Chronic Pain Patient – Learning How to Become a Caregiver

Chronic Pain Patient – Learning How to Become a Caregiver

By Ellen Lenox-Smith.

We never know what life is going to throw our way next! My husband has dedicated the last fourteen years of his life as my caregiver. His life has included such activities like driving me to numerous weekly appointments, lifting items too heavy for me, given my condition, boosting my spirits during twenty-four surgical recoveries, running to the store, pushing me around in a wheelchair outside of the home, along with having to engage in the often stressful process of abandoning future dreams and creating new dreams and goals for our retirement. My conditions, sarcoidosis and ehlers-danlos syndrome, have caused tremendous stress on his life. This kind, compassionate man has been helping me cope with these two presently incurable conditions, but recently, the tables have turned in a different direction.

Ellen Smith

After having to have surgery the past October to fuse his left large toe, he now seems to be heading to needing the same type of fusion on the other toe. The stress added to his emotions is that this will mean no driving for weeks and thus adding to his concern in making the decision.  What would he/we do if I had a medical emergency during his recovery? It breaks my heart that the surgery would return his life back to no pain, comfortable walking and a better future, but my issues are holding back his decision for the needed surgery, in his mind. That just breaks my heart that my conditions are causing this hesitancy to do what is needed to be done to improve the quality of his life.

So, I am now experiencing the tables being turned. The question is how can I help to ease his concerns and help my caregiver be more comfortable to take care of his needs, too? What can I, the person that has been taken care of by him, do to let him feel the same level of support that he has generously given to me all these years?

A few things immediately come to mind that he has shown me, that I hope will help him:

  • I need to be as positive and reassuring as I can be with him.

  • I need to be willing to know my limits and ask for or hire help when things are beyond my capacity, to prevent any backward spiral of my medical conditions.

  • I need to accept and show  him that we can both just deal with more quiet, less active times during recuperation and not show any resentment with those changes.

  • The most calming and supportive line I have heard him say over and over to me through the years is: “Whatever happens, we will get through this together”. And we will, for I need to make sure he knows that whatever obstacles come our way, that we will find a way to  approach solutions together, as he has shown me in the process of facing my long standing medical issues.

It breaks my heart that decisions that are necessary to improve the quality of his life, at times get postponed and sometimes even put to the wayside due to my health issues that we have confronted for more than a decade. Together my husband and I have accepted the challegenes my medical conditions have presented. I believe that we have achieved some success in not allowing my health conditions to shape and define our lives. I need to make a similar effort not to allow my medical conditions to define my husbands life.  My husband, my caregiver, needs to have the same chance to help himself and maintain a healthy quality of life as he has always helped me to achieve. I hope I will be able to have him feel from me, the support and love he has always given me through our medical trials. That is the least I can do for him.

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.

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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Authored by: Ellen Lenox Smith

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Barbara Snow

Dear Ellen, I am also on pain meds for all kinds of conditions, and I am also a caregiver to my father-in-law. My mother -in-laws passed this past January. And now he is needing more help. This past 2 years have been difficult, but I’m eeking my way through it. One day at a time. I know you can be strong enough to do it. And do know your limitations and make some calls for the kind of help you need. Some days I have a hard time cooking, so I buy frozen meals, their getting better. You can do it , I have faith in you. May you be blessed with with strengh, and cry when you need to. 🙏

Caregiver 24/7/365

Ellen, I thank you for this thoughtful and empathetic expression. Some thoughts for those who are in my situation may “ring true” for some (not all, I realize)

I am 50 years into marriage and now several years into caregiving after an horrendous in-home accident put my wife into a coma for 2+ weeks before two spinal reconstruction surgeries could be done with more to follow. The aftereffects are what many of you will recognize in terms of life-altering and unrelenting pain. The central nervous system is getting even for what Mary’s gifted neurosurgeon was required to do to have her regain usage of the arms. legs, neck, and be able to swallow after many weeks.

My retirement years are not what I expected they would be. No images of a couple on the beach, at a play/concert/fundraising gala, on an exotic trip to some place with a server asking “can I freshen your martini, sir?” Or visiting every ballpark. Nope, none of that. Not even time anymore at our second home in the South where we snowbirded for a few years before “the bathroom fall that changed everything”.

