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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).

Intervention

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.

Lives intertwined

“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.

New normal

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Dorry
    7 months ago

    Thank you all for sharing what has been very difficult experiences of being a caregiver and also for the loss of a partner.
    My recollections of being a caregiver was when my husband was diagnosed with two of the worst medical conditions. ENCEPHALITIS & MESOTHELIOMA. (lung cancer which was inoperable incurable, terminal). I remember that day we entered the doctors office to learn there was nothing they could offer but Chemotherapy, and Radiotherapy. My husband was in denial and thought this was his cure. My heart broke when I had to tell him that this was only buying him more time. I was his caregiver for 3yrs.39days when he died 5th May 2012. My grief was unbearable. I feel priveleged to care for my husband of 44yrs. honoring God and Leaning on Him to do the caring which was very demanding and leaves one depleted unless God held me up. In retrospect I could not have gone through it all without divine intervention. I feel content that I was able to do the caring under difficult circumstances and painful to watch the suffering. Screaming out to God often for Help and Support. All given by caring Family and friends who surrounded me when I needed it.
    Never underestimate what God can do for you when you trust Him and Honor your vows. May God Comfort you all each day in life’s Challenges.

  • Donna Steigleder moderator author
    7 months ago

    Thank you, Dorry, for sharing your experience with us. I can imagine how difficult it was for you to clarify the diagnosis with him. I remember how I felt when I had to ask Lynn what he wanted to do about going on the ventilator or staying off. Life and death conversations are so hard but necessary at times. I would not have been strong enough without God there to hold me up as well. His peace sees me through the hard times and keeps me going. I’m glad you have a good support system. Thanks again for sharing. Donna Steigleder. Moderator, Author

  • caregiverX1
    7 months ago

    Donna, As I sit here reading your expressions, the tears stream down my face because I can so relate… I can also relate to your devotion. Your self-sacrifice will never be forgotten by God. You are lending to God as you continue to show compassion as Lynn’s caregiver…love in action. Almost 10 weeks ago, my dear husband lost his battle to MS. He had it for 14 years. He passed away here at home. I am still picking up the pieces of my broken heart and will do so for quite some time. Finding normalcy doesn’t feel normal. The tears flow freely, daily, and of course unscheduled. Yet, I have an amazing support system of dear friends that have come to my side and comforted me. And I am assured (and I thank God for this) that they will continue to be here for me. Next to God, my husband was my Rock. I miss him dearly. Despite his inability to use his legs at all, and minimal ability with his hands and voice (and much more), his eyes and his smile of appreciation and approval for what I was doing for him (24/7 as his caregiver and advocate for the final 6 years) was all I needed to see and feel to keep going despite the many “potholes”. Yes, there were days he could not smile, and neither could I. His pain was mine. And my pain was his. But we made the best of a difficult situation. We remembered the good times, and we even made good times happen with what little he had left. His daily small accomplishments were huge accomplishments to us. Donna, please continue to blog. I gained strength from your thoughts through these difficult times of mine. It assured me that I was not alone. And there is no doubt in my mind that others out there feel the same way.

  • Donna Steigleder moderator author
    7 months ago

    CaregiverXI, I am so sorry to hear of your loss. I know that you feel that a piece of you is missing because it is. As a caregiver you become so much more than husband and wife, the “two become one” becomes truly real; more real than anyone can imagine who has not lived it. I can tell from your writing that you are a woman with a strong faith so I know you will be comforted in the days ahead by the knowledge that you will be together again when you go home but until then let God wrap his loving arms around you with peace and love and sweet memories of the good times and the success you had in making his life better because you were there. God bless. Donna Steigleder

  • JMag
    7 months ago

    Donna: sometimes when I read your posts I swear it could be me doing the talking. I try not to dwell on what could have been, but as I get older I realize that my husband and I really need to take stock of the laughs we have had, rather than the misery of MS. Thank you for your posts – it reminds me that there are others who understand.

  • Donna Steigleder moderator author
    7 months ago

    Thanks for sharing comments for it helps me in the same way that you say you were helped. Somehow knowing we are not alone makes it all better.

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