A forum member on my FB group, Medical Musings with Friends, posted an “open letter” that her husband recently wrote. It is so moving for anyone who is the primary caregiver for their loved one. I thank Him for giving me permission to publish it.
To Whom It May Concern
My wife was recently placed on long-term disability from work due to a string of illnesses – including lupus, shortness of breath, and heart problems. Her body temperature control is broken making her hot a lot of the time.
What has followed is over a year of chronic physical pain, sometimes keeping Her bound to her bed for the day. As her primary caregiver, I had the feeling of helplessness when I realized that her conditions simply wouldn’t go away.
According to the Canadian Public Health Agency, over half of Canadians deal with chronic illness and the majority of the population have at least one factor that puts them at risk for chronic disease. For married individuals suffering with chronic illness, their spouse becomes the primary caregiver, homemaker and breadwinner. More often than not, though, all the caregiving spouse can do is be present and just wait by their loved one’s side.
Because things don’t disappear within a few days, it gives me time to exercise my ‘coping muscles’ every day, knowing that, apart from a miracle, things are never going to change. As my wife’s primary caregiver I understand the importance of compartmentalizing my emotions surrounding Her health so that I can best serve her needs. I’ve been crippled emotionally thinking about how she is feeling.
We try not to let Her illnesses rule our home lives too much, it’s not uncommon for resentment to grow in marriage relationships where one spouse is suffering from chronic illness. Spousal caregiving has physical implications as well. A report from the Canadian Academy of Health Sciences claims that caring for chronically ill loved ones also impacts the health of the caregivers themselves, including low immune systems, slow wound healing and high blood pressure. People overestimate their abilities and underestimate their stress levels. It’s recommended that care-giving spouses have regular medical checkups, specifically regarding their cortisol levels so as to ensure they have enough energy to administer care to their spouse and themselves. If your cortisol levels are too high, you’re going to burn out.
Support groups and counselling, are invaluable examples of self-care for the care-giving spouse. Regular support groups are very practical. When people can address these emotions in a safe place, it helps mitigate any resentment.
The journey to healing has largely been due to accepting that you can’t change the circumstances. In order to be in control, I had to relinquish the control I thought I had over the situation. It took a lot of the pressure off, realizing that, in any case, marriage requires giving all you can possibly give – even if your spouse doesn’t feel able to offer as much in return.
The sooner one learns marriage is not 50/50 but rather 100/100, the easier things will be. I didn’t commit to being a husband for my wife only 50 per cent of the time. I promised I would be there whenever she needed me and not only when it suited me.
Still, that doesn’t always make it easy.
Each morning, the first thought that goes through my head is, how bad is my wife’s pain today?
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women
My Medical Musings 
Sam, Thank you for sharing. It is certainly a challenge adding a chronic illness to a relationship.
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Thanks Marla. They are an inspirational couple and it’s an honour that they were happy for me to share the letter. 💞
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found out I was sick sept 28 2020 just a few days after I turned 27.
That morning I woke up and from the moment I opened my eyes I knew something wasn’t right.
I wasn’t in pain I wasn’t scared I was sure it was just a lack of water or maybe low blood sugar.
But my vision was blurred and my left side was completely numb and tingling. And I felt incredibly week.
Somehow I still managed to get my son and daughter on the bus in time.
But this time this story isn’t about me.
It’s about the incredible man I call my husband.
At this time we had only been married for a year and a little bit.
We had been in a relationship for 4 years at the time with 3 small children.
I called him the morning of the the 28th and said something was wrong.
I ran a bath and he said he would be home shortly.
I sat in that bath and cried at this point my left side had stopped worked by entirely.
He came home to find me that way.
I told him I knew the prognosis was probably not great.
And I told him then at that moment if I were sick and it were to be a life long illness that I wanted him to leave me.
He absolutely wouldn’t hear it not for a moment.
We sat in doctors office where we were told to go to the emergency ASAP or call a ambulance.
I insisted he drove me, I waited in the hospital emergency department for hours alone as the pandemic was in full swing.
Finally after every test imaginable we found out it was ms.
My brain was covered in lesions.
They wouldn’t let even tell my husband in person but I didn’t listen I rolled myself out into the parking lot bawling and told him.
And then I said I wanted a divorce.
Not the best thing to say.
But he said no.
I begged him because it wasn’t fair he didn’t need to be my caregiver he needed a wife not a woman he had to help bathe and take to the Washroom, a wife that is always tired and can’t keep up with the 3 kids 2 dogs and house work.
He deserves to be spoiled and have the life we had planned one full of adventures and full of life.
Not a debilitating illness holding him back that illness being his wife.
While I was in the hospital my husband was a superhero he did all the work at home cooked cleaned bathed kids got them off to bed then up for school and on the bus.
Then spent hours sitting in his truck in the hospital parking lot with the hope he could see me for maybe a moment.
4 days went by and he was there everyone of those days.
Then the day I was finally released he was over the moon.
We got to hold each other and cry together for the first time after being diagnosed.
But it was just the start of our new normal our kids were scared of me because my shake was horrendous my face tremors and slurred speech was scary for them.
And then my husband managed to talk to them and explain the situation and that night I held my three beautiful babies in my bed till I fell asleep.
My husband had made changes to our home in the time I was gone we had hand rails and a shower seat a wheelchair and all of these other little things you could need in that time.
Where he found the time is still a mystery.
He is the perfect husband and I am incredibly lucky to have him as a partner.
It’s been 6 months since I came home and it hasn’t been without challenges but it has been a big eye opener for me that I am the luckiest woman alive to have him by my side.
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Alicia, thank you so much for sharing your precious story. I’m so story for your diagnosis but so happy you have an amazing supportive husband. I know I’d be lost without my caring husband. It’s not easy for them watching us live with progressive diseases. My heart goes out to you and your family. Take care, Sam xx
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