Our family’s dedicated yet difficult journey of advocacy
and ‘end of life’ at-home care

 A message to one of my best friends who is a psychiatric nurse:

Facebook Messenger Log
Jan 07, 2022 4:14:06pm
Amy Pyle Mickle

“Hello N.,
I wanted to give you a quick update. Dad has been the ER since 230 yesterday as he has a liver blockage and pneumonia. Dr. P. is away so they are trying to transfer him out; But there are no beds available anywhere. My Dad is a very needy patient and the nurses are going well beyond the call of duty here in the ER. So I went down and bought an assortment of your yummy treats and the staff is literally gobbling them up. I learned a while back that if you take good care of your healthcare team they’ll likely continue to take good care of you and your loved one. Also, my mom is home and is very sick so she can’t be here…Waiting is the hardest part… Just thought you would like to know.

 Acute, specialized care

So, at the beginning of this journey, as the first-born and the only local child, I decided to take a leave of absence from my job as a university mental health counselor and apply for Family Medical Leave. Dad was eventually transferred to another hospital 2 hours for specialized diagnosis and treatment.  The multi-disciplinary medical team stated that his cancer did not have a good recovery rate but attempts would be made.  Since Mom was at home and unable to travel, my sisters and I had to make important decisions with Dad.  I recall, being alone in a dark hallway with my Dad with the surgeon and signing off consent for him to have a risky and potentially painful surgery.  I turned to my Dad and said:  “Dad, remember you are a tough Green Beret”.  I didn’t know what else to say.    Consequently, two stents were inserted in but neither was effective.  While Dad was there, my siblings and I served as strong advocates for Dad asking lots of questions and collaborating for his care.   In five days, Dad saw ten doctors which included several attending physicians.  Staffing was short, beds were few and many providers were burned out from the demands of practicing amidst the pandemic. We followed his labs closely on his portal but became frustrated with the complex process.  During one consultation with a doctor, the gentleman stated:  “Ladies, I am not going to lie, health care right now is a ‘sh_t, show’.  In a strange way, his words were comforting knowing that he was frustrated as well but that everyone was doing their best to plug the holes poked by Covid.

My father was not a good patient. One late evening, Dad became agitated and confused and called 911 three times reporting that the nurses were trying to make him use a bedpan against his wishes.  It is important to know that my father was a former policeman in the Pittsburgh area earlier in life.  One of the nurses shared with us that they had seen this behavior before and that folks in law enforcement have an unspoken commitment of brotherhood to watch out for each other.  Fortunately, after 8 units of blood, Dad was alert and coherent enough again to make the decision to go to a local residential hospice to die.

To say the very least, the hospice program, staff, and accommodations for family were amazing and generous. Dad was admitted for the 7-day stint but then had to be discharged as he did not pass as they had anticipated.  While there, a local veteran’s organization provided an impromptu ceremony recognizing Dad for his service in the army as a Green Beret.  It was a wonderful surprise! Meanwhile, the social worker informed us that Dad would need to go to long-term care or go home.  DAD, WANTED TO GO HOME!  While we agreed, we had no idea what we were getting into regarding managing his care.  Assuming that help was just a phone call away, we arranged to have Dad transported back home with a catheter, a bilirubin drain, oxygen and medications.  The discharging hospital made a referral to the local community hospice to assist us with his care.

Once home

We met Dad at home and I began calling agencies and private home health care workers to arrange a care schedule.  After reaching out to over thirty individuals and providers, we had only one agency that could provide a few mornings a week.  With this said, Dad was bedridden and required 24/7 bedside care and none of us work in the medical field.  Nonetheless, extensive Durable Medical Equipment was delivered to my parents’ small cottage-like house in rural Pennsylvania and the program nurse of the local hospice agency met us at the house.  While we were eager to get help, she informed us that due to the pandemic, she had no staff.  I can still recall sitting at the dining room table with her and my mother, and it was as if all the blood left my body in a panic.  I thought to myself:  “How in the hell are we going to take care of Dad with very little help…what did we get ourselves into?”.  Well, fast forward, we all put our Girl Scout feet forward and began caring literally for his every need and want.  As we started, we realized that the discharging facility gave us only three diapers.  We live in a very remote area with very limited resources.  So, we put our creative minds together gathering “chux”, maxi-pads and first aid tape and made what the hospice nurses referred to as our: “MacGyver Diapers”  We became very familiar with that special -pink cream “Calmoseptine” that literally does not wipe off but make an amazing barrier to prevent adult diaper rash.

After firing the first hospice, we searched for and found another hospice agency that did have staff and were very professional and extremely helpful.  What we came to learn is that they would come twice a week for a few hours and be available for consultation and guidance. Consequently, my sisters and mother and I took 8-hour shifts round the clock to care for Dad in the living room.  Very unfortunately, since we had to change in hospice providers, we had to have all of the DME returned to the hospital supply and obtain all new equipment from the vendor associated with the new hospice.  At this point, it was a true “cluster f_ _k”! We did not know whether to laugh or cry!  Health care decisions are driven by insurance and profit.

Meanwhile, my family and I very organically took on different roles in my Dad’s care:  My middle sister became the emotional support person (a “Mary”) and my youngest sister and I (the “Marthas”) were the bedside care and medication supervisors respectively.  Our 84-year-old mother was the calm and steady coordinator of it all.

