Caregiver burnout: The Cost and Management

My second bout with caregiver burnout was far worse than the first by magnitude.  It “hit me like a ton of bricks.”  Gini was well into her second recovery, physically–many times improved since surgery at the NIH; mentally–improving steadily in memory and emotional state; functionally–she was wanting to begin managing the household again.  Me, I was essentially two years behind her still in the mindset of a full time caregiver.

Only a couple of months into 2012 and we sat in our bedroom discussing as it were what would come next.  Gini made a statement that literally threw me into a tailspin.  I stood up and stated, “I have nothing else to give” and walked out.  I had hit the wall of caregiver burnout, and it was as hard as any wall I have ever hit in my life–be it athletically, that is, physically to go until you do not think you can take another step; or to be so sick that you think the only way to improve is to die.  I was emotionally drained, physically exhausted, and mentally empty.

Caregiver burnout is as bad as, or for me worse than, depression.  I suppose some clinicians and doctors would say there is little difference between the two, but I would argue there is a great difference.  That discussion will wait for another time.  Somewhere in my readings, I vaguely remembered something, caregiver fatigue I thought, but it was enough that within minutes of my Internet search, I found caregiver burnout.  I was tired not just physically but tired of everything I was experiencing and everything I had to do to care for my wife.  I was attempting to be faithful in a ministry position; continue as the bread winner in the household; and care for my wife’s needs, all full-time jobs.

Here is a quote from my first article about protracted illness:

We were both in our mid-fifties, physically active, and in colloquial terms, “healthy as a horse.” I had experienced kidney stones half a dozen times, one taking six weeks to determine positively, unequivocally that it was a kidney stone causing my symptoms.  That was a personal nightmare.  My wife, Gini, had experienced childbirth six times and the last one culminated in postpartum depression that was not identified nor diagnosed by anyone.

I had never used the word weary before and certainly not to describe my feelings or condition.  I had read it in literature or in an article, but I had literally never used the word in a sentence.  As I was thinking about why I felt as I did one day in late 2011, the word weary came to mind and I thought, “that’s it, I’m weary.”  As I thought about this realization, I recognized what weariness actually was.  Here is some of the definition from
1. physically or mentally exhausted by hard work, exertion, strain, etc.; fatigued; tired:
2. characterized by or causing fatigue
3. impatient or dissatisfied with something
4. characterized by or causing impatience or dissatisfaction; tedious; irksome
To this I would add: mentally, emotionally, and spiritually fatigued or exhausted.
All of these defined the wholeness of my feelings and state.  I was weary.

I think my education helped me.  I had just enough presence of mind to realize something was wrong, and I had heard about it at some time in the past.  My faith was my bulwark, and I know that I could not have endured the frustrations, stress, loneliness, et. al., I experienced had I not been able to call out to my Father as I did so often during the days and nights.  Weariness had set in like a very long winter’s night perhaps like the nights in Alaska when there is little or no sunlight.  I could see no end, and by 2012 I was functioning like an automaton; almost everything was done because I had a system to reduce work and or redundancy of work.

I remember nights when I would lay down in bed and have this massive sigh come out of me.  Every part of me was tired, weary.  At times, I felt like I was too tired to go to sleep.  I have actually had this feeling but during this time as a caregiver I really don’t know if it was being so tired or if I was drained of all my energies–mental, spiritual, emotional, and physical.

Gini had osteoporosis caused by the Cushing’s so there was a very real danger of a fall and bone injury.  That would have been catastrophic.  Her body was fighting to throw off the symptoms of the Cushing’s and return to normal.  It took ALL her energies to recover.  A broken hip, leg, or shoulder could have been a “worse case scenario”.  It was only when I made sure her needs were met, and she would settle down for a while that I would go get a short shower.