I’m not sure, now that I think about it, that the now-unattainble “screw it, I’m gonna just do MY thing” life would have been the thing for me anyway. My former life as a workaholic businessperson and owner, was “right for me” — fulfilling, interesting, never lacking in challenges and unforeseen hurdles and barriers. Exhausting at times, but always engaging. Lots of psychic income from jobs well done and appreciative clients.

I’m not an ‘it’s God’s plan” person, or an “everything happens for a reason” guy. But what I DO know is that some of us when given a challenge, feel adrenaline stir and focus on the task(s) at hand. I really don’t know any other way to approach life, so I am STILL in my element now, today, as a caregiver. I just changed the costume (no more ties and suits) and changed my “headquarters” (office and airports) to dining room, kitchen, den, and the car for local errands etc.

I’m still a workaholic, but working on the assignment I took on 50+ years ago with words like “in sickness and health”, “til death do us part”… now and forever. Not boring, not relaxing, but very fulfilling in a way. Used to work 55-70 hours a week in my business life. I was in training for this job, I now realize

Jessica Reible

I understand your predicament. I’m sorry for the years of chronic pain you have felt. It is very difficult!

Your husband is truly a prize! The job of a caretaker can really take a toll & often it leads to frustration and resentment. He sounds like a real upstanding man to put you in front of his own needs/pain.

I found myself in a similar situation a few years back. I was having surgery after surgery & recovering for months. My husband took care of me & worked our business without me, took care of the kids & the house. Until he had severe stomach pain & had to have emergency surgery to have part of his intestines taken out. Suddenly the roles were reversed. I had more on my plate than I could handle, which put me into a 3 month pain flare.

There were signs that my husband wasn’t feeling great…but he ignored it due to how busy he was. I often wonder if he would have stopped & taken care of himself sooner, if he could have avoided the emergency surgery that could have caused him to die? It causes me some guilt to know that he took care of me before himself. Also, that some conditions can get worse and cause more damage to different areas by avoiding them or waiting too long. It did make things a lot worse down the line for myself & my husband. Lesson learned.

I hope that your husband takes time to care for himself & you. Without him being well, it’s difficult for him to be his best.

I so hope you both the best of everything. It is very difficult right now to even want surgery, due to the decrease in pain medication afterwards. My last surgery, which was major… I was allowed 1 – 5 mg oxycodone per day for 3 days. That was it. It was extremely difficult to cope. I had 2 huge incisions that we very painful for about 3 weeks. I was told to use ice & tylenol. I’m allergic a NSAIDS. My recovery was 12 wks. with no work or any sort of activity. At this point, I refuse to do any other surgeries. I will not sit in pain for weeks on end while recovering.

I wish both of you luck!

Rose

I completely understand this. I have a lot of difficulty standing and walking after an accident in 2006 left me with many broken bones and multiple surgeries and complications from abdominal injuries and bone grafts. My husband also had leukaemia in 2005, and now after three separate rounds of chemo over the last 11 years, it seems that the cells have changed and become more agressive. It can be overwhelming to think that our lives are now in such a place where we are just hoping that we can be there for each other, without having our children bury us both within the next few years. Some nights I feel pretty sorry for myself, but for the most part, I try like hell to love the days and the nights, and be there for my family. I want to just continue to do what I can, and be here as long as I can. I hope you can continue to be as strong as possible and to know that you are helping many people as they read your experiences and relating ….thank you for your help along the way…
Sincerely,
RM

Barbara

Having a kind and compassionate spouse can make all the difference. My husband is always there for me, good times and bad. I would be lost without him. I can not imagine facing my troubles alone. I thank God for him every day. I am truly blessed.

Belinda Cartier

Ladies, thank you all for such stories of true love & commitment! Your stories all touch me & inspire happiness in my heart!
I’m alone, CPP & taking care of my precious mother on Hospice Care in our home.
I’m so sorry for your husband’s health. I wish you more love, life & happiness as you go forward with your spouse with tender love & care.
I hope my message of how blessed you are to know such love is a huge gift in itself.
May I inspire you as you have inspired & given me a smile in my heart…for each of you & all of us!
You’ll all be alright….❤️

Maureen M.

