When Mom is Your Mission

Remember the old Mission Impossible TV show? "Your mission, if you choose to accept it..." When your mom or dad can no longer live alone safely, they need someone with a personal connection to have their back. Depending on the personality of the individual, this bittersweet time can be rewarding, trying, or (most likely) both. But their well-being must become a mission to you. The best you have to offer will be required of you, I guarantee it. Believe it or not, it will bring out the best in you. Really. I know it changed me for the better in some ways. My husband (my biggest fan, fortunately for me) tells me he wants me to be his parents' and other family members advocate if it is ever needed. Probably because I became relentless and unwavering in Mom's defense against human error. Mom was my mission.

During the last three years of her life, my mother's health drastically declined. It wasn't that great to begin with, but a heart attack, or rather medical intervention related to it, sent her on a downward plunge from which she could not recover. There were signs that the available diagnostic procedures were dangerous for her, but technology won out. And Mom lost.

At 74 years old, she lived on her own in a seniors' apartment complex. She began to panic while riding and driving in the car, making her dangerous to everyone on the road. We convinced her to get rid of her car and stop driving for her own safety. Her natural inclination was to hole up in her apartment and be a hermit of sorts, so losing her car encouraged that tendency. But living in the inner city was an advantage. Everything she needed was within walking distance (not that she would walk if she could avoid it). She worked at the food pantry and went to the church next door. Mom always made friends easily and had many in the building. They got together daily to gossip, play games, and help each other out.

My sister, brother, and niece made frequent trips with her to shop, go to the doctor, and to eat out. I occasionally helped her out, but we never had much of a relationship throughout my adulthood. We ended up arguing every time we got together. Mom liked to pick fights with me as far back as I can remember. It took me almost forty years to learn not to fight back. I figured it was best for both of us if I made myself scarce. It worked for decades. But my poor sister and brother carried the cumbersome load for years.

At about 75, Mom moved to a seniors' complex close to my sister. Mom was overweight, loathed exercise of any sort, had both knees replaced, and her cholesterol was high. She had gout, osteoarthritis arthritis, thyroid problems, asthma, GERT, weak kidneys,high blood pressure,vascular disease, and probable mental illness. She'd already had carotid arteries scraped out after two strokes. In her words, she was a mess. Two years later, Mom had a heart attack.

Gout and hypothyroidism are indications that the kidneys are weak. Heart catherization can damage already compromised kidneys (a bad reaction to the dye used), but the test was performed anyway. We signed off on the test, trusting the doctors and their superior knowledge. Hindsight tells my siblings and I that we should have asked more questions, but that did not help our mother. Her kidneys were permanently damaged. She underwent three months of dialysis and miraculously, her kidneys started working again. We laughingly called her Kitty since she seemed to have nine lives. My sister helped her put together a living will and an advance directive years before, but it was time to revise them. Mom was not much on details. She insisted that she wanted a DNR, no CPR, no nothing if it came to that. Dialysis was too painful. She never wanted it again. All three of us ( sister, brother and I) were on the living will, though we all disagreed with it. My sister was primary and Mom made her promise to be the one who made sure her wishes were honored. We both figured it was her life, not ours, so we should respect her desires regardless of our own views.

A fall then put her in the hospital. She got steadily worse from that point. She became uncooperative with nearly everyone. Mom was stubborn, belligerent, selfish, and very, very self-centered. Not because she was getting old; as we age, we become more of who we always were. Her worldview was all about her. Her memory rarely matched anyone else's, but it always made her look good. We called her Cleopatra - queen of denial. Later, I requested a psych eval to confirm my suspicions. It may sound strange, but when I looked up signs and symptoms of dementia, I found that most of them were things she had done all her life, so it was hard to know for sure. The shrink said that Mom was most likely mentally ill her whole life.

To make matters worse, we had to do vigil in her room to keep a hospitalist (fancy name for a doctor whose job is housekeeping - clearing beds) away from her since he had already discharged her too soon, requiring readmittance a few days later. Then she refused to do therapy. The rehab unit kicked her out! My sister was now burnt out from running a business and looking after Mom. So we moved Mom to a nursing home within walking distance of my home and I took over.

That was the beginning of the end for her. I saw negligence and outright abuse, got angry, and figured that even I could do a better job than they did. After a hospital stay due to bad care that almost killed her, Mom moved in with me. She was now dependent upon dialysis for the rest of her life. Staph infections in the catheters and dialysis graft finally did her in.

