“A road map to all your responsibilities.”

Login to Account

The Ridiculous Health Care Journey of Helen.

by | Jan 15, 2024

My mother and father quit smoking early in 1972 when mom found out she was pregnant with Maribeth. In the subsequent three years mom had picked it back up before her pregnancy with me.

Growing up I would beg and plead, I would try and bribe or trick her into quitting. The constant shroud of smoke in our red Subaru or our Dodge K car wagon with the dent in the bumper that matched the one in the deep freeze thanks to my older sisters attempts to “back out the car”.

One day however. I would see her last pack of cigarettes enter the trash can at the entrance to Sanford hospitals surgery center.

Helen loved to garden and sew. As they finally had some financial stability and time with her retirement, the gardens at the farmhouse expanded. Legendary gardens. She would spend countless hours every summer, dirt crusted into every crack and crevice on her arms and face. Her fairer skin and freckles would almost look tan they would be so sun worn.

Massive gardens. Probably near 1/4 acre of gardens. Hundreds of plants. Nearly 200 trees. She’d start with coffee or a coke at sunrise. Work until the heat got to her, or a customer would stop by to pay a bill. She would always have a friendly face. Be honest and patient, taking the time to visit with them about their payment woes, or her garden or the weather. In subsequent years I would always run into folks that would remember, admire and love her. People that rented for three months but remember her like a childhood neighbor lady.

You have never met someone who worked as hard as she did. In later years as I took over responsibilities I’d always be mom “smarter not harder”. I think she avoided efficiency out of a fear of idle hands. Sun up to sundown. Every weed picked, every flake of dirt swept or dusted.

I’d always help with the bigger projects. Like emptying junk from storage units or fall clean up. One summer I had been particularly busy with my own things and avoided making a dump run with yard waste for too long. I showed up at the house and the trailer had so much yard waste in it the fenders were digging into the tires. So I emptied half the trailer and took two dump runs.

I remover dressers and motorcycles, records and toys, dust and dirt. Cobwebs and trophies. All abandoned by renters. One particular unit had a strange mix of items. Medical books from USD, gay porn magazines, athletic trophies and a camouflage condom that read “They’ll never see you coming!”.

Mom had chosen to be aggressive with her breast cancer treatment. A double mastectomy and aggressive chemo and radiation were in order. Later she would confess to regretting the decision to not have reconstructive surgery. I have seen the scars the the misshapen torso of an overweight woman with no upper body tissue to speak of.

During chemo I would take extended breaks from my job designing kitchens at Home Depot to bring her strawberry milkshakes from McDonald’s. If Camilla and I had the day off together we would go and sit with her.

Between a full time job at Home Depot and the photography business Holly and I had started my plate was pretty full. However my mom ran my parents storage facility and so I took over all of the physical responsibilities and spent time rebuilding all of the operations for efficiency.

This really was a pivotal part of my life. Where I started really connecting with my parents. Where I started working every waking moment. Where I missed Camilla’s everything, except on storage unit days where I’d take breaks and help she and my dad fill bird feeders or some other errand to help she and my mom plant 100 trees. I’d work an 8-5 shift at Home Depot and go either to the storage units or to the studio to edit until 12. Saturdays we photographed weddings.

After the chemo and radiation my parents decided to take care of their other health needs. My dad replaced a hip. My mom both knees. One at a time. This was their time to get everything right so they could move into the final chapter all ship shape.

During recovery from the second surgery my mom got a really bad cold. Her lungs always struggled with respiratory things because of years of smoking. But this thing, it just hung on. Antibiotics and steroids, and still it progressed. We would soon start down an entirely new path.

My mom had been misdiagnosed by a local infectious disease doctor. After numerous missteps and two years of basically suffering with the symptoms of pneumonia, my mother and I ended up at Mayo Clinic with the world’s primary authority on MAC disease.

When we first met with the local specialist he had insisted she had MAC disease. A disease that results from an extreme sensitivity to the MAC bacteria. We had suggested she might have what the call Hot Tub Lung, as they had put a hot tub into their home when she had her knees replaced a year earlier. The specialist assured there was no such thing as “Hot Tub Lung”. A pulmonary specialist, he all but mocked us for suggesting it. That smug self righteousness that you can only get after 14 years of education.

Two years later, and 30 minutes into our first meeting with Dr. Timothy Aksamit at Mayo Clinic, he said to my mother and I “I am going to stop you for a second, I want you to know you do not have MAC disease, you have Hot Tub Lung”. Explaining that the chemicals used to manage bacteria in a hot tub, if not managed perfectly can allow MAC bacteria to not only to survive, but to explode. If the hot tub is in a confined space, maybe say, next to your bedroom, the volume of bacteria can overwhelm your system and cause what is essentially Farmer’s Lung.

During the visit we noticed a distinct difference in the care received. Dr. Aksemit had all the time we needed him to give. He was thorough and understanding. He commanded that we empty and remove the hot tub from the house. He also wanted us to see a pharmacist while there so that we could get a handle on the dozens of medications she was on.

