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.
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/