Impact and Emotions of Family Caregiving

By Cheryl Proska

Becoming a caregiver of a loved one stirs up many varied emotions.  It doesn’t matter if you become a caregiver gradually or suddenly, or if you are a caregiver by choice or default. Caregiving can be tough both emotionally and physically.

Facts about the impact of family caregiving

In a recent interview with LovetoKnow Seniors, Suzanne Geffen Mintz, president and co-founder of the National Family Caregivers Association, provided some facts about the impact of family caregiving which may surprise you:

  • There are over 50 million family caregivers in the United States.
  • Family caregivers provide more than 80 percent of home health care services.
  • Family caregivers provide over $300 billion in “free caregiving services” to loved ones every year.
  • Stress of being a family caregiver can take as much as 10 years off the caregiver’s life. Many family caregivers report having a chronic condition at more than twice the rate of non-caregivers. It is critical that family caregivers take care of themselves and their own health to address the extreme stress which can cause them to age prematurely.

The stress of being a family caregiver cannot be underestimated.  Even though every story of being a family caregiver is unique, the emotions are often more common.

This post shares a personal story then highlights the top 5 emotions of caregiving.

You may experience others, and you need to know that all your emotions are important.  No emotion is “bad” or “unacceptable”.  All your emotions are OK, and its OK to ask for help too.  There are absolutely things you can do to cope.

Saturday morning, 6:00am

My Dad was an ex-Marine.  He was always health conscious; eating the right things, exercising regularly.  He and Mom had been married for 40 years. Every Saturday morning, he’d come by to drag me out of bed at 6:00 am for our 5-mile run.  Even on mornings after I worked the night shift, he was unrelenting.  I’d moan and pull the covers over my head.  Princess, the cat, would uncurl from her warm ball on the bed, squint her eyes at him and hiss a little.  But he ignored all that.  Time to get up.

After the run, he liked to eat Wheaties ® cereal with a glass of orange juice for breakfast.  Holding his glass high for us to toast, he’d bellow: “Remember the commercial, Wheaties are for champions and we are champions.”  Of course, it made me smile.  My Dad was my best friend, my role model and bigger than life.

Everything in its Place

Then it all happened so quickly, too quickly.

It was a typical Saturday. After the run and breakfast, Dad hopped in his car and drove away.  He was going to the grocery store to pick up a few things then heading home.  I fed Princess, took a shower, then I heard my phone ringing.  It was Dad calling from the car.  He said he couldn’t find his way home from the store?  I was stunned.  First of all, this was the same store he’d been going to for years.  Second – he had a fantastic sense of direction, a great memory and was totally organized.  I can hear his voice and a favorite saying: “Everything in its place.”

I got to him, and got him back to his house.  Then I set up an appointment at a neurologist a couple of days later – as soon as I could get him in.  I was apprehensive, but never ever imagined what we were told that day.  My Dad had a 6 centimeter brain tumor.  A brain tumor.  It hit me like a hammer.  This couldn’t be right!  Dad exercised and ate right and lived a good and wholesome life.  Why was this happening to my Dad?  He was much too young for something so devastating.

Dealing with Emotions

I wanted to be in denial. But didn’t have even a moment for that.  As the oldest sibling who lived close by, it was “my responsibility” to take care of Dad in his steep and inevitable downward slide.  And so, I became the caregiver.  Totally not prepared for this, I was booked solid taking care of my kids, working full-time and going to school part-time to advance my career.  Now I’m juggling this responsibility too?  Overwhelming.

I can tell you.  Many feelings bubble up when you are caring for someone day in and day out.  I had different emotions, often colliding at the same time.  Anger, Anxiety, Depression, Sadness, Guilt, Fear…Through it, I learned it was ok – no, I learned it was crucial — for me to feel.  And it was ok for me to ask for help.

Caregiving – a formula for chronic stress

An article called, “Physical and Mental Health Effects of Family Caregiving” was written by Richard Schultz, PhD and Paula R. Sherwood, PhD, RN, CNRN.  They explain “research has showet creates physical and psychological strain over extended periods of time, is accompanied by high levels of unpredictability and uncontrollability, has the capacity to create secondary stress in multiple life domains such as work and family relationships, and frequently requires high levels of vigilance. Caregiving fits the formula for chronic stress so well that it is used as a model for studying the health effects of chronic stress.

In my experience, it helps to know that it’s more normal than not for family caregivers to be physically and psychologically stressed.  It can serve as an important reminder that all your roaring emotions are human, natural and acceptable.

