What does a typical day look like for a family caregiver?
If you’re reading this, you probably already know or want to know because you’ve noticed some changes in your loved one that could lead to you becoming a full or part-time family caregiver.
It’s no secret that the number of unpaid family caregivers has increased dramatically, and this trend is projected to continue. Among the 53 million people responsible for caring for their loved ones, you are not alone—and you need support.
Educating and Empowering Family Caregivers
One thing is sure: ETE empowers caregivers across the country, and our goal is to offer you the best possible support through education. We’re not going to give you information from someone who hasn’t been there; instead, we’ll provide you with insight from someone who has.
I spoke with Diane, a 67-year-old midwestern woman who was caring for her husband as he had a series of strokes while caring for her father, whose health was deteriorating because of an unknown cardiac condition.
She cared for her loved ones for five years, part of which was spent caring for both her father and husband simultaneously. Besides being a mother to six children and devoted “Mimi” to seven, Diane plays an active role in her community. She has put aside her own health difficulties in order to care for her family. She is one of the 21% of family caregivers who report that their health is fair to poor—and this is her story.
What’s a Typical Day for a Family Caregiver?
It all depends on what you have planned for the day. Every day is different. There are good days and bad days. It all depends on the person and how you (and they) view the situation. I just did it without thinking about it. Because thinking about it and the list of things to do becomes overwhelming. For me, it was just one day at a time, and I compartmentalized life into a series of days.
How Does Caring for Others Compare to Your Former Career?
It’s not a comparison, to put it plainly. When it comes to other professions, you may know when you’ll start and stop. But a caregiver does not have that option. You are on call 24 hours a day, seven days a week. You can alleviate some of those late-night calls or daily responsibilities if there are numerous people available to jump in and help. However, it’s being ready to leave at a moment’s notice and to never be without your phone.
Do You Have Any Suggestions for Balancing Your Time Between Self-Care and Family Caregiving?
With a laugh, she explains, “You throw yourself in the closet and hope you have all your clothes on when you leave.”
Unless your loved one is at home, you get out of bed, shower, dress, and go. It was different when I could care for my father at home than when he was in a specialized hospital over an hour away. My husband, however, had no choice but to stay in the hospital after suffering numerous strokes because we couldn’t deliver care in the same way at home or even at a step-down care center.
You allow things to fall by the wayside. When you’re caring for two people you love at the same time, you neglect medical and dental appointments, lunch with friends, and a lot of other things.
COVID restrictions were at an all-time high in several medical centers. When my father had to go to the emergency room, I wasn’t permitted to accompany him. I had to sit in my car for hours. As a result, I maximized my time. I would spend this time texting friends and family, eating a quick meal, and napping. I was utterly exhausted by the end of the day.
But self-care? Unless you’re talking about sleeping in the backseat of my car while waiting for my dad, it’s not something I did. Now, as I recover from severe burnout, I’m paying the price.
What Are Some of the Most Satisfying Moments You’ve Had as a Family Caregiver?
Just to see them smile, even if it’s only one time throughout the day. My dad was so miserable most days that seeing him smile encouraged me to keep going. He was simply exhausted from surgeries and treatment, and he wanted medical care to end. I had to accept those were his wishes when he anxiously awaited the end but hearing him say it was excruciating for me because I love him so much.
Although we’ve always been close, it does draw you closer to them. Those loved ones used to look after you, and now you look after them. It’s different. They feel helpless since they can’t live their lives the way they want to. You feel so torn because health issues have severely reduced their ability to live the life they expected to have at this age and until the end of their life. It’s tough to balance anyone’s expectations of what life should be—with the reality of what is.
How Long Were You a Family Caregiver?
I partnered with my loved ones as their caregiver for five years. My husband’s care lasted three years on and off as he alternated between recuperation and being close to returning home before sadly suffering another stroke from which he would not survive.
I cared my father for two years. I cared for him every day in the last year of his life. My father’s health gradually deteriorated until he declined rapidly. We took him to several hospitals, most of which were well-known and located in big cities, but no one could figure out what was wrong with him.
But here was a man who golfed every day, sometimes twice a day, and was now driving across the street to pick up the mail. I never knew what to expect from my dad from one day to the next. One day he would have a good day and drive to my house for dinner, and the next, he would be out of breath and unable to leave the chair, let alone the house. It didn’t make any sense.
While my spouse was in the hospital and my father’s health deteriorated, the care did overlap. With the support of my family, I was able to dash back and forth between my dad and husband on some days. But there were days when it was simply too much to bear emotionally. I never knew how tired my body was until I lay in my bed at night. I wonder if the emotional stress is worse than the physical.
What Are the Most Challenging Aspects of Being a Family Caregiver?
The whole frustration of everything. When hospitals and medical personnel are overburdened as a result of the pandemic, you worry that there’s been an oversight.