The pharmacist we spent time with was quite possibly the smartest doctor I’ve ever met. He was an African immigrant and was extremely kind. He took the time to explain some of his concerns. He recognized that the previous pulmonologist had switched my mothers antibiotics about three months earlier, she’d been on antibiotics for nearly two years at this point with no change in her condition, she had been taking two medications for the last few months that are never to be taken together due to the high likelihood of death from the combination.

Additionally he raised concerns about her being on Prilosec for the previous five years. Chemotherapy or radiation for advanced breast cancer had done a lot of damage and acid reflux was a constant battle. Along with this he asked about ankle or foot issues, which she definitely had. There was some link between the two. He reduced her meds by five or six during that visit. Something no pharmacist had taken the time to look at in all of these years.

We had a six month check up scheduled. We visited some of the great artwork in the halls of the clinic, grabbed some food and adjourned to the motel.

Six months later we returned my partner Holly in tow. On the way to Mayo my mom complained about one of her knees hurting. She had them both replaced a few years earlier. Religiously doing rehab and recovering quickly. We had a 3-4 hour break between appointments. Holly and I have a couple of friends that own a little photo studio so we went for lunch and a visit. With my mom set up at Mayo to grab some food and relax for a bit. We were gone for maybe 60 minutes when I received a call that we needed to help her. So we left a little early and headed back. Her knee had become extremely inflamed and we had to wheel her to her appointment. We received good news and bad news both though. She was in the clear. The levels of MAC bacteria had been reduced and she no longer needed the antibiotics. She would however never regain normal lung function. Her lungs would probably operate at max 60-70% for the rest of her life.

We wheeled her to the car. And hit the road. As we drove the pain got worse and worse. At one point Holly and I had to carry her into a Burger King to use a restroom. A road trip landmark in southern Minnesota I’d sooner forget. It burnt down a few years ago, so I guess that helps? The day after arriving home we were in the ER , that afternoon they had both knees splayed open, knee replacements both removed. For days they left them open to wash and clear an infection. The doctors were confounded as it had been several years since both knees had been replaced. But Helen was a champ. With a double knee replacement she spent two weeks in a rehab facility at a now closed nursing home. They didn’t have enough beds in the rehab wing, so she was in the nursing home side.

One day I walked into the facility and into her room, where she broke down into tears. They had not bothered to bath her in five days. She was ashamed and broken. Having tried to give herself a sink bath. She cried. I was infuriated. The situation was remedied within the hour. But that experience never left her and shaped my father’s end of life experience as well. My opinions of these care facilities will never be the same.

A week later she was liberated. Sliding her foot on a cookie sheet night and day to rehab as quickly as possible. Unlike my dad and I, my mom and sister can’t ever sit still. Her knees were pretty much back to normal within two months.

Unfortunately this wasn’t the end of the tough times. My father would soon have his own terminal diagnosis, surgery, attempt at recovery, in home hospice care and death.

After his passing my mom grew and explored and really became herself. The freeing of the responsibility of caring for my father allowed her to become the most social of butterflies. Every day she had two or three things in her schedule.

In particular thing that stands out was the teacher she was. And how that never left her. When we were young we were the first kids we knew to get sex ed. My mom wanted us to understand the human body. She was patient and living and so very nurturing.

This lasted into her late years as well. She had one friend, who also had recently lost a husband. The friend really hadn’t driven much in her life, she usually rode with, and her husband drove. She knew how to drive a car, but she really didn’t know how to get around. She would often, call my mom if she needed a ride somewhere. She knew my mom did not have a lot of responsibilities and would have time to help her get places. At some point my mom started showing up getting out of the car and climbing in the passenger side, and then calling her friend to tell her she was in the driveway. She would make the friend find her way to the place they were going. Who does that? Who has that much foresight to see another person‘s need for that knowledge?

A year or so later my mom’s right leg was bowing outward. Like a cartoon cowboy that had been in the saddle too long. One day she went to visit her specialist. Afterwards she called and asked to come over. In our living room she looked at me, she just started crying.

“Why me, what did I do to deserve this?” She cried and cried.

Only the second time that any of this had gotten the best of her. When she had had the second infection the bone around the knee replacement parts had deteriorated and the hobble and warped leg were a consequence of the pieces coming apart. A fifth god damn knee replacement. When I tell people of my mother’s medical woes I rarely go into detail. Most people don’t believe someone would need five knee replacements. It’s an easy highlight. But really doesn’t do the legacy of pain and struggle she went through any sort of justice. This was the final straw. Not the loss of my father. Not cancer. Not an insane bacterial infection.

So here we were. Mom in this big old farmhouse alone. She was still helping in the in home office of their business. But at this point I was pretty much running it. Soon after she decided that my sister and I should own it. Her gardens were starting to become to much, we hired a friend Linnie from my work to help her. That lasted a summer and then we hired another friend Alix to do ground keeping and help Helen with her flowers.

A year later she made the decision to move into something smaller. Holly and I helped her find the perfect little place near our home. Alix helped her move plants and distribute others to many locations throughout the city. Later to be amplified by our friend Tove spreading Helen’s purple flowers all over the city.