Here is my list of Top 5 Emotions of Caregiving.  You may experience others and that is OK.  Your emotions are serving you as an outlet in a really difficult time. Start by accepting your feelings and yourself, then consider ways to cope and find help to benefit you and your loved one.

Top 5 Emotions of Caregiving

  1. Anger: Pillow pounding, silent screaming, ANGER– honestly, sometimes I just “lost it.”  I was mad that Dad was sick and had to suffer through this awful thing.  And I was exhausted.   Already stretched enough with being a mom, having a career and going to school, then piling on taking care of Dad was, at times, too much.
  2. Anxiety: There were times when everything seemed to be spinning out of control.  There were not enough hours in the day.  I had too much to do.  I didn’t know where to start.  Really, I wanted to run away or hide.
  3. Depression/Sadness: The situation felt so hopeless.   I couldn’t believe how fast Dad was declining and didn’t have any way to fix it. So sad for myself, my Dad, my Mom, the kids losing their grandpa — sometimes I had a big ugly cry.
  4. Guilt: Why didn’t I see warning signs that something wasn’t right with Dad?  That made me feel guilty.  Why is all the caregiving falling on me, just me?  Having concerns about my own needs, my own family made me feel guilty.  Sometimes, I just wanted it all to be over.  And this made me feel the guiltiest of all.
  5. Fear: In the middle of the night, I’d wake in absolute fear that Dad would need me and I wouldn’t be right there. I dreaded the thought of getting that call.   I was afraid  I’d forget a pick up one of the kids, and checked my calendar 2 and 3 times.  On top off all that, I was afraid for Mom and how she could absorb the blow of what seemed to be the sad, inevitable outcome.

Experiencing all this was not something I expected when I started taking care of Dad.  After all, I am a nurse.  I have been trained to take care of people.  It is different, though, when it is your father, your hero, your champion.

Top 3 Ways to Cope

When I did find myself cycling through all of this mental mess, I knew I had to do something about it.  I am sharing my Top 3 Ways to Cope.

  1. Stop and breathe. Inhale – exhale. I’d find a moment and pray or meditate.  Or I’d sit quietly with a cup of organic blueberry tea.  Clear my mind, then breathe again.  This helped to center and calm the feelings of anger or anxiety.  It is a brief break from the situation.
  2. Bring in help. I brought in a caregiver from Caring Friends Home Care.  Michael was the right fit.  He quickly bonded with Dad on a personal level.  He came to the house on a regular schedule covering times when I just couldn’t be there.  With a professional aide there, I could give myself permission to take a guilt-free break.  I used that time to take a walk, run an errand or attend one of the kid’s activities.

Michael was trained and capable of handling emergency situations. This quieted my fears.  As Dad’s condition worsened and he needed assistance with incontinence, Michael was the person to help. Even though Dad appreciated all I did for him as his caregiver; it would have been uncomfortable to have a daughter – even one that is a nurse — assist with this.

  1.  Join a support group. There with other people in similar caregiving situations.  In my local support group, I found and connected with these individuals. I was able to verbalize what I was going through.  And through it, I learned to forgive myself.  I was not perfect.  I switched my feelings of guilt to regret.  I regret I get impatient, but realize I’m human.  All this gave me the freedom to go on, start to release the sadness and move past the anger.

Maybe using these same ways to cope are a good fit for you?  Maybe these ideas can lead you to other things you prefer.  What is most important, though, is you realize that you do not have to always go it alone.  Organizations like Caring Friends Home Care are available with trained and caring Aides ready to provide the extra help you need, when you need it.

Your emotions and the physical stress you are feeling is normal for everything you are handling.  Be kind to yourself.  It will help you and the loved one you are caring for.

Blog Contributor:

Lynne Phillips, LPN, joined Caring Friends Home Care in May of 2015 as Direct Care Worker Supervisor.  Caring Friends Home Care is one of the companies in the Friends Life Care Partners family.  Lynne was promoted to Executive Director of Caring Friends Home Care in recognition of her contribution to the business in early 2017. She oversees all clinical operations and administrative activities. Lynne also provides sales and marketing leadership to Caring Friends Home Care and Intervention Associates putting efforts in place to create greater awareness of the brands and reach more clients to serve.

Lynne is a licensed nurse with over 20 years’ experience in independent living, assisted living, skilled nursing, dementia, managed care and acute care. Throughout the years, she has successfully instructed, coached and motivated direct care workers resulting in increased job satisfaction and excellence in the care they provide.  She writes from her heart and clearly shows her commitment to the health and well-being of others.

 

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