As a caregiver, you must be on your toes since you can provide crucial information to medical teams. They aren’t with them on a daily basis. You are. Because I was personally responsible for them, I understood their daily activities and intimately knew their lives.
My spouse died months before the pandemic, so his care and visits from family were very different from my father’s. Because of the restrictions, only one person per day could see my dad. When you’re part of a large family, that kind of thing matters a lot.
However, the worst thing in my situation was the outcome. My dad and spouse were incredible, amazing people. My father was elderly, but very active and in better shape than most people I knew, and I never imagined he wouldn’t be around for the next 10-15 years. It was heartbreaking to watch him become a skeleton of the person he once was. It devastated me and still does.
I felt the same when it came to caring for my husband. We expected him to return home the following week, but something unexpected happened. He contacted me from the hospital every morning before leaving our home to see him. When I asked if he needed anything, he said he didn’t think so but might want tea later.
After some time had passed, he contacted me again, but this time his language was quite garbled, and I’m still not sure how he made the call or understood how to reach me at the time, but I’m grateful he did.
I replied, “Hello?”
And then I heard him mumble again.
“I can’t hear you. I can’t understand what you’re saying.”
Then I asked whether he was okay, and he replied with a severely slurred and confused “no.” That’s when I dialed the nurse’s station and informed them that I believed my spouse was in danger and that he had another stroke.
He suffered 3, possibly 4, strokes throughout the years. The last and fatal stroke occurred while he called me. I raced to the hospital only to learn that he needed to be transferred to a much larger and more capable hospital that could handle a stroke of that magnitude.
The medical team put him on a ventilator. His living will stated his wishes, and we had to honor them, no matter how difficult it was. But we all knew there was no turning back, and we couldn’t keep him in a condition he didn’t wish to be kept in. My spouse adamantly refused this before becoming sick. We spent meaningful time with him as he was removed from the ventilator. As hard as it was for all of us, “the goodbye and we’ll see you soon” couldn’t have been more beautiful.
Do You Feel That Family Caregivers Need More Support From Society? If So, Why or Why Not?
Absolutely. From society to doctors, hospitals, and the government. In general, family caregivers require more help from whoever or whatever can provide it.
Caregivers have a deep understanding of the loved one they are caring for, including their goals in life, current circumstances, and more. It’s one of the most complex things you’ll ever face—furthermore, family caregivers who work outside the home bear a double responsibility. When you’re in these situations, any help, information, or education is invaluable.
We’re frequently thrown into this situation. As caregivers, we’ve transitioned from occupations in food service, computing, homemaking, and other fields to now attempting to master and comprehend healthcare and aging. Anything to care for caregivers is essential—from meals, a quick note saying hello, filling in somewhere. It all adds up and means a lot.
Is There Anything You’d Do Differently?
As a family caregiver, you tend to think there are things you could’ve done differently. That’s human, but I operated out of fate and faith.
You must have faith in the medical personnel, believing that they will do their job and be honest with you. Perhaps they think you don’t want to hear poor outcomes, so they give it to you in bits and pieces. That may be the case for some, but not for me. I needed to be as well-informed as was humanly possible. Otherwise, I didn’t know how to deal with the outcome or provide what was necessary for my loved one in the meantime.
What Is Life Like After Being a Family Caregiver?
For a while, you miss it because you’re so used to getting up and going. You don’t have a life outside of that, and at some point, you have to get back to the “normal” human things you’ve done before.
Maybe you’re thinking that you’ll no longer have the responsibilities and stress, but it’s just a different kind. You transition from caregiver to mourner. In my case, both my husband and father passed away. For me, death is considerably more difficult because the sadness has lingered much longer than the stress of caring for them.
I was running around so much that I didn’t know what to do when it finally stopped because I didn’t remember what my life was like before caregiving.
I couldn’t go out with my friends for a long time since I didn’t feel like it. It took me a long time to mourn. I still am. Each loss came one after the other, leaving me burned out and depressed. Before I could even picture what my life would be like without my spouse and father, I needed to heal from my emptiness. I had to figure out how to navigate my new normal, which is anything but normal to me.
Some people believe that once your loved one passes away, your responsibilities as a caregiver end, and you can return to your regularly scheduled life. That isn’t the case at all.
You can’t imagine what it’s like unless you’ve walked in their shoes. You’re a completely different person when you’re a caregiver than when you’re not. You will never be the same person again. I look at life differently now, and while my life isn’t what it used to be, I’m actively sifting through the feelings, emotions, and exhaustion that loss brings.
Family Caregivers: How Can We Help?
After reading Diane’s story, please let us know how we can best help you. Are these circumstances something you can relate to, or do you have an experience of your own to share? Please leave a comment below or consider joining our forum to connect with other caregivers and share experiences, ideas, and support.