But my house isn't big enough...

Moving mother and all of her equipment into our home was initially a logistical challenge.

Our house was small and full, with a tiny "great" room, a kitchen, three small bedrooms, two bathrooms, two teenage sons, a young daughter, and Louis and I.

The larger master bedroom with access to the master bath was clearly the most practical for mother's hospital bed and equipment. The boys shared a bedroom with bunk beds, so Louis and I slept in Emily's room, and Emily slept on the living room couch.

Hardly ideal, but it worked. As a citrus farmer, Louis woke up early every morning, tip-toed through the living room (so he didn't wake up Emily) to shower in the master bathroom and dress in the closet (so he didn't wake up mother).

Eventually we were able to enclose the porch off the kitchen with a futon for Emily. Still not perfect, but a little more breathing room for everyone and more privacy for Emily.

Even before we had a little more space, I don't remember my family ever complaining. Given the opportunity to make those same sacrifices, I have no doubts that they would willingly do so again without hesitation.

Their attitude reminds me of the quote by Gregory Laughery in the header above:

"Others come first - through washing feet, laying down lives, loving as Jesus has loved us."

Confidence...

My training and practice as a professional nurse most certainly gave me the confidence to choose to care for my mother's complex needs at home, but it wasn't my training and experience that qualified me.

I learned from my work in hemodialysis that people without any medical experience can be taught the skills needed to provide in-home hemodialysis treatments for others. The requirements included a desire to learn, the responsibility to practically apply each skill as they had been taught, and the maturity to ask for help when they needed it. I've come to believe that is true of many other non-intensive care treatments, as well.

Shortly after mother was moved into our home, despite my training, I realized that I lacked many of the skills needed to care for her. Because home health nurses and a physical therapist were ordered initially, I was able to learn from them how to properly care for mother's bed sores and how to do her range-of-motion exercises. Over time I learned how to provide a variety of treatments I had never used in my nursing practice to meet mother's increasing needs.

Though my confidence may have waned a bit initially, I remembered my hemodialysis experience and knew that I could learn what ever skill was needed to provide the loving and personal home care that I so desired for my mother.

Fear of the unknown...

While waiting for an appointment to speak with our tax preparer a few weeks ago, I had the opportunity to talk with his wife, with whom I had only shared polite greetings before.

Since my last appointment with our accountant a year ago, he had moved his office into a lovely new home. I told his wife how beautiful I thought their new home and office was, and she preceded to tell me the reasons behind the move. The most important reason, she told me, was that they had moved her mother with Alzheimer's in with them. Building a new home, they could design a bedroom and bathroom for her mother that would accommodate the needs of an older person, and life was much simpler for all of them by connecting the office with the house.

As we talked about what it means to care for elderly parents in our home, she told me that others had tried to discourage her.

You have no idea what you are getting yourself into.

Your mother is going to reach a point where you are not going to be able to care for her.

It's going to get too hard.

The truth is, none of us know what awaits us around the corner, but God does...

in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
~ Psalm 139:16

I also know that when life gets hard, God's wisdom and grace will be abundant for the moment.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.
~ 2 Corinthians 12:9

*Photo - Highway 24 between Chattanooga and Nashville

From washing feet to washing hair...

Inflatable Hair Washing Basin
Unfortunately, the nursing home staff did not prepare me very well to bring mother into our home. They were not particularly supportive of our decision and provided only minimal help in arranging for our needs. Even though I was a trained professional nurse, I learned many things about caring for the disabled by trial and error, and one of those was how to wash mother's hair.

For a brief period after she moved in with us, home health nurses helped me with mother's bed bath 3 days a week, and once a week they used a dry shampoo on mother's hair. But in the hot and humid climate in which we live, dry shampooing was not adequate for giving mother the clean scalp and shiny hair I knew she desired.

Once again, I searched the internet for a solution and discovered this inflatable basin. It wasn't perfect. I still managed to get the bed wet in the process, but it enabled me to get mother's hair and scalp thoroughly wet for a good shampoo every week - and because I would shortly be getting mother out of bed and changing her sheets, the wetness was only temporary.

