Sunday, July 1, 2018

What This Caregiver Misunderstood About Self-Care

As a caregiver, I know the importance of self-care.  Heck, my friends and co-authors have written books about it!

I know, really know, how critical self-care is for caregivers. 

It is extremely important for caregivers to find a moment to breathe.  To call a friend.  To treat ourselves to a pedicure.  To continue to paint or take photos or garden or spend time with grandchildren – whatever our passion might be. 

All of that is critical to the well-being of caregivers. 

It isn’t enough, though.  Not even close. 

After my small stroke I realized I completely misunderstood self-care. 

Stress can be very deceiving.  Sure, a pedicure can be glorious for an hour and even for a little while afterwards but it does not peel away the layers of stress that build up while caregiving.  What I have learned is that stress wraps you up like a cocoon until you can barely breathe and it does so quickly and quietly.  We may not even realize how ensconced stress is in our very soul because we are too busy caring for someone else (or several someones). 

After my stroke, I realized that pedicures and massages were terrific ways to relax for a bit but it was not the self-care I needed. 

I knew I was a caregiver who gave it my all but I had forgotten to take care of myself too. 

Self-care has to include making time for doctor appointments for ourselves.  I actually went in for my preventative care mammograms and had annual blood work done but I didn’t pay any attention to the results.  I had fairly high cholesterol for years but never talked to my doctor about it.  It didn’t occur to me to mention that my mom also had high cholesterol and that my dad had incredibly high blood pressure.  As a caregiver, I would have logged all of this information for my loved one and informed the doctors and helped formulate a plan of action.  For me?  I didn’t do one thing about it. 
Self-care has to include exercise.  I know – annoying!  This is something I always told myself I should do but rarely did.  I absolutely loathed it when I read how important it was to exercise.  Who were these people who had all this time?  I, as a caregiver, certainly cannot find the time to exercise.  In fact, I convinced myself that the physical labor I was doing for Robert and the constant movement of caregiving was enough exercise.  Certainly the restocking of supplies, taking Robert to and from the bathroom and helping him change his clothes – all of that – was enough exercise for me.  I was constantly on the move until I collapsed into bed exhausted.

That all changed after my stroke.  My doctor said to exercise and, after hits and misses of the best time to do it, I found a time.  I found 30 minutes in my day to walk.  In fact, sometimes I can even find an hour. 

Self-care has to include noticing what we, as caregivers, put in our mouths.  Are we drinking soda or water or too much alcohol?  (I hated drinking water and would often drink soda.  Worse, sometimes I would go all day without drinking anything.)  Stress, hospital stays and other emergencies are terrible for our eating and drinking habits.  This was a very busy year in the hospital for our family and I routinely grabbed a pastry, French fries, brownies or other junk food to sustain me.  In fact, during one particularly stressful time around Easter I literally only ate Cadbury mini eggs for an entire day.  No joke. 

Go ahead and gasp but I assure you I am not the only caregiver to eat crap on a regular basis. 

All of the self-care quick refreshers I’ve written about in the past are important but I also know they are not enough.  What caregivers really need is respite.  I mean a real respite.  A length of time that does not include sorting medications, dispensing medications, taking vitals, washing urine soaked clothes or driving to physical therapy and doctor appointments (all while working full-time).  

A respite that includes getting as much sleep as we need! 

Unfortunately, respite is very hard to come by for caregivers.  It is incredibly difficult to arrange and usually impossible to find.  Robert has a social worker who is supposed to find us 14 days of respite – per year!  I can’t even imagine such a luxury!  However, that benefit is on paper only.  It is actually fiction because there are not enough care homes available for Robert’s level of care.  This creates more work for me to find a Skilled Nursing Facility or other care facility to accept Robert for a short period of time.  Not to mention the cost involved in sending him to a private pay SNF! 

Caregivers need the respite but we have to work our butts off (even more than we already do) to get it.  Sometimes we give up and just live with the fact that respite is not available.  Sometimes we just can’t afford a respite.  Caregiving is expensive enough! 

I am not giving up this year and, especially after the experience with the Skilled Nursing Facility last year, I will make sure Robert is assessed properly so he does not suffer falls again.  I will make sure his medication schedule is attached to the doctor’s referral so he gets his medication when he is supposed to and I will keep my fingers crossed for success. 

I will try not to worry while I am away.    

Self-care is hard work but it is vital and it is more than a moment or two of peace and quiet.

I don’t know if I would have listened to anyone saying all this before I had my stroke but I hope someone listens now.  I thought I was doing enough with pedicures and massages but it was not enough.  I won’t give those up because they are fantastic but they are not enough. 

Not nearly enough. 

Caregivers: you are too important not to take care of yourself too. 

We are worth the effort too. 

No comments: