Trust Me…I’m No Saint

For myself and many others, I often hear “I don’t know how you do it!  You must be a saint.”  This is in reference to caring for my husband over the last 6 years.  Mark and I were married for 18 months when he had a subarachnoid hemorrhage due to an undiagnosed genetic disease called Moya Moya.  That day our lives changed forever and Mark was no longer able to care for himself.

Since that time, there have been many ups and downs.  I have had victories and defeats, just like all of you other caregivers out there.  The funny thing is that I had been working in home hospice as an registered nurse, then a nurse practitioner for many years before this happened.  I had seen first hand what caregivers go through.  At least I thought I had seen it.  In reality I had no idea.

I would love to say after all of this time, I am the perfect wife and caregiver and I’ve got it all figured out.  I don’t.  Some days I just sit and cry for 20 minutes at the loss of the man I married and the full-time patient I have acquired.  Some days I’m so jealous of those around me who are enjoying being married to an equal partner.  The one thing I have learned is that all of these things I feel are normal and happen to most of us.

Women make up the majority of family caregivers.  Most of us are putting in more than 20 hours a week of tasks related to caring for our loved ones. Believe it or not, more than half of us have been at this for more than two years.  So yes, it’s kind of a big deal.

We have a greater risk of anxiety and depression.  We often have compromised immune systems due to the constant and chronic stress.  We are at risk for early death.  This is no joke.  Being a caregiver is hard.  Here’s the good news though, we have the ability to control how we handle this situation and avoid becoming some sad story our friends discuss in the most pitiful ways.

Self-care, ask for help, you’re not alone, find a support group and on and on.  We’ve all heard and read all of these things.  Don’t get me wrong, they are valid and important.  For myself and the thousands of caregivers I have worked with, the one thing I do know that makes the difference is that you must work on coping DAILY!  Not once a week, or a month or twice a year, but every single day.

Personally, I have a very rigid schedule with very specific tasks I do every single day.  Even when I don’t think I have time.  Even when I don’t feel like it.  Even when the world around me is in chaos.  They are non-negotiable and they are the things that keep me sane, healthy and grounded despite this life I have, that I did not plan for.

Things that you can do, that take just a few minutes and that can be done daily include:

  • Journaling: This has enormous benefits, including increasing your own memory, decreasing stress and anxiety and allowing for you to have a place that will not be critiqued or judged for just being 100% honest and transparent about how you’re feeling.
  • Stretching: This sounds too easy, but honestly the evidence doesn’t lie, stretching can do your mind and body good!  Stretching increases blood flow, improves circulation, enables your muscles and your brain to work more efficiently and prevents injury.  Especially good for those of us who are required to stoop, bend, transfer and bathe our loved ones.
  • Faith: So this is a big one for me as a Christian, but whatever your faith base is, connect with it daily.  For those of you who may have had a history of attending faith meetings, whatever faith base you practice, many are now online, which may be an option if it is too much work to get to the meetings.  Faith communities may also be able to provide support, resources and most of all hope.

While this list is obviously not all inclusive, it’s three small steps you can consider taking to help you to navigate the daily challenges of life as a caregiver.  It doesn’t mean you won’t have bad days, hours or moments.  It doesn’t mean you won’t be frustrated, exhausted, or overwhelmed at times.  It does however put you in a position of accepting your role and finding your power to do what you need to do to thrive despite your circumstances.

My motto is that I may go down, but you better believe I will go down swinging.

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