Though you cannot see it in the above picture, the basin had a 40-inch drain tube with a plug that enabled me to thoroughly rinse the shampoo out of her hair by draining the water into a bucket on the floor by the bed.

Every month or so, I arranged for a beautician to come to our home and give mother a good haircut on a morning after I had shampooed her hair. In fact, because I was unable to leave mother very often, we would often turn the kitchen into a beauty parlor and the beautician would cut my hair and Emily's hair, too.

Pretty in Pink...

During the time mother entered rehab and we moved her into our Pollywog Creek home, I became a bit annoyed with the nursing home staff when I noticed that mother's shirts were always on backwards. I never said anything, but I thought...how difficult can it be to put some one's shirt on right?

The first morning mother was in our home and I dressed her after her bath I discovered exactly how difficult it can be to dress someone in mother's helpless condition. It's one thing to dress a tiny newborn - though that can be difficult enough - but dressing mother was like dressing a 140-pound newborn.

After what seemed like a hour, with one of mother's arms in one sleeve and the rest of her shirt crumpled up behind her back, I gave up in laughter. Mother laughed, too, as I proceeded to re-dress her with her shirt on backwards.

Determined to find a solution, I discovered several online resources with clothing for patients with a variety of challenges such as mother's. It was obvious that she needed shirts and dresses with closures in the back and I had fun choosing a variety of dresses in colors she had never worn before - like pink.

A natural redhead, many of her long time friends had called mother "Red" as long as I could remember, and redheads do not wear pink, but mother had not been a redhead for many years and I decided to go for it.

I thought she looked pretty in pink - don't you?

Chapter 1::Part II

(Part I is here)

I can’t remember exactly what time it was when the phone rang that night, but I was the only one in the house still awake. “Mrs. Hunter,” the nurse said, “your father has been taken by ambulance to the emergency room….we could not wake him and his blood pressure is very low.”

Over the next 2 days, I rarely left the hospital. My brother’s wife, my nephew and I took turns staying by daddy’s side while the doctors treated him for sepsis, an infection that had spread throughout his body – most likely from the cut he had received on his arm earlier in the week. We prayed, we sang, we adjusted his pillows, and wiped his feverish brow. We told him often how much we loved him - but he never woke up.

My nephew’s little girls were in the waiting room with the rest of the family when we came to tell them that Pops, as he was affectionately called, had gone to be with the Lord. “Did you see the angels?” Kari asked. I could see the smiles on the faces of strangers across the room. "Angels for my daddy at Christmas." I treasured the thought.

As a family we left to tell mother. Not sure daddy would make it through that first night, we had taken her to the hospital to see him, but it had been very difficult on her physically. She did not ask us to take her back, and we didn’t offer. When we told her that daddy was gone, we talked about his freedom from emphysema and Alzheimer’s – that he was no longer struggling to breathe or remember, and holding hands around her bed, we sang together…."When we all get to heaven, what a day of rejoicing it will be….”

Louis and the boys returned home that evening, but Emily and I stayed. behind. The first thing mother asked when we went to see her the next morning was, “Have you seen your dad today?” I was stunned! I knew she was having short-term memory loss, but was shocked to realize that she would forget that daddy had died.

“Remember, mom...remember yesterday, when we rejoiced that daddy isn’t suffering any more because he is now in heaven?” But she didn’t remember….and every day we had to have the same conversation over again. Eventually I stopped telling her. It didn’t seem fair to make her grieve anew every time. When she asked about dad, I simply told her that I had not seen him.

We did take mother to daddy’s funeral. My sister in law and I helped the nurses get her dressed and I witnessed just how much she was continuing to decline. She could not remember how to brush her teeth or that she needed to spit out the rinse water. It amplified my grief over daddy’s death to realize that I was also losing my mother.

Emily and I continued to spend most of the next week in my parents’ apartment as I tended to legal affairs. We discussed mother’s condition with her physicians and rehab center/nursing home staff and the decisions regarding mother’s long-term care that needed to be made with my brother and nephew. Though they did not tell us at the time, the nursing home staff had already determined that mother was not going to improve and needed to move out of rehab and into the nursing home.