At one point during my shift, I will never forget during one evening with Dad around 3:30 am, Dad quietly asked me: “Em, should I fight or should I let go?”  Being a mental health counselor, I automatically switched into my professional mode and refrained from giving my opinion. Instead, I responded with a question: “Dad, if your best friend were in your situation, what would he want him to do?”  He nodded his head and smiled, knowing the answer but not saying.  It was not important to me what he surmised.  All that mattered was that he was content with the answer.  During his care, Dad stated: With all of you girls around, “I feel like a baby”!  I initially responded feeling badly that a strong, prideful man would feel like a powerless infant, but on the contrary, Dad felt that all of his needs were being met and it was a very reassuring feeling for him.

I have to brag that my sisters and I kept an amazing medical log:  Documenting Bilirubin output, O2 levels, urine output and description, and medications…the visiting nurses commented that we would make any nursing home director of nursing green with envy. Strangely, as the assistant to my sister the “Master Diaper-er”, I found myself knowing more about the intimate parts of my father’s body than my own or my husband’s body.   To be honest, it was a bit awkward both for Dad and us but we knew it had to be done and we did it with grace and respect.  Somewhere along the line, we were so overwhelmed with the personal care process that I gave my dad a bikini trim haircut. We quickly discovered that changing an adult diaper is like trying to remove p-nut butter from grass.  I know, this is TMI, but then again, you are physicians!

Nursing home admission disaster

As we continued to care for Dad’s every need, we all became very emotionally and physically spent and fatigued. A turning point came when our mom took a fall in the living room when she tripped over an electric cord sticking out from under the hospital bed.  After this, we felt very defeated as we were wearing thin on energy and determination.  We all agreed that we had to get Dad into long-term care against his wishes.  My mom made arrangements for nursing home admission including: an extensive meeting with the social worker, lots of paperwork (MA 51), and staying up all night getting his clothes organized and labeled.  The transporting ambulance was to pick up Dad at 9:00 am. At 8:00 am, we received a call from the nursing home stating that they could not accept Dad as a patient since our hospice workers could not provide proper documentation showing that the staff were all immunized with the COVID-19 immunizations.  In that moment, dreadfully, we knew that we were in this for the long haul whether we felt capable or not.  As Dad worsened and weakened, we began using the hospice “comfort kit” as provided to be used during the end days.  Each of us felt differently about the morphine as we learned that there is a fine balance between “snowing” and pain management.  I tended to push for his ultimate comfort while others insisted that he be as aware as possible during his last days.  As the hours and days lapsed, Dad was fading away.  It surprised me to realize that I found that the process of death strangely fascinating.  I watched as the mottling of his skin spread and worsened. Yet, at the same time, I had the honor and privilege of literally holding his head with one hand and holding a stethoscope in the other, listening to his heart gently slow and stop.  As the hospice nurse called his time of death, my youngest sister and I looked at each other and said: “We did it!”  giving each other a HIGH FIVE!  The nurse noted that she had never seen this kind of reaction from a family before but knew exactly what we meant that with their help, we gave our Dad a “good death”.

Feb 01, 2022 6:57:48am
Amy Pyle Mickle

So things are morphing here…we are all spent both physically and mentally…Hospice workers were supposed to come today but called and had to cancel…my mom fell today…Defining moment… I called the hospice social worker and we are looking for a nursing home opening…We gave it our all and don’t regret it but now we are at the end of our abilities to meet his needs. Mom agrees…She will be calling around tomorrow. Night relief coming at 11p and home health workers in the morning to bathe…

A.D.

We anointed my father’s body with Frankincense and sang his favorite song, “Edelweiss”.  The coroner arrived and was much too happy and boisterous for our weariness.  Well-meaning family friends came to visit as well acting the same way. Honestly, we just wanted them all to go away and give us some privacy and quiet time with Dad.  To be truthful, we were more exhausted than sad.  It is funny the things we do are irrational; but totally make sense in the moment.  As my father was taken out, my sister asked the funeral director to please turn on the heat in the hearse so my Dad did not get cold. As we were all frazzled, we had no energy to do a funeral or visitation.  The thought of it sounded dreadful.  Instead, a few months later we had a wonderful Celebration of Life for Dad and sprinkled his ashes around his favorite hunting spot.

Post Script

Personally, I have had to increase my mood medication and return to therapy to process the whole ordeal.  Yet, in some strange way, I feel closer to my father now that he is gone.  As a family, we will never regret caring for Dad to the end, but it was truly one of the hardest things we have ever done.  While I did rise to the occasion, in retrospect and introspect, I feel that I had to give up my role as a daughter and become a caregiver.  This is not what I was hoping for but I do believe it allowed my Dad to be at peace with dying.

Moving forward, I have committed to donating 8 units of blood in behalf of Dad’s transfusions. While they were not life-saving, they did allow my father to be lucid enough to retain the dignity of making his own ‘end of life’ decisions.

Thinking of others’ dying, I honestly do not know how patients who do not have family or loved ones with them in the hospital advocate for their care.  It truly takes someone to ‘take the helm’ and work with the health care providers.  Sadly, we saw several people dying alone in the hospice unit and it was truly one of the most depressing sights I have ever seen.

Finally, I recently re-visited Dad’s hunting spot where we spread his ashes and I found many pea-sized pieces of his remains that had not washed away with the rain.  It may sound morbid, but I picked them up piece by piece and took them home to store in a jar with my children’s baby teeth.

I am so glad that we helped my father die a ‘happy death’ during a very trying time in our global lives.  I did not think we could do it, but WE DID!

“We can do hard things.”
~Glennon Doyle

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