other.
The only up-side of being older and living with chronic pain is that I’m less fearful of death and less likely to believe the bull$#!% put out by our current administration.

Sue

Thank you for sharing your courageous decision and I wish you and your husband peace and the best of health in the days to come.

Candy P

I respect, understand and totally agree with your decision. I hope it never comes to this. Stay home. Stay safe. Wash your hands. Often. Love each other.

Danny

This is an excellent article. We all need to discuss this with our loved ones and make the necessary choices before we are forced to deal with it. Thank you for this!.

Teresa Ingebrigtsen

Amen! Thank you for being honest and unafraid of others judgement. My husband and I have talked about this also. We are younger, he is healthy, I have chronic conditions. Neither of us are afraid of the virus or even dying for that matter. We are firmly grounded in our faith and know where we will go in the end. But we dont want to be separated and alone. We have agreed. He is part of essential services and is working. If he gets sick he is going to come home, even if that means exposing me, so be it. We will be together. We will deal with whatever comes next. If I get sick, he is going to come home, same thing. We have been married 31 years, I have never loved anyone more than I love him. I see these stories of couples married 70 years separated while one dies, and it tears my heart out, I cant do it. I’m not afraid of dying, I’m not afraid of moving on alone, I trust my God, but I dont want my dear sweet husband to be alone should he need me, or should I need him.
Teresa

Bob

Dear Ellen,
Your words are profound and quite beautiful given the subject. Obviously your husband is also your best friend, as is my wife to me. We have not only discussed in length, but also prayed that our Saviour would take us home together. Either one of us could handle the separation.
Now that we know that Covid-19 was most certainly engineered as a bio weapon, containing HIV and designed to target the elderly and folks like us with compromised immune systems, going to the hospital at this stage would be pointless. Our local hospitals/doctors have shutdown most office visits with the exception of CCP’s who still have some form of pain medication to refill, there is little they can offer if you contract the virus. We are hoping that they will very soon allow for Tele-visitation appointments, but this month I am required to show up in the flesh.
All of us have long endured unimaginable hurdles since the CDC guidelines became de facto law and this new one might be a bit too high to manage.
God bless you and your husband and hope you both survive this. We are after all, in His hands.

Susan

Be well, take care and thank you for sharing. I’m without words but had to say thank you for sharing your choices with us. I for one, do understand your choice. I’m hoping you both stay well.

Jeanie Rhodes

Your article, like your books, is right on. Thank you so much. My brother and I are both long term disabled, just lost our 12 hr/wk caregiver. I am afraid he had a TIA yesterday and is refusing to go to our coronavirus hospital. We are at that point NOW!
Thank you so much for ALL YOU’VE DONE FOR THOUSANDS, IF NOT MILLIONS OF US! I

We are most grateful, as well as heavy users of Medical Marijuana and other suggestions in your Most Outstanding Book!

Gail Honadle

2nd half: I couldn’t stock anything & that’s why I caught in the first place. I had no choice but to go out & pick up medication the other week. “I had no options at all”. I woke up at 4AM not feeling great & woke up a while later feeling like I was hit with a truck.I don’t know if I caught covid-19? I’m in deep if I did. The intensity of pain is off the charts. Now everything’s so MESSED up that I’m going to lose my phone, can’t afford groceries & there’s no financial aid for people like me. This is what they wanted, the elderly, the sick & injured are going to die. I don’t care anymore. They made damn sure I was made to suffer as much as possible & make sure I die. If I make it to the 27th, that’s when I can get a little help but, that’s when the end starts. If you get this your dead, there’s no way out of it. I’ve had pneumonia before & this is it. I’ll keep you updated for as long as I can CANADA WILL LET HIM DIE IN AGONY, ALONE.

Gail Honadle

It is worse in Canada is EVIL. Those who have existing health conditions are being offered Euthanasia. I’ve a Friend in late Stage 3 AA, Adhesive Arachnoiditis. “I sort of collapsed last night & wasn’t sure if I would make it through the night.They have it set up that you need to call 811 & wait for a callback that takes 14 hour’s minimum & you may get screened or wait for another callback that may screen you give direction on what to do. If you show up at the hospital without a prescreen, they won’t look at you. The pain is off the charts, my lungs feel like they’ve been sandpapered, fever, my voice is raspy, fever all over the place & last night, was ready to send out a final post because I wasn’t sure I was going to wake up. I couldn’t breath & I was staggering all over the place. “I just can’t care much about what’s going to happen to me. I figure the pain is going to get so intense it’s going to push me over the edge. I can’t post anything about being sick or I’ll be blacklisted & then I’ll be charged for going anywhere at all.

May the Love of God be a comfort and bring to you two and all of us in similar circumstances peace. Thank you Ellen for your encouragement to us along this path we did not deserve to attempt to live. Without your help who knows we may have not even gotten this far.

Pat Kocsis

I agree with you I don’t want to be on life support either I would rather be at home with my husband then in a hospital
Prayers