Racing With Time and Frailty
By Sue Smaltz Burrus

L to R Mom, Aunt Janet and Aunt Doc

“Your generation will fix these things for us, right?” my adult daughter asked.  “We are definitely going to need fresh vegetables, good coffee, and reliable internet access!”  Over a number of years, I visited my mother and two aunts in different states, geographically, as well as states of living and being, and while vegetables, coffee, and internet might seem luxurious measurement criteria, I found them to be useful - with one addition, easily accessible hospice care.

            Years after my father died, Mom sold her house for an excellent price to the university in my home town. They wanted the space for a parking lot. The three-story victorian home she bought needed work. Each room had a fireplace and wood work of a different type - butternut, oak, cherry. The dining room floor was striped, maple and walnut. In between sewing customers, Mom refurbished everything, refinishing every inch of that woodwork. As children moved out and heating costs rose, Mom decided she needed to downsize. Apartments she moved to after the big house got smaller, and gradually much of her furniture migrated to her friends and family.  By 2006, she lived in one room in a continuing care facility, which she called “The Home”.  She bought into the system at the independent apartment level with the promise that whatever care she needed would be provided.  She was now at the assisted living level. She needed help with bathing and managing oxygen tanks. She was generally content there. The sign on her door read, “So it’s not Home Sweet Home - Adjust!” She still had her sewing table set up in one corner and several favorite pieces of furniture - a wing back chair, the buffet. Her room maintained a sense of the quiet elegance of her former homes. She could still play Scrabble in the library, and usually won. However, every week she got a menu with choices for three weeks away.  “How to I know what I’m going to be hungry for, three weeks from Tuesday?” she asked in disgust as she randomly checked boxes.  She had congestive heart failure and was supposed to be limiting salt, but when choices are a ham sandwich or sausage gravy on biscuits, it really doesn’t matter much. We decided they needed the three weeks prep time to cook the vegetables - carrots were orange mush, beets - red mush, string beans - green mush (with a bit of bacon of course). Coffee was sort of brown, more liquid than mush. Most days she missed having a choice of dining companions, and loved when guests came so she could have meaningful dinner conversations, current events included.  She always ordered a slice of toast and a banana for dinner and hid them in her bag to take back to her room so she didn’t have to get dressed for breakfast.  Internet access?  Residents had none. When the coffee shop across the street was open, I could send an email. Mom’s last days in 2007, were in the hospital. All of her five children had tried to get her back to “The Home” and into hospice care in her own room, but her doctor delayed giving the order. The hospital staff recognized she was transitioning and brought in comfort care for both Mom and the family.  Finally, the hospice orders came through and as soon as they did around 10pm, Mom’s bed was whisked out of the comfortable progressive care room where she had been for the past several days, and taken up several floors to a regular, sterile, somewhat shabby hospital room at the end of a hallway.  As the five of us gathered, we were thankful she didn’t have a roommate. She died early the next morning after some had gone to get some rest. Mom’s money for her monthly rent had run out several years before, but because she had bought into the system, “The Home” covered all her expenses through to the end. We were eternally grateful to her for making that decision, and to “The Home” for following through.

            Aunt Doc was a retired teacher. She kept track of every penny and lived a frugal life as she watched a new retirement community being built from the ground up. She got her reservation in early.  When the building was finished, she sold her house and moved to a spacious third floor apartment.  She loved that building and the gardens that surrounded it.  Every time I visited she sang its praises.  Residents could have their own garden beds. People worked jigsaw puzzles in the library. Evening dinner was the only meal served in this residence.  The vegetables were fresh; the coffee, as strong as Minnesotans required.  There was a locked pantry by the “Coffee Stop” that residents could access with their apartment key and buy necessities like milk or cereal or canned peaches, by signing out the items on the paper by the door.  The charges were added to their monthly bill. Aunt Doc set up a lending library with her many video tapes and kept meticulous track of it all.  As she slowly slid into dementia, Aunt Doc began to collect the half & half containers on the tables in the dining room to pour over her Cocoa Puffs.  She had no children. I was her medical power of attorney. In 2011, I recognized her dwindling capabilities when I saw that the cheesecake Aunt Janet had sent for her birthday in December was still in the fridge six months later and she didn’t want me to throw it out. I knew I had to stay longer than the usual visit to assess the situation and help with next steps, so I brought work with me.  The only internet access was in the large dining room, limited even then.  I learned to check for the green light on the router box hiding in an upper corner of the room. At night, Aunt Doc could see the lights of the airport from her window.  “Look at all those planes,” she commented. “I feel for all those young men going to war.” She was talking about the war in Europe… 1940’s.  The canned peaches in her cupboard were long past their expiration date.  She needed more care but her lovely retirement community had no official assisted living or “memory care” options.  Luckily they did have an understanding with another institution that did provide the services needed and she went to the top of the wait list. It was a wrenching move. The facility Aunt Doc ended up in provided both tangible and intangible “comfort care”. “I just want to go home!” Aunt Doc moaned. When she first moved in, I learned that the “home” she longed for was sometimes New Jersey where she had grown up, sometimes her Minneapolis apartment from 1948, and sometimes the “place where there was a chair that went up and down” (the rehab facility). We found a chair that went up and down. Every staff member who passed her open door greeted her by name and told her how happy they were to see her. Gradually, she understood that she was an appreciated and valued member of the community. There was a small kitchen in the dining area.  If a resident wasn’t hungry for the entree of the day, they could request a grilled cheese sandwich or some soup and staff could quickly prepared it.  Ice cream was always available in the fridge.  Hospice care happened seamlessly in the resident’s familiar room.  In 2013, when the time was near for Aunt Doc, the chaplain and nursing staff gathered family and residents who wanted to say goodbye.  The chaplain led a brief gathering, affirming the dying person and letting go. 