I remember so many moments vaguely. We would sit in the office and chat. Sometimes we would fight because I was too direct, or she too frustrating. But a hug. That was a moment when my worries could go away and my mom would just pull them out of me. She was my boss and I was hers. A confidant. A terribly frustrating and wonderful coworker. A teacher and mentor. A true friend.

There were challenges as we went forward. Curbs hit while driving on restless leg meds. Maxed out dosages of Parkinson’s medication that still didn’t let her rest. But was know to cause her to fall asleep mid sentence or mid meal. Once with Camilla she fell asleep face forward into a bowl of soup. She caused several accidents and hit a bank of mailboxes in a parking lot. We were at the point of taking the car away. So she was hitching rides with friends more often.

Her lymphedema had gotten bad. After her double mastectomy and removal of all of the lymph nodes on her left side 8 years earlier she retained an insane amount of fluid. Typically I would visit her first thing in the morning to apply full length compression stockings and socks. There is an amount of near birth intimacy you don’t typically get with your own mother after the first seconds of your life. But medical care like this will get you there. I would go again at night to remove the stockings so she could shower and go to bed in her recliner. Her ankles would be two inches skinnier than her calves because the ankle high socks would actually reduce the swelling to normal size and the stockings would just keep it from growing more.

Our ritual.

One day she confessed that she had had a respiratory episode the previous day. She had lost her breath, couldn’t catch it. Leaned into her kitchen island and became unconscious. Losing control of her bodily functions. Almost dying. This was not the last time it would happen. She was always on oxygen. Had been since the MAC disease first hit. Just another part of the daily existence.

As I left the studio early one afternoon I drove south bound on the Minnesota Avenue. I probably stopped for a soda and some sort of ill advised snack. Nutty Bar or mini donuts. As I crossed under 229 I thought about swinging by my mother’s place to check on her. She lived just two blocks behind us. We had a pretty regular routine of me checking on her twice a day. I knew she’d been out with her quilt group that morning so instead I turned right on 57th to head to the storage units for a days of work there.

As I approached Sundowner I received a call from a business owner near me inn 8th and railroad. It turns out our mothers were in quilt group together. Something was wrong and I should go straight to the house.

As I arrived the ambulance doors were closing and my mom was headed to the ER. A petite elderly woman stood crying in the driveway. I put my arm around her and said it was ok. It turns out this former nurse understood exactly what was going on, as did I.

The story unfolded. They had gone for coffee or breakfast. Every two weeks the group would meet up, eat, and then go to one of their houses to see what they had been working on. Given my mom’s recent driving issues her friend offered to pick her up.

After some fellowship they convened to a friend’s house, whose quilt room was in her basement. My mother’s friend offered to skip the visit and take her home. But my mother, never one to miss any sort of quilt talk, insisted on attending.

After an enjoyable time my mom struggled to ascend the staircase. Once in the car, my mother’s friend, a retired nurse, suggested going to the ER as my mom could not catch her breath. Having been through this before my mom refused. There was a wheel chair in the garage and she would have her friend bring the chair to the car and get her inside, she’d be fine.

Parked on the sloped driveway her friend went to retrieve the chair. My mom opened the door to be ready, but then collapsed, falling between the door of the car and the car. At 200 pounds plus my mom would have been difficult to move for this older woman who was maybe five foot 115 pounds.

My mother was not breathing. The woman called 911. Several neighbors were watching at this point. But none of them were willing to help, none were reacting. No one attempted to move her or do CPR. Just stood and watched her dying.

12 minutes.

My mom had a DNR. But the ambulance did not know that.

I held this crying woman. Assuring her it was okay. Understanding what 12 minutes without oxygen meant. She as well. Wishing she had been younger or stronger or insistent on going to the hospital. But my mom was stubborn. This was no one’s fault. She didn’t like to ever show pain or vulnerability. Especially not to random people. We stood on the edge of the driveway, ER visits were old hat by this point. I knew I wouldn’t see her for at least an hour, and honestly I knew mom wouldn’t ever see me again. So I comforted this stranger. This friend of Helen’s. I’d occasionally run into her later in life. We always had a moment, but I always could sense the regret of not being able to help. But I understood it completely. This was a kind and caring woman. And she over my mom.

On the drive over I phoned Maribeth in California. Explaining that I was positive she would not pull through. She understood and made immediate arrangements to fly out. At the hospital it was as I expected. They had reduced her temperature and would hold it low for 48 hours in hopes of saving some part of her brain function. But I knew the reality. 12 minutes was too long. 2-3 minutes maybe. But I was not going to hold out hope. Somehow Holly and Camilla materialized next to me. Lots of tears. And then Maribeth was there. Might have been the same day. We all had time to discuss the reality. I was the power of attorney. I was the one who had to make the call. And so I did. And we stayed with her until she took that last breath.

I write all of this to express my live and admiration for her strength and resilience. Putting a chunk of it down helps me to see it. Understand it. Grieve her a bit. Still something I am working on. I’m contemplating a project. But I’m not sure where or how it lives. A book, a manuscript. Not sure. These are the tough things. Very real things. And we all have them.