Caregiving is an expression of love, a way of “giving back,” or simply part of the circle of life. “My parents took care of me. Now it’s my turn,” says about every adult child caregiver in the world. Sunshine and flowers, right?
Sure, your parents had patience when you were going through “the terrible twos,” knowing you would outgrow them. You were gaining strength, abilities, and communication skills. Caring for you was a joy (mostly). You also did whatever they said, and if you refused to go to the doctor, say, they simply picked you up and took you to the pediatrician. Your parents had control.
How much joy do we feel as people we love, once strong and capable, become weaker and incompetent? They will not “outgrow” wetting their diapers. We will not rejoice in their accumulating accomplishments. Instead, we thank God if they still have some capacity for joy. Most of all, caregivers do not have control parents do, or the ability to change the course of events. In other words, we cannot parent our parents. Declaring it is now “our turn to care for those who once cared for us,” is a little lopsided — necessary, but clearly not the same dynamic.
Not only that, your care receiver needs help dealing with all the losses he or she is experiencing. It’s terrible to lose one’s independence, know that your mind is “slipping,” or be unable to do what you could once do so easily.
Signs of Burnout
Whether caring for ailing parents, spouse, or someone significant in our lives, we caregivers eventually become exhausted living, what is called the “36-hour day.” As much as we love our care receivers, their needs can be unrelenting. “The Sandwich Generation” includes Boomers, GenXers, Millennials — any cohort that is squeezed between caring for their parents and their children at the same time. Or what about people who work 40 hours a week at their job and another 20 hours caring for someone else each week?
And therein lies one reason for “caregiver burnout.” We become “crispy critters” trying to do all and be all for our loved one(s). We need help, not because we are lacking, but because we are human.
Unless the people you love die suddenly, you will likely become a caregiver for months, or even years. I love the title of pastor and scholar Eugene H. Peterson’s book “A Long Obedience in the Same Direction.” That describes caregiving perfectly. And to live obediently in the “same direction” for a long time, caregivers need supports.
Your physician should be able to help. Caregiving causes stress. Stress causes illness. “This was a terrible day, so I deserve to eat cake, and have two glasses of wine instead of one.” Underlying medical problems will become worse if you make choices that bring temporary comfort at the expense of continuing health.
You probably will come away with a prescription for an antianxiety medication, which you may need to take for now. But, please find someone to talk to, be it a counselor, pastor, or even a friend. Here is a terrific website about caregiving burnout, and a good place to start to find help. https://www.helpguide.org/articles/stress/caregiver-stress-and-burnout.htm
Some caregivers cannot leave their care receiver alone for any length of time. I joined a Facebook group for Caregivers https://www.facebook.com/groups/CaregiversHubSupportGroup/ There, people vent, ask questions, encourage one another, and offer understanding. You will find others have problems even worse than yours! You won’t feel so alone when you share your experiences with people who truly understand.
Do Something for Yourself
Not taking time to care for yourself or to “find your bliss” (whatever that may be) is a sure path to burnout. I feel anxiety drain away when I work on a quilt project. Last night, I watched Jerry Seinfeld and laughed out loud for the first time since this Covid 19 pandemic started. In other words, do what you must to take care of yourself. That includes eating well and getting enough sleep. Difficulty sleeping is another sign of burnout, which makes caring for yourself that much harder.
I believe everyone needs to recharge spiritually. Whether that means prayer and Bible reading, Yoga, or even getting back to nature, do take the time you need, even if someone else must take your place for a while. If you like devotionals, download the free Bible app onto your iPhone and there you will find a huge selection of devotional plans, literally in the palm of your hand.
Sharing the Load
As an only child, taking care of my parents fell to me alone, and I often wished I had a brother or sister to help me. Since then, in my work with caregivers, I’ve discovered helpful and unhelpful sibling dynamics. One family listed every need their mother had, and each sibling selected the task(s) he or she could take on. When I visited the Mom, the daughter (in charge of medical “stuff”) told the community health nurse which sibling was in charge of what so she would know whom to call for a particular issue. What a team!
But not all family members co-operate with each other. I asked one burned-out caregiver if she had asked for help from her family. She announced she did not because “If they loved me, they would know!” I guess that family was gifted with mind reading.
