Often I am asked by friends and family members when am I going to get a job, or sometimes they ask when I am going to get a “real job”.  After much thought, I decided to look up the definition of the word J-O-B.  In the Merriam-Webster online search, I found “job- noun – a regular remunerative position”.  Just to make certain I was crystal clear regarding my understanding of the word “remunerative”, I looked it up, too.  It is an adjective defined as “financially rewarding; lucrative”.

I am an only child.  My mother suffers from Alzheimer’s and has been a resident of a Memory Care facility for going on three years.  My 91 year old father has chronic atrial fibrillation, COPD, and is hard of hearing, and experiences other health ailments common to the elderly.  He would be living alone if I had not moved in with him. Fortunately, he is still of sound mind. But as anyone would be approaching the century mark, his body has slowed down, and it is not possible or safe for him to live completely independently.

So, what do you call a position held by one who is the only person available to care for and able to assume responsibility for managing all aspects of daily living for elderly parents?  The answer to the description of this position is “caregiver”, or “parent patient advocate consultant”, as one of my dear friends in my same situation calls herself.  The description of this position or title is complex and varies from day to day, so much so that it is hard to describe to someone who has not personally experienced it.  The only way to share what it entails is to recount two different events that occurred this past week.  It illustrates just a couple of life’s situations that my Dad, without a “caregiver” or “parent patient advocate consultant”, would have had immense difficulty negotiating successfully.

Last Wednesday morning, the snow started falling heavily.  The temperatures were already well below freezing creating a very dangerous scenario on the roadways.  Dad had been hospitalized the day before, taken from the house at 5:30am by ambulance with a temperature of 103 F, shaking chills, and a low oxygen level.  He was diagnosed with pneumonia, and began treatment around the clock with intravenous antibiotics, breathing treatments, and continuous oxygen.  With Dad hospitalized, I checked the calendar for upcoming appointments I might need to reschedule.  Dad had an audiology evaluation scheduled the following day, Thursday, to see if he qualified for hearing aids through the Veteran’s Administration.  He had waited for over 3 months for the appointment.  But there was no way to make it with him in the hospital. I called the VA number on the appointment reminder to reschedule, and was told that I had to do so within 7 calendar days of the original appointment.  If not, the appointment would be closed out of the system requiring a resubmission and approval all over again from the VA.  So he was rescheduled for the 25 of January, 7 days from the original appointment.  But…..I would have to drive to 70 miles to Fort Bragg, the closest place where an approved provider had an available opening within the 7 day window.  I was told by the lady on the phone I would need Dad’s pass to get on base.  I replied “he is a WWII Navy veteran and does not have a pass to get on the Army base”.  She said I would have to get one, and described the procedure to do so, which was as follows.  Take photo ID’s for both Dad and I, proof of car insurance for me since I would be driving on a military base, Dad’s insurance cards, discharge papers, and appointment information, and report to the All American Gate to submit the request and wait in queue for a complete background check.  Then, hopefully, we would receive approval and get the pass to drive onto the base.  “How long will this take?” I asked.  “I don’t know” she said, but suggested that I arrive 3.5 hours earlier than my stated appointment time of 11:30am.  The thought of leaving for Ft. Bragg at 6:30am with my Dad, to make certain I could have time enough to get a pass to allow us on base, was hard to digest.  But what choice did I have?  This was the U.S. Government at work.

Back to my reason for writing this.  How could my 91 year old father, who can’t hear on the phone, have managed this while in the hospital?  How could he have negotiated through this series of phone calls, scheduling challenges and directions? And how would he get to this appointment 70 miles away, submit paperwork to get through a security checkpoint, find his way to a building he’d never seen to a doctor he didn’t know without help (aka, Me, the caregiver)?

Thursday morning arrives with 8 inches of snow on the ground, and the temperature outside was well below freezing. The call came from the hospital that Dad was being discharged.  Yeah!  I asked the hospital how I was supposed to get him home with the State Highway Patrol telling everyone to stay off the roads?  The nurse with whom I was talking cheerfully said “I’ll be happy to call him a taxi!”   Over my dead body, I thought to myself, and started processing what had to be done to get my Daddy home.  Who would shovel the snow off the walk and driveway enough to allow him safe passage from the car to the house? (Me)  And how would I get out of the driveway and up to the main roads, as both entrances to the neighborhood are uphill?  This situation took me 3 hours to rectify.  But I managed to arrange for a snowplow to be dispatched from the town’s road maintenance office to clear a path so I could safely reach the main road.