Emily and I went home for a few days, and the following weekend we all returned to see how mother was doing. My sister in law had been visiting mother often and helping her with her meals when she could, but just being away from my mother for a few days, it was obvious that she was not getting the food and water she needed. If mother didn’t ask for a drink of water, the nurses didn’t offer it, and her food tray had apparently being removed more than once without her eating a bite. Mother had become so dehydrated that her skin had started to slough, and in just a week, she had developed bed sores on both heels. She was not getting the care she needed.

“Your dad and I want to move your grandmother in with us,” I told the children that evening as we gathered for prayer back home. They had wanted Pops and Grandmother to move in with us months before, but this was different. We would need to make major adjustments in our home to be able to care for mother now. We were not surprised when one of them bravely asked, “Could she die here?”

Three days before Christmas, a medical transport van delivered my mother to our home. Mother’s room needed to have easy access to a bathroom, and be large enough to accommodate a hospital bed and other necessary equipment, so Louis and I moved out of the master bedroom to sleep in Emily’s room and Emily slept on the living room couch. It was almost a year before we could enclose the front porch so Emily could move off the couch and into a bed.

The adjustments we made in our living and sleeping arrangements were just the beginning, as our lifestyle was altered drastically by my mother’s 24/7 needs. It took two to three hours every morning to medicate, bathe, dress, and feed her breakfast. We used a Hoyer Lift to move her from her bed into a Geri Chair, a kind of lounge chair on wheels, and then back into bed for an afternoon nap, a diaper change, or just to take the pressure off of her back and bottom for a while. For several weeks, she also required physical therapy, catheter care and treatment for her bedsores.

As a family and with help from others, we took meticulous care of my mother. Her bed sores healed, we kept her and her clothes and bedding soft and clean, we offered her food and liquids at frequent and regular intervals, and we loved on her constantly until she, too, joined my father in heaven a year and half later.

Washing the Feet of the Saints is not just our story, but the stories of many families who have chosen to bring loved ones into their homes at a time when a nursing home seemed to be the only option. They are love stories offering hope and encouragement seasoned with grace for those who continue to wash feet today and for those who will be called to do so tomorrow.

Chapter 1::Part I

The days between Thanksgiving and Christmas that year were some of the worst days of my life. Daddy had moved into a nursing home the middle of September, and over the next six weeks, my mother’s health suddenly and rapidly declined. Two weeks after daddy entered the nursing home, mother began to lose her balance and needed to use a cane to walk. Just one week later she needed a walker. Twice she was hospitalized after falling, and after the second fall, her doctors advised that she enter a rehab facility for a season. So that she and daddy could be close, mother was moved into the rehab wing of his nursing home.

Thanksgiving Day, a week later, mother was discovered unresponsive in her wheelchair and was hospitalized for the third time. As she began to respond in the hospital, it was apparent that her cognitive abilities as well as her physical strength were greatly impaired. Though she recognized family and friends, she had virtually no short-term memory. Where she had been unsteady on her feet before, she was now unable to walk at all or even stand. CAT scans ruled out a stroke and though she had suffered with rheumatoid arthritis for years and early symptoms of Parkinson’s disease, her team of physicians was baffled at the cause of her rapidly deteriorating condition.

It was doubtful that mother would ever be able to return to her home again, but after she was discharged from the hospital back to the rehab center therapy was continued with the hope that she would improve. As much as I longed to bring her to our home, I knew she would never choose to leave my father, and at the time we did not have room for both of them. I hated that either one of them was in a nursing home, but I was comforted that at least for the moment they would be together.

The worst day came early in December. For over a month, my daughter Emily and I had been making the three-hour drive from our home to the nursing home two to three times a week, occasionally staying overnight. On this particular day we had gathered a few Christmas decorations from my parents’ home to take with us to the nursing home, wanting to make their rooms more festive with familiar things.

We went to mother’s room first. Even if she didn’t feel well, mother always greeted us with a smile. That day was no exception. When we entered her room she was sitting in a wheelchair next to her bed, her lunch was on a table in front of her. The food tray had not been touched and when I asked, she wasn’t sure how long it had been sitting there. As far as I knew, she was still able to feed herself. She said she wanted to eat, so I prepared her plate, put a napkin in her lap, seasoned her food and told her we would return after checking on daddy. She smiled and thanked me as we headed out the door.

