Reflections on Caregiving
New Year’s Day often brings a time of reflection, and for some, a time for establishing resolutions for change. My life tends not to be stable enough to attempt to create resolutions for change. However, I have been indulging in reflection quite a bit.
I’ve been thinking back over how my role as a caregiver has changed over the years and the impact that it had on my marital relationship and my health. When Lynn and I first married, I knew his father had died of MS complications, but Lynn claimed to have no symptoms himself of the disease. We know now that he had several early signs of MS that he and his doctor failed to recognize.
The early years of denial
Within five years of our marriage, Lynn periodically saw his doctor for problems requiring physical therapy. When I raised MS, he adamantly denied any possibility, assuring me he had discussed it with his physician. He later confessed he had not.
Within ten years, Lynn was stumbling frequently and falling on occasion. I caught him one night testing the difference in reaction time between the movement of the fingers of his right and left hands. That moment was the turning point for me. I went from being the concerned wife (allowing him to live in his world of denial) to becoming the intervening caregiver (pushing my way past his bubble of denial).
After seeing the hand test Lynn performed, I confronted him about my suspicions. He continued to deny MS half-heartedly but agreed to let me attend his medical appointments with him from that point forward. At his next appointment which was related to his blood pressure, when his doctor asked him how he was doing, I interjected and said his B/P was fine, but there was another problem I could use his help with to get a referral. And, so it began.
By his side at every medical appointment
I’ve attended all medical appointments with him from that day. He saw a neuro specialist, was diagnosed, and I’ve been by his side all the way helping him to ease into his diagnosis. I research all medical information and offer him a layperson’s explanation, so he can make an informed decision when he’s ready to hear details.
Lynn does not want to read or talk about MS. He prefers to ignore it. Therefore, I do the research and keep the details to myself until he asks. He eventually asks and talks but just enough to make decisions. He has me talk to all his doctors and communicate all decisions. I manage everything. I feel at times that I live his life instead of mine.
“Two shall become one,” is the goal of marriage stated in the Bible, and in our case that could not be truer. There is no independence for either of us. Lynn cannot function without me. I not only manage all his medical care, but I keep him alive each day. Though he has feeling and slight movement in his muscles, he has no voluntary function in any limbs. He has no voluntary bowel or bladder control. He cannot perform basic hygiene or dress. He cannot shift his weight or change his position or scratch an itch. He cannot blow his nose or swat a fly. He cannot move out of harm’s way. He is entirely dependent on his caregiver. Our lives are grafted together in such a way that each decision that occurs impacts the other party in some manner.
Call XXX-XXXX if found
Somewhere along the way, I lost myself. It felt like I stopped having my own life and started living his. A tsunami swept me along, crashing through my life, and all I could do was try to stay afloat. I survived on five hours of sleep per night, lots of caffeine and pre-prepared food. I felt angry, frustrated, and stressed at the slightest disruption to my routine because any change had significant consequences whether the event was good or bad.
I felt guilty
I felt guilty for feeling this way; thankful for so many people who cared; isolated because I could not be around others who might cause me to bring home illness to Lynn. I was always afraid I would get ill and not be able to care for him or lose my job and not be able to afford to keep up with bills. Each day I remained hopeful that I could keep up with everything that I needed to do because I had faith in God that kept me strong.
How did I make it every day?
Through my faith. By trusting God would keep us safe and just doing. By taking life one day at a time. By putting one foot in front of the other. Living one minute at a time…because that’s what caregivers do, everywhere, every day.
The funny thing is that you get used to things over time. Now, sleeping six hours a night seems like I’m getting a full night’s rest as compared to sleeping the five hours like before. I have much less stress now that I’m not working, but I’m still busy all the time because as a caregiver, there’s always something to do. I’ve hurt my body a lot over the years from lifting, moving, and sleep deprivation.
I fully expect one day there will be a caregiver syndrome ICD code related to sleeplessness, poor diet and stress. Many caregivers die before the person they care for dies due to the neglect of their health. It’s becoming a medical problem all of its own.
Happy New Year
I’m learned so much about caregiving over the years. Been through more than I care to relive and have more to learn I’m sure. It’s been hard but worth every moment. To my fellow caregivers: Here’s to you and may you have a wonderful New Year ahead. Put your feet up a while when you can.
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