I drove into the parking lot of the park on an early morning in June.  It was one of those emotional days where I could cry at the drop of a pin.  I lost my Dad in April to Pancreatic Cancer, my spouse just completed his 6 rounds of chemotherapy for Non-Hodgkins Lymphoma and I was spending tons of time with Mom working on her transition to her new normal as a widow.

I was struggling physically and emotionally.  I didn’t take a breath for the last six months.  I had the two men in my life going through chemotherapy.  I was juggling being an advocate for both of them - doctor appts, chemotherapy, insurance claims, medications plus managing the home, working full-time and doing a part-time business.   Did I also mention that my mom and dad lived 250 miles away?

I did the best I could but I put a lot of things on hold and relied on sugar and caffeine as my crutch.  I was so fatigued that I grabby comfort food (fast food, sweets and easy).  I found caffeine and soda as my pick me up.    It was a 2 hour drive to visit date and a 2 hour drive back.  So I found candy and soda as my night drive home and coffee and a donut as morning drive.   And if I was really hungry an egg mc muffin at McDonalds was pit stop I made.  My gym visits and running routines were inconsistent.    

It scared me just to look at myself in the mirror.   I didn’t recognize myself physically and mentally.  

So that day in the park was really an epiphany.  That light bulb moment.  

I sat in the car and just let it out.  It felt so good to sob.  It felt good to get angry and yell.  

Once I got through the immediate emotion,  I opened the car door and sat on the hood of my car on that beautiful sunny morning.  

It finally made sense to me… I didn’t see this coming back in Sept 2017 and just jumped in.  

Isn’t that what most caregivers do?  

One of the biggest mistakes caregivers make is they go into caregiving with a big heart and know they need to do what it takes to help their loved one.    

What happens…  you’re all in?  Care, Care, Care?  Give, Give, Give?

You get so involved in what you need to do, then you realized it’s a lot.   What do you do?  

You drop or let go of the things that you feel aren’t necessary or you just need the time and prioritize.  You're cancelling your personal appointments.  You stop going to the gym or working out (saves you an hour a day).   Those fun activities are not longer an option (lunch with friends, date nights, your favorite pottery class).  You adjust your work schedule and are working late nights and weekends to keep up. 

What happens is that you have this big heart filter going on - meaning you put yourself last.  You only see the importance of taking care of your loved one.  They need you.  You say "I can’t possibly do anything else right now".  

It seems logical and the right thing to do.     But at what cost?  Is this sustainable?

 

When my spouse was getting chemotherapy, I thought it was the right thing to be by his side during his treatments, all appointments, picking up his meds, home nursing, meals, insurance claims and home cleaning.    I realized that I couldn’t do it all.   If he was at his chemotherapy, he had a nurse there with him.  It would give me time to work or do errands or just have my own personal time.  

Getting back to the park / car hood moment….  I sat there and had to take a step back.   When I started caregiving, I never really worked through my new normal.  Meaning I was taking on caregiving responsibilities and never adjusted anything else.  I just added more to my cup. 

Vision a full cup.  That’s your life before caregiving.   Now you are pouring in more into that cup.  What happens,  It overflows onto the saucer and making a hug mess.  

If you are new right now,  I want you to stop and do this thought work.  

But don’t fret,  if you are an existing caregiver, you still can do this.  This is what I did in the park on the roof of my car in the beautiful sunshine.  

THOUGHT WORK TO A CAREGIVER LIFE YOU FEEL GOOD ABOUT:

1.  Grab a sheet of paper and draw a line down the middle.  On the left side - what did your life look like prior to caregiving?  Work hours, travel, hobbies, activities, friends, family, etc.
2. One the right side, what does caregiving look like?  What are your responsibilities, time, location of loved one, challenges, etc.  
3. Now highlight or circle anything that conflicts or concerns you.  
4. Now grab a new piece of paper or your journal and reflect on:  Is your new normal sustainable?  What are the risks?
• Mine wasn't sustainable.  I couldn’t keep going and going - I identified that I was doing caregiving, my job/business, house work - but wasn’t doing anything for myself at all.  Review the 3 levels of Caregiver Stress
5. What would the ideal caregiver life look like for you?   Really think through this and don't talk yourself out of anything.  For me it was:
   • Asking for Help - brother, friends, automations and deliveries
   • Putting myself first - priority
   • Conversations with my loved ones and family
   • Which appts did I have to attend?  
   • Feeling good about taking care of myself and how to release my guilt and worry

It will feel good to get this out on paper.  The hard part is working through it all.  Warning - take small / baby steps.   Try one thing at a time and adjust until you find what works.

It comes down to seeing you in your new caregiver identity.  It's the most important step to creating a caregiver life you feel good about.   There is no one size fits all caregiver.  Just like your loved one is unique and special. You are too.  When you figure out your need to do what’s best for you and your loved one, you can find more joy in this journey.  

My discovery was.. I had to let go of my control and perfectionism.   Once I allowed others to help and focused on quality over quantity, I was able to enjoy my loved one and my emotions and fatigue were better. 

I also found support in conversations with other caregivers.   Small communities of ladies that have similar experiences.  You don’t have to feel alone.  They get what you are experiencing or feeling too.   

This past week we held the first Caregiver Cup Circle.   It’s a small group setting where we gather together to share our feelings and experiences.  Family and friends are great but they really don’t ‘get it”.  Getting feedback and insights from other caregivers, is much more relatable.  

If you are interested in joining, go to Caregiver Cup Circle.   Also check out the testimonials .