In the nursing home wing across the building, we found daddy asleep in his wheelchair parked outside the nurse’s station in the middle of a group of other wheelchair patients. He was bony thin and frail, slumped over in his chair. He had recently been given medications and had apparently bitten into a vitamin, and the crushed remains mixed with saliva ran down the creases of his chin. He was a mess. His clothes were rumpled, and he desperately needed a haircut and shave. His arms were covered with the bruises common in the elderly, and there was a bandage around his right forearm. I questioned a nurse about the bandage and was told that he had cut his arm falling out of bed the day before. “Didn’t someone call you about it?” she nurse asked. Obviously no one had.

We gently woke daddy up and wheeled him back to his room so I could clean his face and show him the Christmas decorations we had brought from home. It depressed me greatly to be in his room - a room he shared with strangers. Daddy had worked hard - long past retirement age - to provide comfortably for my mother, my brother and me. I was deeply grieved that his earthly rewards had been reduced to a wheelchair, a hospital bed, a bedside table, and a small closet for his baggy clothes.

I reached into the bag of decorations and placed a miniature Christmas tree on the table in front of daddy’s wheelchair. The tree had been crafted by gluing dozens of tiny decorated boxes to a styrofoam cone. It had been the centerpiece mother used most often at Christmas on the kitchen table where daddy spent most of his days after retirement – mastering numerous crossword puzzles before Alzheimer’s disease took over and his crossword puzzles were replaced with coloring books. I had hoped he would be delighted to see that shiny decorated tree in his room at the nursing home, but instead he grabbed it with both hands and began to crush it with amazing strength. Shocked, I managed to pry his fingers loose, but the tree was destroyed. “Daddy! Why did you do that?” I cried, but he groaned and stared over my shoulder not saying a word.

Something was very wrong. I asked the nurses to please put him in bed. “Maybe he just needs to rest,” I thought. “I love you, daddy,” I whispered as I kissed his forehead before leaving the room with Emily to check on mother.

My heart sank as we entered mother’s room. We found her in quite a mess. She was still in her wheelchair and food was every where. She had spilled most of her lunch in her lap or on the floor, and tomato sauce was smeared all around her lips, apparently from whatever lasagna she had managed to get on the fork and close to her mouth.

“LORD, what is happening to my mother!”

Not wanting to alarm Emily, who was only 8 at the time, I chuckled and tried to pretend nothing was wrong. I washed mother’s face, changed her nightgown, and cleaned up some of the mess off the floor. Though mother continued to smile, I noticed a hint of embarrassment. Like a little girl caught skipping through mud puddles, she knew she had made a mess.

On most days, someone from the rehab center would wheel mother to daddy’s room, or the other way around, so they could be together, but it was obvious that today was not going to be one of those days.

“How was your father?” mother asked. Amazingly, she had remembered that I had left her for a while to see him.

“I don’t think he is feeling well today,” I answered, hoping she didn’t detect the lump in my throat.

We stayed for a while in mother’s room. Emily held her grandmother’s hand and told her what she was learning in school and what she wanted for Christmas. We decorated the bulletin board on the wall by mother’s bed and placed other Christmas decorations around her room. I read the Christmas cards that had come in the mail to her, and tacked them to the newly decorated bulletin board.

Mother continued to smile.

We stayed as long as we could. We had not planned on staying overnight and needed to head back home that afternoon. With a heavy heart I kissed mother goodbye.

Before leaving, we stopped to check on daddy. The nurses had put him in bed, and he appeared to be sleeping comfortably. I grabbed the bag with the crushed Christmas tree, and we left the room without disturbing him.

I am usually rather stoic when it comes to tears in public. I tend to save my crying for when I am alone. Most of the time, I can clinch my teeth or bite my lip and do what ever it takes to hold back the tears, but this day was not like most, and as we walked out of my father’s room, I was unable to hold back the flood of tears.

To be continued...(Part II here)