I safely retrieved my Dad from the hospital that Thursday afternoon.  I arranged, prior to his discharge, to have his medications filled in the hospital so we would not have to drive in the snow to a pharmacy.  After arriving back at the house and getting Dad settled into his recliner, I sat down to call and schedule the hospital follow-up appointment with his Primary Care doctor.  Before I could pick up the phone, an unexpected call came in from Mom’s residence, which always makes my heart race.  The nurse manager calling started by asking if I got the message she left with Dad a week earlier?  “Yes,” I replied.  “Despite me attempting to return the call, I could never find out who called or what they called about. Dad didn’t get the name or number I should call for follow-up because he doesn’t hear well on the phone.”  “Oh”, she said, and started telling me that insurance won’t cover the nutritional drink that supplements Mom’s diet when she doesn’t eat well.  I asked the following: “Why won’t insurance cover it?  Can hospice help? What is her weight?  How much did she lose when she, along with her floor, was quarantined with Norovirus just before Christmas?  Should I bring in more of the supplement drinks? How do I label them so I know Mom gets them vs. other residents? Did the doctor write an order for the drinks or was it suggested by the nutritionist?”  The follow-up on all these questions will require multiple calls and/ or emails to various staff over the coming days to get the answers.  Add to my caregiver “to do” list.

Everyone at the hospital who cared for Dad, and every staff member at Mom’s resident care facility, has a “real job”.  When they walk out of their place of work after an 8 or 12 hour shift, they are off.  It is possible for them to have a haircut, go to a movie, or have a night out with friends without fear of being interrupted.  Because they have a “real job”, it means they are off from the responsibilities of that job or position after working 40 hours, give or take a few.  That also means there are 128 hours left in a 7 day calendar week that they are free from the responsibility and stress of that “real job”.

I love my Dad and my Mom more than any words can describe.  Mom always shopped for the groceries, prepared the meals, and took care of me when I was sick.  She made sure that I had a clean house to grow up in, and that my clothes were always washed and ready to wear.  Throughout my childhood I was far closer to Dad than my Mom.  He played with me, he gently combed my waist-length hair for hours to remove the tangles, and he donated pints of blood to sustain me through complicated spine surgery I had as a 13 year old.  Dad was always by my side.  He understood me and had patience like no one else when teaching me how to throw a ball or draw a picture with 3-D perspective.  My parents were both caregivers to me, and provided all the love, teaching, and support they knew how to give 24/7.  They were always available for me, and I will always be here for them.  But it is not easy.

So what do I do after I finish 40 hours of the duties of caregiver?  I continue for another 128 hours until the weeks end.  It is not a 40 hour work week, but a 168 hour week that repeats with no time off from the duties of care.  My parents never said to me “we need time off, so you have to take care of yourself for a week while we have a break”.  I truly understand that it was not easy for them, either.

This is not a story asking for pity.  It is an accurate account of what thousands of middle-aged people in my situation live day in and day out.  It is not a “real job”, for that would mean going to an office building or hospital, and fulfilling an employment position with benefits and a set schedule for pay.  I, along with many other friends, exist in this situation day in and day out.  The alternative?  If I got a “real job”, I would have to hire someone else to navigate the complexities of managing my parent’s lives that I do on a daily basis.  The cost is staggering to hire someone to do what I do for no pay.   Plus, if I hired someone else to manage their care, many of the decisions required on a regular basis would necessitate my input so I would still have to be available all the time.

To hire someone to assist Dad with cleaning the house, maintaining the yard, buying the groceries, preparing nutritious meals, paying all household bills, car maintenance, managing the financial requirements for Mom’s around-the-clock care (including working with their broker to sell off their hard-earned retirement to keep Mom in her facility}, scheduling doctor’s appointments, preparing their taxes, etc…. The list is endless, but the hours in a day are finite.

The real reason I felt compelled to write this is twofold.  First, to anyone who knows someone who is a full-time caregiver, recognize that it is insulting to ask them “when will they get a real job”.  Understand how isolated and alone they feel when they are trying so hard to keep life going for others at the expense of their own. Know that they do what they are doing out of love and necessity, so don’t make them feel guilty because they are not employed in a conventional manner.  Understand that, if you ask them to join you out for dinner, the reason they might decline is not because they just don’t want to go. Is because they have to make certain they prepare and serve dinner for their parent, and make sure their father takes “one pill 30 minutes before he eats” or it will not be effective.  They also need to be present when their parent takes their nightly shower in case of a fall.  What they are doing is hard work, just like raising children.   Children will grow up, and their parental support will decrease. But as parents become elderly, their needs increase.  So does the caregiver’s responsibility….my responsibility. And the more they need, the more I am required to give.

Second, to other caregivers out there, you are not alone.  Only people who have selflessly taken on this role of caregiver can truly understand the joys alongside of the demands the position requires day in and day out.

It is a privilege to be a caregiver, and the definition is very different from that of a “real job”.  For anyone who has moved beyond caregiving and finds themselves no longer required to fully manage an elderly parent, you should be completely qualified to hold almost employment position you seek.  You will be the most organized, multitasking, accountant, chauffer, cook, cleaner, secretary, personal assistant, health care worker and negotiator that anyone interviewing you has ever met.  But you won’t have the personal references for a prospective employer to call to vouch for any of these things.  All the experience you have gained over the previous months and years of caregiving will not prepare you for any “real job”.  But you will know how to arrange for a snowplow to get you out of the house if required, and you will know the satisfaction of accomplishing what you thought yesterday was impossible.