After helping my dad through Parkinson’s and my husband through Alzheimer’s, I have learned that living with an illness myself is much easier than living with the chronic illness of a loved one. Diabetes has no cure, but it can be controlled, and I do. Parkinson’s and Alzheimer’s have no cure or lasting treatment and result in declines that are very difficult to watch when you can do nothing to stop the progress of the disease.
My Dad had Parkinson’s for many years, and as soon as the disease became worse, my mother suddenly died at age 80 of a massive heart attack. My dad could not stay by himself, and there was no treatment that could significantly improve his symptoms or his disease. None of Dad’s children lived in his city. I was in Colorado, and my brother and sister were 1-2 hours away, depending on Texas traffic. At first, we believed Dad could face his life without our mother if he were in a facility close to his friends, his city, and his church. That worked for a few months, but it was too much for my brother, who wanted to check on Dad every few days while at the same time managing his business. We then moved Dad to an assisted living facility close to my brother, but Dad fell and needed the care that only a nursing home could provide. We found a nursing home close to my brother, where my brother could check on our dad every day. Throughout my dad’s agonizing decline, I tried to help in two ways. I found all the facilities for my dad and made sure there was money to pay for them. Next, I tried to call my dad every other day. Despite all my family’s efforts, it was heartbreaking to watch Dad’s decline and to know the end stages would be brutal.
My husband’s Alzheimer’s was much, much worse than my dad’s Parkinson’s, from my perspective. My husband’s decline was mental we well as physical, and I had to face it every day. After the initial diagnosis, my husband and I moved from downtown Denver to a small college town, which was perfect for the first four years of my husband’s disease. Although he gradually lost executive function, he could handle life in the small town well. He could safely drive, do errands, and keep himself relatively busy. We had built a very grandchild-friendly house with a basement full of toys and books, a kitchen for teaching them how to cook, and a porch for painting and building erupting volcanoes. However, after these four years, I was not prepared for my husband’s very sudden and dramatic decline. Then, he was truly lost, and I could no longer take care of him by myself. I first tried using caretakers, but in a small college town, that proved to be impossible. I knew it was time for a memory care facility, but finding one that worked for my husband was a frustrating and difficult experience. First, we tried a new facility with his own personal caregivers. Despite what I thought was a safe environment where my husband could be supervised by both the facility and the independent caregivers I hired, he fell and had to be briefly hospitalized and then sent to a rehab center. I then tried an old facility with better nurses but a dismal and depressing environment. I could not leave him there. We then moved to Houston, where, after visiting several memory care facilities, I found one where I could live in the same building but on a different floor.
I don’t believe my frustration in finding caregivers and a memory care facility was unique. It is very difficult to find caregivers as well as memory care facilities that have the experience and patience to deal with people who cannot remember even simple instructions and who are easily confused and disoriented. It is also harder than anything I have ever had to face to watch a loved one lose the ability to do what he loves the most: practicing law and reading books. What made it worse was that I knew the prognosis would be unpredictable and inevitably dire.
Diabetes is a disease in which the pancreas does not supply sufficient insulin to remove the glucose from the blood. Over time, uncontrolled diabetes, that is, when insulin is not supplied in the correct amounts at the right time, the patient can develop serious complications. To control diabetes, the patient needs fast-acting insulin and a method to detect glucose in the blood.
I was first diagnosed with diabetes when I was 7 ½ months into my third pregnancy in 1976. At that time, diabetes was in the Stone Age, and both the mother and the child could die. The prognosis was particularly grim in the 9th month because the baby would be too large to survive. I, of course, panicked when I realized what I faced, but I was determined that my baby would be safe. I literally weighed all my food and never cheated on my diet. I came home every day for lunch to cook my own food to keep within the confines of my diet and checked my urine frequently. At that time, there were no blood tests for glucose. This was a serious problem because a urine sample could detect glucose but only very late, whereas a blood test would enable a patient to detect glucose as soon as it became a problem. However, early detection would not have helped in those days because the only insulin then available was long-acting, which could be taken only once a day. There was no short-acting insulin, at least to my doctor’s knowledge, and there was no internet for me to use to learn about the disease and its appropriate long-term treatment.
My determination and vigilance paid off because my baby was born healthy one month early. My sweet daughter had obviously decided to leave my womb before it became too dangerous for her to stay. My amazing doctor stayed with me for 24 hours to make sure both my baby and me would be alive and well.
My doctor and I hoped that after the stress of pregnancy, my diabetes would resolve, but it did not. I was still diabetic and insulin-dependent. I admit that after the serious threat was over, I was not very vigilant, and my diabetes was not well controlled. I didn’t eat enormous numbers of carbs and did regularly exercise and take insulin, but that was not enough. My doctor always admonished me to do a better job of controlling my diabetes, but I didn’t, preferring to ignore it as much as I could. My glucose readings were always unacceptably high when I went for regular checkups.
After several years of irresponsible behavior, I developed neuropathy, a nerve complication of diabetes caused by poor control. It was the most painful condition I had ever experienced, including childbirth. I visited all the neurologists in Denver, but none could help me. There were no pills I could take without serious complications. Desperate, I went to the Mayo Clinic in Minnesota. That was an experience! The clinic takes nothing for granted and, over a three-day period, tests every part of your body. I even had to return for a visit with a neurologist. However, the trip was worth it. I was given an old and tried medication, amitriptyline, which worked without side effects. Most importantly, I learned to face the fact that I had an incurable disease that would require vigilance and determination for the rest of my life. The disease was incurable but treatable, but I had to wake up and smell the necessary vigilance.
There was one major problem. I had no idea what to do, and monitoring by the Mayo Clinic would require frequent travel at a time when I had an increasingly busy practice. After calling everyone I knew, I discovered a newly formed treatment center called the Barbara Davis Center, which is now part of the Anschutz hospital system in Aurora, Colorado, and even better, I found Dr. Satish Garg. The Center at that time treated mostly children and only a few adults, but thankfully, Dr. Garg agreed to help me. After one very intensive day of training at the Center, I learned there was a short-acting insulin that would enable me to treat high blood sugar almost at the outset and there were blood tests that required only a finger stick that would provide an instant glucose reading. That combination, plus my determination, worked. Three or four times a day, I tested my blood sugar and could then adjust my insulin dose accordingly. I also went to see Dr. Garg regularly for him to review my efforts and check my success.
It has been over 25 years since I followed Dr. Garg’s advice, and thanks to his efforts and those of his colleagues around the world, the treatment of diabetes has advanced significantly. Now, there are insulins that act in 2 hours, so much better than the 24 hours required by long-acting insulin. Now, I wear a Libre 3, formerly a Dexcom, that automatically provides readings of the amount of glucose in my blood every 5 minutes and alerts me with a loud, screening, not-to-be-avoided noise when my glucose is too high or too low. I do not wear an insulin pump because I like to be in control. However, I do use an insulin pen. No longer do I have to use a needle to withdraw insulin from a vial. I have a pen that uses a tiny needle, which allows me to adjust the pen to the appropriate dose.
There is still no cure for diabetes, but thanks to Dr. Garg and scientific research, I have lived with diabetes for 48 years and have had few complications. Dr. Garg tells me I will live to be 100, but I don’t wish for that. I will simply take living healthy through compulsive vigilance.