            Aunt Janet was, like Mom and Aunt Doc, a fiercely independent woman.  In 1947, toting the pistol her father gave her, she ventured into the wilds of North Dakota to work for Easter Seals. Like Aunt Doc she never married. Her nephew and nieces were “her children.” In the world of the 1950s - not quite ready for professional women, Aunt Janet ended up on the 13th floor of the state capitol building, the State Director of Special Education. She was a decision maker, an administrator, accustomed to living life on her own terms. However, years after retirement, when she could no longer carry a tea kettle or a small pot of water from her stove to the sink in her spacious apartment, she started to consider assisted living. Although Aunt Doc tried to entice her to Minneapolis, Aunt Janet said didn’t want anything “fancy”. She shook her head at the luxurious amenities advertised by some facilities. “Not interested.” With the assistance of a caregiver she had hired, she finally found an acceptable place with her own apartment. She gradually settled in, finally giving up her car to the North Dakota ice and snow.  She went to the dining room for three meals a day and provided lunchtime piano music. Coffee was institutional and vegetables somewhere between mush and fresh. It varied with the chef of the day. Internet access gradually increased over the years I visited her there. Several residents kept track of baby eagles via remote wildlife cameras. In 2009 she wrote a poem about her new life:

RESIDENT IN JANUARY

  

The winds of age

Have blown each of us

Here.

One hand holds a family

An arms length away,

But close enough

To call to.

The other, the reins

As Time and Frailty

Race from day to day,

Over rough and unfamiliar ground 

Moving inexorably 

Toward crisis.

Each of us brings years

As different as light and smoke,

But group together in mourning Change

From home to where we are.

Memories, sweet,

Survive for recitation.  

Bitter ones die.

Games, guitar music, and 

Bible study, become life.

Food is prescribed and monitored

Without delight.  

We go nowhere. 

Then again, I feel strength

From two or three souls

Whose spirits challenge mine,

And for an afternoon

We laugh and enjoy

What’s left of us!

            As Aunt Janet’s physical needs increased she moved up the levels of care, at additional cost of course. Her apartment was the farthest one possible from the dining room.  She went from walking to meals, to using her speedy 3-wheeled walker, to a motorized wheelchair.  She had always loved to drive.  “Beep-Beep-BEEP!” She signaled others to get out of her way.  The director of the facility cautioned her to drive only as fast as an 80-year-old could walk. At 95, Aunt Janet figured that when she was 80, she was a pretty quick walker! Finally, after celebrating her 100th birthday with a grand party including former state officials and complete with Blue Bunny ice cream appropriately softened, she was quite worried that her money wouldn’t last until she died. She had maxed out the levels of care available and had hired extra help as well. Several of her friends had moved to less expensive places. My siblings and I assured her that she had enough money to last until she was at least 102.  We could re-evaluate then. She accused us of practicing voodoo economics.  She knew how budgets worked!  Finally, during her last hospitalization in 2017, at age 101, she asked what would happen if the docs did not do surgery to correct the problems she was having.  Their answer, “You will die, not painfully, more like just getting weaker until you don’t wake up.”   “OK”, she replied. Unfortunately, that was on a Friday and I could not get hospice care arranged in her apartment. She was discharged from the hospital to a nursing home attached to her assisted living facility, down the hallway from her apartment. It was crowded. The only room they had available was a double with a lovely lady who had made it her home and craft shop.  Her TV was constantly tuned to shows that were not Aunt Janet’s favorites.  To add to the bedlam, remodeling construction began at 7am across the hall, finishing around 6pm.  In the mornings she would open her eyes and say, “What am I doing here? I’m supposed to be dead.” In the evenings we world recite the 23rd Psalm, “…even though I walk through the valley of the shadow of death…”  On Wednesday, after former co-workers visited her and attempted conversation over the TV, hammers pounding, and saws buzzing, I met with the nursing director and social worker. Aunt Janet was finally moved to a private, quiet room.  The nurses there knew the hospice medical protocol.  Friends and relatives could be with her and hear as she announced on Friday morning, “I’m in the valley”. I was her medical power of attorney, but she was clearly still making decisions. She died later that day.

            As I sat by Aunt Janet’s bedside, I thought about my daughter’s assignment to me.  What was I doing to make sure she would have fresh vegetables, good coffee, and internet access? I wondered how many others in that nursing home would have to go through their last hours with strangers in the din of hammers and saws, and TVs blaring. Surely hospitals and nursing homes can provide a quiet space for the “actively dying”. Until that time, there are simple pleasures of good food, coffee, and company.  Internet availability makes it possible for life-long learning and opportunities for beloved friends and relatives across the world to visit and say their goodbyes. Perhaps by asking the questions I can help pave the way for her generation. As I look for a place to spend my last days, I’ll ask to join residents for several meals, sample the vegetables and coffee, ask about internet access and the progression of levels of care, including hospice care. These things are possible.

THE END