Eventually, there comes the time we all need help. (Read my blog Where to Find Help for the Elderly and Caregivers Part 1, Posted on September 22, 2019). Case managers, for example, can direct you to resources you may not know about, and that are affordable or even free. Your care receiver’s course of illness, especially dementia, will create different needs over time, so you will need to keep up with the various supports out there. The Alzheimer’s Association offers a wealth of information and services to help with this enormous challenge. https://alz.org/.
Reach out for help before you become a crispy critter. You matter too.
Update: I love it when people comment or contact me about a blog. After I posted by blog about mesothelioma, I received a lovely email from Samantha Litten, who works in the Public Outreach Department of the Pleural Mesothelioma Center.
She wrote, “As you may be aware, pleural mesothelioma is a deadly form of cancer caused by asbestos exposure. Due to the long latency period of mesothelioma, approximately 20-50 years, about 80% of those who are diagnosed with this terrible disease are seniors. Our organization works 1-on-1 with these individuals to help them find local doctors, treatment centers and support groups, all for absolutely no cost to the patient.”
She included their resource link in addition to the ones I had posted. https://www.pleuralmesothelioma.com/cancer/prognosis/
Thank you, Samantha.
I love this blog there is so much truth here and hopefully people heed your advice to get support for themselves.I have known several of my friends try to do this on their own and you could see a change in their personalitys.It is a difficult situation as everyone in the family is scattered and the only one near Mom and Dad is you.Thank you for reaching out to al care givers.
Thank you, Lenette. Your experiences with your friends just verifies the truth that there is no one who can pull off caregiving alone (and keep their sanity or joy). People need to turn to their friends in times such as this. As you know, dear friend.
Sue, this was the best description of care giving and it’s ramifications that I have seen! My experiences were relatively short and intense, where yours have been extensive.
I often think that God gives us what we can handle; my career as an ICU nurse provided me the ability to think fast on my feet, charge in with guns blazing, and live one day at a time. Not that this isn’t fraught with stress, but one can take “mini-breaks” to soothe oneself. For example, during the days Bob was hospitalized with infection, I treated myself with an amazing oatmeal cookie baked in the St. Joe’s coffee shop, then got to bed early to make up for sleep lost during nights Bob was home. This, plus the fact that our kids and my California-based sister rallied round to help supported Bob and me so very much.
My Dad’s death was our first big loss; it, too, was short but intense. His coronary artery disease had progressed to the point of emergent bypass surgery. Our hopes were high as we gathered around him that morning after Christmas when we joked about him returning to the golf course so he could prepare for his third hole-in-one! Sadly, Dad suffered a peri-operative MI and did not survive. I was the one my family turned to during this dark day; luckily I could prepare myself by reading the signs portrayed by the nurses and surgeons as they updated us during the operation; when Dr. Parker finally walked down the long hall toward us at the end, his hunched shoulders and downcast expression said it all. I was so busy comforting my family it delayed my expression of grief.
Following Dad’s death we helped Mom sell her house and moved her out by me and Bob in Liverpool. She was proud of her tiny apartment whose kitchen window overlooked Onondaga Lake, but she spent most of her day at our house, which at that time housed all five of us, including three kids from 11 down to 1 years old. The ten years until Mom joined Dad in Heaven were a whirlwind, as the kids became teens, Bob and I changed jobs, and eventually we lost Mom to a month-long battle with pneumonia.
Thank you for allowing me to roll back the years! This past Saturday, when Rich, Jenn, Kelly and I, in addition to their spouses and kids, spent a three-hour ZOOM session reminiscing over these years. This was my effort to fill in the gaps so they could carry on the family stories, but I found they enlightened me as well. Rich reminded me that he and Grampa used to go play miniature golf on Sundays after church, while Nana, the girls and I did our girly trips.
Going forward we also started to plan our first big get-together as we restart our connections following quarantine. I was touched that their concerns were centered on my safety, as we planned to go boating with Jenn, Kevin and the girls on “The River”. I trust that all the kids have maintained mask use with social distancing and sanitizing, and I certainly have; we will continue to use these precautions carefully. Looking forward to it so much!
Thank you for sharing your journeys, Cathy.You will never know how much your strength brought your family through those painful days. I give thanks that, through Christ, those “deaths” were merely transitionsfrom temporal bodies to eternal ones. Caregivers like you are angel guides.