Caregivers…spirit, mind and body.

Through the five years I took care of my mother, as her dedicated caregiver, this will be the first blog I write to share my exhaustion and frustration – since I also worked full-time with a family of my own.

I can honestly look back at those years now and wonder how on Earth did I ever do it?  How did I work full-time for a school system?  Raise a 14 year old son?  Take care of my home, chores, family and myself?  Have conversations and hugs with my husband and best friend?  Mom always took first fiddle.  Everything else was brushed aside.

The first honest clue I can offer – is I neglected myself.  I thought I was super woman and could handle anything.  It took a physical and mental toll on me – as I realized toward the end that I had to start telling my mother “NO” I could not visit her and again bring her money…I was just there yesterday and the weekend before….no, I’m not going to the bank and drawing out cash for you….I was just there.

My son had just entered high school.  He was very active in school sports and outside activities.  My husband who is and has always been a hard worker, worked 13-14 hour days until we finally moved back to the Peninsula from Gloucester, Virginia making it much more feasible for him.  He was exhausted with his long work hours – and then the long drive home, each and every night.

My dad passed in 1999 leaving me with no idea as to the desperate situation mom was in.  After he passed, the nightmare began.  Mom was apparently well into the confusion phase – unbeknownst to myself and her friends.  The phone calls started within two days of dad’s passing.  Those phone calls asked me if I knew where my father was?  Mom said he wasn’t home yet and she was concerned about him.  This was merely a sign of things to come.

Mom was not moved to ALF until a year after dad passed.  That was a joyous day in my life, and I can thank mom’s elder attorney, doctor and adult social services for this progression in her status.

After dad passed, the severity of her illness became apparent immediately.  The phone started ringing each morning before I even left to go to work.  My neck tensed up as I walked out the door.  I had to get a teenager up and ready for school as well as myself, two dogs, and straighten the house.  My stomach stayed in knots during the day – I knew what was awaiting me when I returned home.  I was not disappointed, there were over 15 phone messages, each one from Mom.  I tried to help her, I called her back and many times, I drove to her home or the ALF after work to console and help her.  When I returned home, she had already called the house again while I was on my way home.  An instant and unrelenting headache began.

I could not appease her, talk to her, or have a discussion.  She was no longer capable of retaining a single syllable I said to her, thus she would call back again.  There were nights that by 10:00 pm I was ready to throw the phone receiver out the kitchen window.  We got “caller ID”, we had no choice.  I let it ring. I let the messages pile up, I had to – my head was pounding and I had gotten nothing done, and none of us had family time that night and many nights after that.  Mom’s care was actually consuming me, my husband and my son.

There were many times before mom went into the ALF that she would simply show up at our back door.  My mother was a proper lady and never popped in on other’s – instant red flag when she drove to our home, especially at night.  I would offer her something to eat and drink and have my husband follow her home so she would not get lost in the dark.  That was another issue that had growing concerns, her driving.

I did not get enough sleep – and the phone calls from Mom would go until midnight and later.  We had no choice but to take the phone off the hook.  There were many nights I sat up alone doing her paperwork, bills, taxes, and filling in my journal for the elder attorney’s files.  My sleep was even more depleted with many late nights of paperwork.  Still, I knew I had to go to work the next day.  At 2:00 a.m. one particular night, I made up my mind to call in “sick” the next day, I just couldn’t function.  I needed a day of peace and quiet and more importantly, serenity.  Yes I felt guilty taking a “sick” day – but I earned them and needed one desperately.  What a wonderful day it was….I’ll never forget how much it refreshed me…just that one day.

I’m sure my blood pressure was elevated, I had no appetite, I was tired all the time, my neck and shoulders ached constantly from the stress, I was “snappy” with my family and friends, and I was very resentful of my dad.  How could he do this to me? How could he not let me know mom’s condition?

Once I got over my self indulgent pity party – I sucked it up and continued to be the voice for my mother.  I protected her, kept her safe, maintained her dignity and independence, and enveloped myself into her care.

When we moved to Hampton in 2000 – I had not only our household to move, I had to pack up and sell mom’s house as well at the same time.  This was a tremendous burden for myself and my husband   But, mom, was finally in an ALF.  She was safe and well taken care of.    The previous year’s strains on me physically were starting to show. My stomach was upset, my head ached all the time, and I had no time for myself.

I deeply missed the Gloucester School employees I had to leave.  They were “rocks” to me on days I didn’t think I could go any further.  One late night on my last driver over the Coleman Bridge the cold and dark water below, beckoned me.  If only for a second, I contemplated driving over the concrete barriers and into the cold water…..I had reached my limit.  Instinct and common sense took over – my husband and son needed me – so I continued my straight drive down the bridge into Gloucester.

I did tell mom’s doctor that mom was not going to live with us.  He had proclaimed that mom was a “danger to herself” and should no longer be living alone.  My answer was a swift and firm – NO mom cannot live with us.  I would have suffered a nervous breakdown – I could not handle her in our home.  I knew that if we had taken her in, that as soon as I left for work (husband and son already gone) – that there was a good possibility that she would walk out the front door and get lost in Hampton.  She could accidentally set our house on fire, let my dogs out, lock herself out of our home, get attacked by a stranger as she walked around searching in vain for her husband, or worse yet – find herself on a busy road – with dire consequences.

I would never have been able to live with the guilt if something had happened to her.  I had to work, I did not have the financial freedom nor option to quit my job and be mom’s 24 hour caregiver.

I salute each and every caregiver.  I send them all love, encouragement and support.  I have been there…and know the strains on my body, mind and spirit.  It made me a stronger woman and more determined than ever to be the best caregiver and DPOA that my mother could have.  Working full-time with your own family to care for – causes a strain to not just the caregiver, but the entire family unit.  Thank goodness I had a strong husband who was my staunch supporter and friend during this process, without him it would not have been possible.

My body buckled under the strain.  My mind caused physical illness as it fought for sleep, relaxation and freedom from frustration.  My spirit crumbled on more than one occasion and caused guilt on my part for not being the perfect caregiver for my mother.  I shed tears out of everyone’s sight as I snuggled on our bed in the fetal position…hoping for some sort of break – a break that would never come.  It was an intense five years, but also 5 years of loving and appreciating the woman who gave birth to me.  It was no longer mom speaking, it was the disease, nemesis of Alzheimer’s.

I miss you Mom….

SUZ