Whether you find yourself caring for a grandparent, spouse, child, or sibling, you’ve probably concluded that you’ve bit off more than you thought you could chew. While there is no easy solution to navigating a difficult season of caregiving, there are helpful ways to cope.
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness” (2 Corinthians 12:9 NIV).
What is a Caregiver?
People confuse the words caregiver and caretaker all the time. Is there an easy way to remember the difference? A caregiver is a person who volunteers without compensation to care for those who are unable to properly care for themselves, such as the elderly, children, or individuals with disabilities or chronic illness. A caretaker is someone who is hired to maintain and repair a home or estate and the properties associated with it.
What Does a Caregiver Do?
- Help bathe, groom, dress, and exercise the person.
- Buy groceries, prepare and serve meals, do laundry, take them to the doctor or physical therapy, and pick up medicines.
- Be present, supervising and offering constant companionship and emotional support.
These are basic levels of care. Some caregivers do a lot more, such as managing finances, running the household, supervising repairs, etc.
Why is Caregiving Hard?
- Taking care of someone else is beyond difficult. The physical demands are exhausting. Helping someone use the toilet, lifting or helping an adult get out of bed and into a wheelchair is hard work. Also, cooking, housekeeping, doing errands, taking them to appointments fill up each day.
- Listening to a person with dementia repeat the same things all day can drain your soul of all joy. They ask the same questions with the same tone and inflections over and over and over, expecting you to answer as pleasantly as they asked. But at the end of the day after hundreds of questions, the caregiver’s brain feels short a few marbles, and their patience is strung as tight as a piano wire.
- There’s no time for you. Caregivers have a constant companion, a shadow who is with them, all day every day. Not a companion that to hold a conversation with, or learn something new from, or even reminisce with, but someone who is a shadow of the person they knew and loved, one who no longer remembers the shared experiences or emotions.
Coping When You’re Caregiving
- Take a day off. Find someone to sit in for you. Call in a family member or hire a professional to look after the needs of your loved one while you take one day a week to do the things you want to do.
You need a break to keep from breaking.
- When the repetition gets to you, go into your bedroom or a closet and scream your frustrations. Letting go of the pent-up emotions can help relieve the tension and prevent blurting out responses that are inappropriate and unfair to the person you are taking care of. Your loved one no longer has the ability to understand how much they are hurting you, but they are hurting you nonetheless.
- Find your funny. Humor is a great way to relieve stress. Look for the humor in your daily situations. Say something funny to the person you are caring for. You might be surprised at their response. Humor can diffuse the tension in wonderful ways.
- Music can have a calming effect. Some people find that classical music, instrumental praise and worship songs, or a familiar song list the person associated happy times with (e.g., 40s and 50s music), can be immensely helpful.
Caregiving When You’ve Got Nothing Left to Give
When a caregiver reaches the point when they can no longer continue caring for a loved one, it’s time to ask for or even demand help. Taking care of someone puts a huge strain, not only on the caregiver, but on the caregiver’s other family members. The daily tension and drudgery tests marriages, and relationships with children who often resent the lost time and attention devoted to the individual being cared for. In addition, the caregiver likely had to sacrifice favorite activities or hobbies in order to offer the level of care needed. If siblings or other family members are not willing to help on a consistent and committed basis, it may be time to consider either bringing in outside help for much-needed relief, or placing your loved one in a facility where they can get the next level of care they need. There is no guilt in knowing when it is time to let someone else continue the care you are physically, emotionally, and mentally unable to sustain.
Mama Rose
My Story…
When You Know You Know
In 2010 my siblings and I decided that our mother could no longer live alone. Our father passed away in 2004, and in 2005 Hurricane Katrina destroyed their home. Kind of a double emotional whammy for her. She refused to come and live with her children. So, afterwards, she lived for a time in Texas, then with a sister nearby, and finally at her parents’ vacant home in Louisiana.
For a while, things seemed to be going well. Her sisters picked her up on Sundays to go to church and then out to eat. They also visited her and brought meals. Our brother lived about an hour away. He and his family also visited. However, my sister and I lived in Texas and Illinois and were not able to see her as frequently, though we called her every day.