My shower, it was my brief haven when I would talk to God.  If you have read the previous articles about our trek with a protracted illness, then you know that I pray and talk to God often in the course of the day.  You also know that there were days when I would get in the shower and all I could pray was Psalm 13:1.  I would ask questions like: “Have you forgotten where I live”; “Will this ever end”; “Is this the new normal”; “Have you forgotten my address”?  All of these and others were pure nonsense but for some reason I had to ask MY Heavenly Father.

Fortunately, I had been exposed to a man that had lived and studied the book of Job in the Old Testament.  He had suffered greatly including the loss of a close friend, wife, and child in a small aircraft crash.  He had massive injuries on top of the personal losses.  Having studied this man and the book of Job, I knew it was okay for me to ask hard questions, questions that likely had no immediate answer or questions that served no purpose other than to allow me to vent my frustrations.

What to do
I cannot close this article without sharing some hope.  As I studied caregiver burnout, I found a list of steps to take to help mitigate the symptoms that are more like a parasite than a symptom.  Here is my rendering of those steps:

  1. Eat well.  Do not underestimate this need.  Your body is being drained at least in the short term of energy resources.  The physical, mental, and emotional stresses consume much energy.  You must eat well and NOT overlook your own body.  If you are able, retain a “normal” eating schedule; your body will thank you.
  2. Engage with those that bring meals, come to see the dependent person, or ask how they can help.  You need outside contact to keep your mind and emotions refreshed.  Do not politely thank them and quickly return to your tasks.  I am thinking about the short conversations that you can have anytime the opportunity presents itself.
  3. Allow yourself to talk to those that care enough to call or stop by.  YOU NEED AN OUTLET.  You must talk to someone or the stress will build up like an old pressure cooker without an opening to relieve the pressure.  It will blow the top and that is dangerous.  Your conversations with others, whether they understand or not, is your outlet.  It relieves some of the stress and does so a little at a time.  Here I am thinking about longer, 20-30 min. or more when you have time to truly let down your guard and share your needs.  At times when the dependent person is sleeping during the day, you can allow yourself to take a longer call or visit with someone that stops by.  These conversations can be as restorative as the short nap.
  4. Develop a system or method to get needed housework, or whatever done.  You do not have to do things the way they have always been done.  You’re in charge.  Make life work for you.  For example: I hand washed all the dishes so that I could do one meal at a time and have the cooking and cleaning in the kitchen done.  I did not leave things for hours or days to add to my stress.
  5. Rest!  I know it is hard, but do it whenever you have the opportunity.  Your rest may include short naps–better than no nap, reading, watching something on TV that is totally distracting.  Just rest your body and your mind!
  6. If you pray, do so frequently.  Notice I did not say pray on a schedule or a set time.  Such an expectation can completely fail when you are a full time caregiver.  St. Paul said, “pray without ceasing.”  At least one application of this concept is to learn to pray short, quick prayers when you need to release some stress or feel overwhelmed or discouraged and your dependent needs you NOW.  I prayed, well, more like complained to God, when I was frustrated having to fix three different meals for Gini to find something that would not increase her nausea.  I prayed when I would finally get to lay down for a few minutes rest, usually just a prayer of thanks for the moments of reprieve.  My daily prayer time came during my 10 min shower each night.  Somewhere along the lines of life, I learned to talk to my Lord all during the day so when Gini’s illness came, I applied that concept all day long because the demands and needs for her care were so great.
  7. Get or accept help!  Often this is not something you can control.  I know I did not have much support from our local church in this matter.  A couple of ladies did come and sit with Gini for a day, but 2 days in months of intense care isn’t enough.  An old friend of Gini’s came to visit and provide me some much needed relief and stayed a week.  She is a nurse and that was nothing short of a Godsend.  If you have the opportunity to allow someone to take a day or two or more of the care-giving, accept it without GUILT.  You need it.


Other Encouraging Signs with Dementia

I was awake because of back pain last night.  I happened to hear Mom or the aid talking so I got up and went downstairs.  Most of the time when I enter the scene in the middle of the night it is to try and help with Mom.  Last night was very, very different. We… Read More