What is caregiver syndrome.

And why do those being cared for often outlive the caregiver?

Did you know that in the year 2030 more than 73.1 million Americans will be 65 years or older? (1.) This is when the last of the baby boomer group enters the range.

What does that mean for you? And why should you care?

Because who is going to care for these older individuals?

If you are not currently a caregiver for a parent, grandparent or loved one, you likely know someone who is.

As a child, I watched my father drive 3 hours to San Antonio every weekend during a time in my life when my grandmother was entering a nursing home and my grandfather had passed away.

After my grandfather passed away, my grandmother was isolated and alone. Then one day she fell and broke her hip, requiring my father to come to a harsh realization that it was time for her to move into a nursing home.

The typical aging scenario occurred. She stopped driving once it was no longer safe. She didn’t want to move cities, so she stayed in San Antonio and my dad visited regularly. She developed Alzheimer’s and dementia and was moved to a memory care unit. She lived the last days of her life in a nursing home.

My father did everything in his power to ensure her care was high quality (and her wishes were fulfilled). Despite his own work stress, 5 children and a wife, and a life of his own in Houston, he was dedicated to regularly seeing her and ensuring her well-being. It’s an example that greatly affected me.

Maybe this scenario of aging and going to a nursing home, having mental decline, losing independence sounds familiar to you? For many, it is what’s expected with aging. What a party to look forward to.

Up until 2019, that was the greatest extent of my experience with caregiving. I knew it was a stress on my dad, but I was too young to empathize, or to fully comprehend the weight of it, at the time.

However, in 2019 my father suffered a massive, life-altering ischemic stroke out of nowhere.

As you may know, there is hope for restoration of loss of function after a stroke. Research shows that consistent therapy the first 18 months after a stroke can cause what was lost to come back. In my father’s instance, it was the loss of function on the left side of his body. So for the two years that followed, I (and my siblings and mom, of course) gave everything we had to fight for recovery. However, his loss of function has remained.

To say it was stressful or eventful is making light of it. I used to wake up daily, thinking I was living in a nightmare. As did my father and the rest of my family, I’m sure.

One of the worst parts was when he was in a nursing home. For a short stent, my father spent time in a nursing home. After being discharged early from a rehab hospital where he was making progress (this is the norm) we had no way or place to care for him as he was now wheel-chair bound and required full assistance with transfers and care. The home he and my mom lived in prior to the stroke didn’t have the proper access or bathrooms for his status.

Nursing homes might be great for some, but it was shocking and disgusting for me. Lack of basic knowledge, overworked employees, isolated individuals, food that is filled with sugar and lack of nutrition, it was nowhere I would ever want to be.

Today, the average length of stay in a nursing home is one year (2). It used to be two. That means, after admission, most people only live one year in a nursing home.

People don’t go to most nursing homes to become their best, healthiest self, they go to nursing homes to die. Likely from isolation, poor nutrition, and loss of hope.

If you have a loved one in a nursing home this is not necessarily a problem, like my grandmother, it was a necessity.

However, be real. Do you want to live in a nursing home? Most people don’t.

That is why over 34.2 million Americans have provided unpaid caregiving to an adult age 50 or over in the last 12 months. (3.).

People are realizing they do better at home as they age. Children are realizing putting their parents in a nursing home is a horror show.

After we emergently moved my father out of a nursing home when we realized they wouldn’t let us visit him as Covid became more of an issue (and he had already fallen and been mistreated repeatedly), we moved him and my mom into an ADA hotel room.

Personally, I was scared out of my mind. Despite the negative aspects of the nursing home, I knew intimately how much care my father required.

However, we made it work. We were able to find caregivers to help us while we were at work, and my siblings, mom and I filled in the gaps of his 24 hour care.

After 2 and a half years of caregiving, and my own life stress, my body gave out. One of the most stressful years for my health was 2021-2022. But who would be shocked? For the past 2 years I’d lived in a constant state of stress and neglected my own red flags to my well-being. (Read more about advocating for my father during Covid here.)

30% of caregivers die before those they are caring for (4).

Why? Because of caregiver syndrome. Caregiver syndrome is defined as physical, mental, and emotional exhaustion.

Caregivers give their all for those who are dependent on them. Personally, I gave out of a sense of trying to control a situation that was too heavy a burden of grief. I would have done anything to have my pre-stroke father back.

I have the best parents in the world, so why wouldn’t I give as much as possible to those I love?

Many people lose a family member after a stroke, but my father survived. Shouldn’t I just be thankful he’s alive, no matter what I’m having to do?

This exact mindset is why caregivers don’t care for themselves. And why, as a result, their health suffers more than those receiving their care.

We can think about how important nutrition and movement is in our well-being, but the stress and isolation of caregiving is like nothing I’ve ever experienced.

Dr. Pauline Boss defines this grief as “ambiguous loss,” in her book that greatly changed my mindset, Loss, Grief, and Resilience.

Ambiguous loss is grief that has no end. Often if someone dies, there is a process, a funeral, a normal routine of loss, grief, and healing.

With caregiving for the elderly, especially if there is a drastic change such as a stroke or Alzheimer’s, there is a daily reminder of loss, without any process for grieving.

Being stuck in this process is not only heavy, it can also be mentally and physically detrimental. It can lead to chronic stress, leading to chronic low grade inflammation, the precursor to health issues we all need to avoid.

Stop the process.

If you are a caregiver, or expect you will be, you have to learn to take care of yourself, otherwise stress will take advantage of you. I’ve spent the last 18 months healing damage I inflicted to my body by means of “caring.” I spent years without a cycle, developed GI issues, fatigue, thyroid imbalances, inflammation, and mental burdens.

Despite all of those things, I have zero regrets on how I handled the situation. Why? Because I sense an ocean of need. And through my experiences, I hope that you and others can avoid devastating situations.

If you are an aging individual, take care of yourself. Oh wait, that’s everyone.

One of the main reasons I have spent the last 18 months getting uncomfortable and healing my body is I never want to be a burden on others. My actions today dictate my health in the future. So do yours.

Being a caregiver will likely affect you or someone in your life. It is imperative to find balance, for caregivers to be their best self in order to be there for those they love. Caregiving is often a silent, isolated form of suffering, but with the projected numbers, it shouldn’t be. There’s too many.

If you’re a caregiver and you need help finding balance or you want to prevent disease in your own life, reach out or comment below.

Priscilla Barnes

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