However, she began to look frumpy and unkempt. She wore mismatched clothing and didn’t cut her hair or nails, wash clothes, or take a shower. The refrigerator was filled with moldy leftovers and expired foods. And we were disturbed to find a stash of burned pots hidden in the garage. Apparently, our mother would put something on the stove to cook and then forget about it. She had the presence of mind to hide the burned pots from everyone, but soon there were none to cook with.
Follow the Signs
Through the years there were subtle signs that she had memory issues. Mom used to write everything down. She kept ledger books of payments, and when she’d mailed them, conversations with family members and what topics were discussed, reminders of upcoming events and birthdays, anniversaries, etc. We didn’t realize it at the time, but these were cheat sheets to hide the fact that she was losing her ability to remember. One of her sisters, a retired nurse, noticed something awry and brought her to a general practitioner for a checkup. Though her physical body was in excellent health, her cognitive tests indicated a diagnosis of dementia.
Currently, an estimated 6.9 million Americans are living with Alzheimer’s dementia
She was still driving at that time and would often forget where she was going, why she was going somewhere, or where she lived. When we found that out, stage one of our caregiving was to quietly take away her keys and the car. If she continued to drive, she would not only be a danger to herself, but also to others, and we couldn’t allow that. But what to do next?
The Strategy: Share the Care
Many of us have seen family patterns of caregiving. Usually, one sibling, most often a daughter takes on the task of caring for an elderly parent, or both and the other siblings back off from active participation. A sad and unfair situation. My brother, sister, and I put our heads together and decided that the only way to approach caring for our mother was to share the care. We would rotate every four months, starting with me. My husband and I drove to Louisiana and brought her home with us.
Initially, we all thought, “how hard could it be?” Taking care of mom for four- month intervals would go by fast. But four months of caregiving a dementia parent felt like four years instead of four months. Mom would ask the same questions all day and half the night. I felt like I was losing my mind.
What I Did
The first thing I had to do was to see to her care, so I put her on a proper diet and sleep schedule. I bathed her every night, had her hair cut, her nails done. I arranged for cataract surgery, something she had put off for years. Once she could see clearly again, her mood changed from depressed to mostly cheerful, a definite improvement.
We went on half-mile walks together every day, which she loved, so much so that she often asked to go for multiple ones. Though it was gratifying to see my mother improve, and my sister and brother taking the reins and continuing her care, the strain began to wear on us.
The hardest day for me was the day my mom didn’t know who I was. She looked at me with a blank expression and asked who I was. My heart hurt. I held back sobs. “I’m your daughter.” The first time was the hardest. Sadly, after a while, you get used to it. And there’s humor to be had from some of your conversations. For instance, on my birthday one year I told mom, “Guess what today is? Today is my birthday!” She smiled and said, “Well, happy birthday whoever you are.”
Sharing the care definitely took some of the burden off of me and my siblings. Somehow knowing the finite amount of caregiving time gave us a goal we knew we could endure. We began caring for our mother in 2010. This year, 2024 marks the fourteenth year we have rotated care between us. If you’d asked me fourteen years ago how long I thought I could take care of my mother, I would never have imagined any of us could endure such a stretch.
What Kept Us Going
The commonality of our faith is the only way we were able to maintain peace and presence of mind to continue the caregiving journey. My brother and sister and I signed on to take care of our mother out of love and devotion to her, but we were only able to continue the steadfast dedication to her care through the love of Christ. When you are down to the bare bones, frayed and frazzled, tested to the limits, sad and soured, Jesus is your all in all.
God extracts the precious from the vile through our trials and difficult circumstances. In the end, what is left is a strong faith, distilled and concentrated, a potent faith God makes perfect in our weakness. Caregivers survive through experience, through tears, through perseverance and determination and the exercise of faith from paper to practical use. We live out our faith sometimes standing or on our knees, and at times barely able to crawl. But as long as you are moving forward, you will eventually reach your destination.
Our mother will turn 92 in August, and we look forward to celebrating her. She’s still our mother, whether she knows it or not. And we love her.
About the Author
Linda Kozar is an award-winning multi-published author of traditional and indie-published fiction and nonfiction books with a Southern flair. Linda and her husband Michael live in The Woodlands, Texas and enjoy spending time with their two grown daughters, their wonderful son-in-law, and grands Eden and Wesley.
Her latest release (April 2, 2024) is a devotional book titled, Gimme Some Sugar 90 Devotions to Sweeten Your Day in a Godly Way (BroadStreet Publishing).