“You’re a saint!” said a friend recently. “No,” I replied. "I just do what needs doing.”
As my husband has become more physically limited, I’ve picked up the slack. I could not do otherwise.
Admittedly, at times I feel overwhelmed and resentful, utterly exhausted physically and emotionally. Working a full shift from 3 to 11 am in medical transcription with friends beginning to retire, running to medical appointments on multiple afternoons every week for years, and taking care of most home chores, I can become shortsighted and pull a good pity party. Then I remember how the Lord has been with us as He works “all things together for good to those who love Him.” (Romans 8:28)
We now understand the grieving process after the total loss of Ed’s vision, the passing of our 25-year-old married daughter, and my breast cancer amidst my husband’s health issues. He had been legally blind since he received damage from the incubator’s pure oxygen after premature twin birth (his right eye never had vision). Yet Ed farmed with his dad as he grew up and for ten and a half years after we married. We marveled at his determination and ability to do whatever he could with limited vision. So, it was a surprise when depression set in as he lost the last vestiges of sight.
No one told us until later that it takes time to grieve any loss, to understand and accept the challenges. There is often denial, not wanting to face changes. Guilt or the “if only” stage may be followed by anger and depression. Learning new ways has not always gone smoothly. We dealt with Ed’s depression at becoming more limited in his abilities, along with major changes in our roles. Though it took a toll on our marriage, we remained focused on our children’s needs. When all seemed well, 11 years ago, he developed unrelenting muscle/joint pain and dizziness, neuropathy, had multiple surgeries, grand mal seizures, life-threatening pancreatitis, severe congestive heart failure, COPD on chronic asthma, and more. Then, my mother had a stroke leaving her partially paralyzed, and I took charge of her affairs, too.
The good news is that our love survived…and grew deeper. After vision loss, Ed spent six months at The Carroll Center for the Blind in Newton, Massachusetts. He received invaluable training among others who were blind. Finding it harder to get around now, in a wheelchair for appointments, Ed does his best to help – he works a few hours weekly from home, makes my grocery list, does a load of laundry weekly, adds pellets to the stove, and more as he’s able. We can’t go to church together, take walks, have date nights, or travel to visit family and friends. Instead, we value quiet time talking, listening to music or favorite preachers on Christian radio and TV, and even playing “Trivial Pursuit” without the game board.
Through it all, Ed’s faith, wisdom and sense of humor remain intact, seeing us through difficult days. God has granted us strength to accept change and persevere, with insight and compassion we would not have had without the trials. We understand better how to help each other, like when to offer assistance or give each other space to learn by trial-and-error.
We’ve learned the community has kept its eye on our family over the years. It’s humbling to know God uses us to help friends facing challenges. When poetry began pouring out from the depths of my heart, reflective blogs were added and Poetic Devotions was born. Tentatively stepping out on a limb to blog publicly, the Lord blessed me with words and the right Scripture which strengthen my faith and touch the hearts of others.
Yet, the role of spousal caregiver and healthcare advocate can be physically and emotionally draining, often leading to burnout from feeling overwhelmed and stressed. It’s hard to watch your loved one suffer. Stress and grieving the former way of life may take various forms. Like me at times, you may become tired, teary, irritable, short-tempered, depressed, lose interest, pull away from friends, or feel helpless, unable to deal with one more thing.
Under stress, caregivers often let their needs slide. From experience, I can tell you not to neglect your own health. Ed insisted I get my mammogram which I planned to cancel because of his health needs. Dutifully going, I was diagnosed with breast cancer, facing surgeries without him at my side while he needed surgery in between mine. Diagnosed at an early stage, I feel blessed to be cancer free.
Get plenty of rest. Learn when to say no. House cleaning can wait. Stay involved in activities or hobbies that interest you. I take walks, write, quilt, garden, make silk floral arrangements, and lead singing at church. Spend time with friends who support and energize you, just as reaching out to others will encourage them and you. Share your feelings, pamper yourself, and accept help. After my cancer diagnosis, friends showered me with cards, a beautiful pink azalea, were at my side for surgeries since Ed could not be there, and brought us meals.
I feel guilty enjoying a day out with a friend, leaving my husband behind, but it’s emotionally relaxing and rejuvenating. Kayaking with friends last summer was awesome! Posting some of Ed’s humorous quips or an updated status on Facebook provides feedback to let us both know how deeply others care as we touch the hearts of family and friends.
Essentially, we are all caretakers of each other. Seek wise counsel to discuss challenges or guide you in obtaining assistance from professional agencies. Find support within your church, or a community group specific to your family’s needs. Take advantage of local adult day care or respite programs. Search for helpful information and support online.
Having observed us at a distance, our friend gave the above compliment. Though I do not feel deserving of being called a saint, we all are as Believers. Our lives are to be examples of Christ’s love working through us. Without His guidance we can do nothing (John 15:5), but it’s hard to remember that. If you fail as I do at times, don’t give up; apologize and forgive, identify the issues, and try again. I appreciated another friend who shared that, when so many marriages are torn apart by hardships, we are an example of long-term faithfulness.
Without comparing anyone’s unique circumstances, others traveling their own very difficult journeys have felt the same way. I don’t have all the answers, but I praise God for His faithfulness in guiding and renewing us daily. Amidst many trials, David wrote, “God is our refuge and strength, an ever-present help in trouble.” (Psalm 46:1)
Jesus says “Come to me, all who are weary and burdened, and I will give you rest.” (Matthew 11:28) I Peter 5:7 reminds us to “cast all [our] anxiety on Him because He cares for [us],” while Isaiah 40:31 affirms that “those who hope in the Lord will renew their strength.”
And the Lord has given us His peace and strength to persevere together, even on those hard days, as we walk a different path than expected when we said “I do” nearly 45 years ago.