Editor’s note: This is the sixth of a monthly series of articles that will be written by Methow Valley resident Don Reddington, which will explore the issues of living with Alzheimer’s disease. The articles will be written in collaboration with Raleigh Bowden, M.D., Katie and Josephine Bristol and Methow Valley News reporter Laurelle Walsh, with research assistance from Wild Iris Medical Education.
After Jerry Bristol and, several years later, I received the diagnosis of Alzheimer’s disease (AD), we both met with Dr. Raleigh Bowden, a volunteer physician who helps people with health and end-of-life issues. We asked what we should expect in each stage of AD, so that we and our families could plan for the future.
Learning about the stages of AD has been an important tool for me, and has helped me and Ginger plan for the future. I have found the information about Alzheimer’s on the Wild Iris Medical Education website — www.nursingceu.com — to be very useful.
Dr. Raleigh said that it was important to realize that classifications are arbitrary, and that there is a great deal of overlap between stages. The most commonly used classification divides the disease process into three stages: In the first stage memory is impaired; in the second stage there is evidence of significant decline in cognition; and in the third stage deterioration and physical deficits become more apparent. Jerry and I thought, “What a future to expect!”
Alzheimer’s disease actually begins creating changes in the brain many years before a person shows any signs of the disease. This is called “preclinical Alzheimer’s.”
Most people, like me, suspect something is wrong when they begin noticing problems with memory and concentration, or trouble coming up with the right word. This is the early stage of the disease, called “mild Alzheimer’s,” when many people go to the doctor for testing, and receive their diagnosis. I received my diagnosis about a year and a half ago.
I am in the early stage, maybe moving into the first part of the second stage. I have loss of memory. It is more difficult to remember the location of places such as cities, counties and other geographic areas, and the names of family friends and acquaintances. Reading and writing have become difficult. It takes me longer to work and finish projects.
I am comfortable driving to places that I am familiar with, but I hand over the keys on longer trips or if I feel poorly. Sometimes I ask Ginger how I am doing, and she gives me feedback. I know that someday I will have to give up driving. Ginger and I will adapt as we go along.
I can also be affected by mood changes; however, I want to stay happy. In fact, I learned that depression is common among people with AD. So I am taking an antidepressant to help. I get sad when I can’t remember someone I have known for a long time. More than once I have wept after a conversation because I just could not remember them.
Although some days are better than others, my goal is to enjoy life and remember that “Life is good.”
The symptoms of AD will grow more pronounced over time, although the rate of change varies from person to person. On average, a person with Alzheimer’s lives four to eight years after diagnosis; however, some may live as long as 20 years, depending on other health factors, according to the Alzheimer’s Association.
Moderate, or “mid-stage” Alzheimer’s may last for many years. Frustration is the hallmark of this stage, as we find it more difficult to express our thoughts and perform routine tasks. The person in the mid-stage may become moody or withdrawn, especially in socially or mentally challenging situations. They may have personality changes like suspiciousness or anger.
My friend Jerry is in the mid stage. He was diagnosed with AD five years ago. His mother had AD, so his family knew roughly what to expect from the disease. Nevertheless, his daughter Katie writes, “Although the stages of the disease are similar among patients, the effects on the individual are unique to that person.”
For example, Jerry began losing his ability to speak earlier than most people. While loss of speech is common in the later stage of AD, according to Dr. Raleigh the disease is highly variable in terms of which nerves get damaged, and when. I’m grateful that Jerry and I can still share in some conversation.
With the help of Dr. Ann Diamond and Dr. Raleigh, the Bristols were able to talk openly and honestly about what was happening to Jerry, what was going to happen and how they were going to prepare for the various stages. For example, they knew that Jerry would lose the ability to drive a car, that his reaction time would slow and his judgment would become impaired. They planned for this. They talked about it before it happened, and Katie and Josephine checked in with Jerry about whether he was comfortable driving and checked in with each other about whether they were comfortable riding with him. When the time came for Jerry to stop driving, they were ready and they had a plan.
As the disease progresses, the person with AD will require more care and assistance with activities of daily living. Jerry gets some help with his personal care, but he can still do many things himself. Later symptoms of AD include confusion about where you are or what day it is, reversals of sleep patterns, and a tendency to wander and get lost.
In severe, or “late-stage” Alzheimer’s, the person needs round-the-clock care and assistance with eating, bathing, dressing and toileting. They will lose their ability to communicate verbally. They will need help walking and safely transferring into a bed or chair. They will become vulnerable to infections like pneumonia and urinary tract infections.
Josephine and Katie wish to keep Jerry living at home as long as possible, and have discussed the need for an over-night caregiver someday. “We’ll know when we can no longer cope at home, physically or mentally, when it becomes too much for us,” Katie said.
I hope to continue living at home, with in-home care assistance for Ginger, through the mid stage. When I can no longer live at home, I will move to Jamie’s Place, an adult family home in Winthrop that provides nursing care in a residential environment.
When we began “Living with Alzheimer’s” in January, I was in the early stage of the disease and I was doing most of the writing for each chapter. I knew at that time that this work would become more difficult for me and, as it turns out, my original guess that I needed to get the chapters done by June was correct!
It is now July. At this point, I have some of the symptoms of the mid stage of AD, and reading and writing have become quite difficult. But with organizing and writing help from my project partners, Dr. Raleigh and Laurelle, we will complete the series. We have three more chapters planned.
Our thoughts are with you.
Don Reddington and Jerry Bristol, AD League