Dear Ellen, I am so sorry to hear of the added stress for you both.
BUT… Your immediate thoughts were my immediate thoughts. You will manage. And this too shall pass. And I know it is not easy but… God willing nothing will be too great to get in your way. You are a strong couple… One day at a time and keep strong, positive and focused on the end result. There are answers to your issues. Life is not always an easy road to travel. So, Hang in there beautiful warrior!
I too had been thrown curves balls as of recent weeks. Aside from my chronic complicated spine injury related pain issues, I have been diagnosed with lupus plus I was told this week that I have just 5 wks to move out of the rented home I live in.My landlords want to move back in here 🙁
I live alone and have little support ever so where will I go? What new rent can I afford? How will I do it all? How will the Lupus effect my ill body through this stress?! I’m mega exhausted just thinking about it.
So, I too am in another world of dealing with stressful issues.
But, I do my best to keep positive and know… That this too shall pass.
God help us all. Maureen

Gretchen

Good luck too the author I totally understand I’ve carried disabilities since I was 40 now 57 in that time my disabilities have upstepted my husband of 34 years supported me now he has RA and I’m needing too support him you sound like a very strong person you will achieve your goals the fact that you are a survivor of your health is not a coincidence I know it has been hard for me I take one day at a time as too not feel overwhelmed I pray too God to help me with the things I am not comfortable with and don’t think are possible I had too learn something you already pointed out and that’s too hire someone too do things for you If it came down too it God Bless You and your husband you got this Thanks for sharing your input helped me

Bruce Stewart

You can get a handicapped van service to pick you up and take you to your appointments. You can get vouchers from the county/state. What’s the big deal? Are you going to keep the man in pain because you can’t figure out a ride? Sorry, no patience with people who have someone to care for them. My selfish girlfriend split a long time ago, it’s just me and the cat. And he’s no help at all.

Alanna Wilgus

You are so lucky. My husband never lifts a finger to help me. He will just sit there while I try to do activities that cause me so much pain that I am sobbing. He is truly a heartless jerk.

Nancy

God has been showing me lately that there are those who take their marriage vows very seriously. My father is one example. He stood by my mom despite the aneurysm that burst in her brain, triggering a 3 month stretch in a coma, a stroke, and triggered the beginning of Alzheimer’s in her. For 10 years he stood by her side, navigating a ‘landscape’ that was so much different than what they had both envisioned when they married. Now I read your wonderful testimony about your husband’s care for you. I am humbled to be given such good examples of married love and God’s love. Thank you.

arlene crandall

I too found myself in your situation about 3 years ago. My husband took care of me through 5 orthopedic surgeries in 5 years. He drove me to my for doctors appointments and physical therapy. He helped me with household chores and many other things. In 2015, he was diagnosed with Stage 3 kidney disease and was found to have an enlarged prostate. The next year a sonogram showed a tumor in his bladder. He was found to have bladder and prostate cancer. He had surgery for the bladder cancer and his prostate cancer is a slow growing type.
At the beginning of 2017, he started immunotherapy for his bladder cancer. About halfway through the treatments, he had a stroke. He finished the treatments and was referred to a neurologist for the stroke. We met with the neuro doctor and he immediately noticed my husband’s gait and body stiffness. He then was diagnosed with Parkinson’s Disease and dementia of some type. It has been hard to go from the one who needed help to the one that does the help. I am in no way as ill as you, but I do face some major spinal issues and fibromyalgia. Luckily my husband is mobile because I am not able to lift him. We don’t go places very often, we had to get help with our acreage and housekeeping. It was hard to convince him to get help, but thankfully it has worked out wonderfully. We are currently trying to get our house ready to sell and have found a new home an hour closer to our doctors. Next month we will move. This will make our life a lot easier and simpler. Please have patience and ask for help, it was the best thing we have ever done.

Jan Thomas

Ellen, you and your husband are much like my husband and me. We are fortunate that our son lives only two hours away and I have family that I can call on when I need to. Two years ago when my husband had kidney cancer, our son came and took his dad to the hospital and stayed two days while his dad had surgery. Fortunately, no treatments were required and my husband is fine. I just will not allow my husband to not take care of his health issues because of me. I would go in a nursing home temporarily if required. He is to good to me for me to be a roadblock to his continued good health. We are missing out on so many things we had planned. We don’t need to miss out on anything else!

Diana

“Whatever happens, we will get through this together”.
I am guessing this will hit thousands and thousands of people who live in chronic pain who not only live in this terrible pain but have no one to help.