I learned so much in the next nine months! I come from a tech and research background, so details are my specialty. I dove in to learning and understanding everything possible about all her medications, procedures, treatments, doctors, hospitals, home health care, medicare and medicaid. I learned to juggle a renal diet to make eating pleasurable while keeping her numbers top dead center. I learned how to read medical charts and reports. I quizzed doctors, physical/occupational therapists, and nurses. Already practicing a more organic lifestyle, I introduced some more natural alternatives for diet and treatments. Mom even got her first chiropractic treatment at 79. It was almost like being in college again!

The truth of today's health care is that many of us need an informed advocate to help us navigate the health care system. Common sense is more rare at hospitals than ever. I tend to live by Occam's Razor: the simplest explanation is usually the correct one. Medical practitioners, not so much. Working with technology for over twenty years taught me, among other things, that technology is not always the best solution.

Oversight, sloppiness, plain old neglect, pedantic thinking, and laziness ran rampant in the health care institutions that took care of my mother. I learned that the worst thing to do was to put Mom in a geriatric unit in the hospital--they did her more harm than good. She needed to get up and move around several times a day (not her first choice), but they let her stay in bed all the time, even using adult diapers rather than helping her to the bathroom. The excuse was, 'she's old, let her take it easy.' The truth was, they were either too busy or lazy. They stuffed laxatives down her; not because she needed them, but because that's what they did with old people. The answer to most of my questions was "that's just what we normally do".

The doctors were ready to rush her into ICU and pump her full of more drugs because they couldn't get a pulse in her left arm and it was cold and blue. NO ONE IN THE JOINT COULD SEE THAT THE ACE BANDAGE WAS TOO TIGHT!!!!! One doctor insisted over and over that she needed a heart catherization, just in case, because of her congestive heart failure (CHF). It did not occur to him that CHF is a symptom of renal failure! In fact, everyone looked at her chart and never went past CHF. That was all they thought they needed to know. Part of my mission was to point that out and get them to dig deeper. I'm not bragging, but if I had trusted all their judgements and let them do all they wanted to, the way they wanted to do it, Mom would have died a lot sooner.

For three months we had to deal with a wound care specialist who ordered treatment that did not work and got angry with me for treating her wounds with honey instead of neoporin. He would not listen to me when I tried to tell him that his way took two or three months to heal while my way took two or three weeks. He had never heard of it, so it couldn't possibly be good. And his way allowed a staph infection to creep in and take over.

To add insult to injury, when it was time for hospice care, the intake person was about as sensitive to Mom's needs as an armadillo. She got two inches from her face and talked and laughed as if she were speaking to a baby! This done to a woman in extreme pain who couldn't breathe, choked on spit, and had one foot in the grave! Mom was in no position to defend herself from this assault. She needed someone there to look out for her. Fortunately, she had my sister and I.

A lot of good things happened along the way, however. Mom had excellent therapists and nurses who came to the house to see her. We even found a good Christian primary care physician with a wonderful jolly manner who specialized in the elderly, and made housecalls. In fact, 90% of this man's practice was housecalls! He was a blessing without disguise. Mom loved him, told him the truth, and followed his orders. His way of checking her mental function was to consistently mispronounce her last name. So long as she called him on it, he knew she was doing fine. When she just let it go, he looked into it further. He even treated me free of charge for an injury from putting her compression stockings on for her. And was insulted when I told him I couldn't pay him.

The home health care professionals were excellent. They were kind, firm when necessary, listened to what both of us had to say, and provided all the medical apparatus needed (bandages, tape, rubber gloves, saline solution, therabands, pads for the bed, etc.). When we needed financial help, they put me in touch with an agency that paid me to take of Mom. They paved the way with the specialists when they would not listen to me. They figured out just the right way to deal with Mom so that she would cooperate, even after dementia set in. And they helped me deal with insurance so that everything got paid by them and not us.

I remembered what my sister told me about the last time and called 911 to get Mom off the floor when she took a fall. I could not lift Mom up; she weighed twice as much as I do. The EMTs were glad to help; in fact, they told me they wished more people would do that since elderly bones are so fragile.

As far as personal care goes, Mom required more and more as time went on. There wer so many things I swore I'd never do. If anyone had told me a year before that I would be doing half what I did for Mom, I would have laughed at them. Change diapers? Bathe her? Teach her manners? Dress her? Counsel her? Clean her dentures? Get her to pray? Dole out medication? Get up in the middle of the night when she called? Yeah right. But I did. And I am grateful for that time, all of it. The good, the bad, and the ugly.

You may not go through all that I did with your parent. You may have a loving, close relationship with them. Their health needs are probably different, maybe better, maybe worse. Or you may see exactly your situation in mine. There are many possible solutions to every problem. And most of us are totally unprepared to deal with most of them. I thought I knew what I was getting into, but I did not have a clue at the start. Sound familiar? Comment or ask a question. If I can, I will try to help, or at least point you in the right direction.