“Some people confuse acceptance with apathy, but there's all the difference in the world. Apathy fails to distinguish between what can and what cannot be helped; acceptance makes that distinction. Apathy paralyzes the will-to-action; acceptance frees it by relieving it of impossible burdens.” – Arthur Gordon
Patricia was 68 when her daughter Terri noticed that she began to forget things. Little things at first, like paying the utility bills or forgetting to add an important ingredient to a favorite recipe. As the years went by and the symptoms increased, it was feared that Alzheimer’s disease was at the heart of the matter.
Unfortunately Alzheimer’s is not a disease that can be diagnosed with 100% accuracy until after death has occurred. However, it can be diagnosed with up to 90% accuracy by a process of elimination. Medical history, physical examinations, and established tests are all performed to eliminate diseases that produce the same symptoms that impair memory or other mental functions. These include depression, medication side effects, certain thyroid conditions, excess use of alcohol, and nutritional imbalances.
Terri did what most kids would hope they could do when given an opportunity. She helped make things easier for her mother. She spent summers away from her own family home to help her mom care for her dad so that they could continue to live on their own with the dignity that they deserved.
In 2003, after Patricia’s husband had passed away, Terri, her husband, and her two children welcomed Patricia into their home knowing full well that her Alzheimer’s had progressed into the fifth stage. According to the Alzheimer’s Association, there are seven stages of this fatal disease ranging from unimpaired function to very severe cognitive decline.
“It’s more about accepting the disease and focusing on providing a higher quality of life for my mom rather than fighting against it,” said Terri. “We weren’t afraid of the challenge despite the warnings that we received from various people around us to not get involved. She’s still my mom.”
For nearly two years, life was about acceptance. Accepting that Patricia didn’t recognize Terri as her daughter. Accepting the significant behavioral changes that often disrupted activities. Accepting that no two Alzheimer’s patients are alike in the symptoms that they display.
Alzheimer’s is not a normal part of aging, gets worse over time, and is fatal. It is the sixth leading cause of death in the United States and is the only cause of death among the top 10 without a way to prevent, cure, or even slow its progression. Alzheimer’s disease is the most common form of dementia accounting for upwards of 70% of the cases. Dementia is often thought of as a disease, but it is really a generic term for any type of brain disorder that affect memory, judgment, personality, and other mental functions.
“It’s not that the memories are difficult to access for an Alzheimer’s patient,” said Jennifer Howard, interim executive director for the Michigan Great Lakes Chapter of the Alzheimer’s Association, “it’s that the brain cells that store the memories are dead and therefore are completely gone.”
“Nearly 70% of people with Alzheimer’s live at home,” said Ms. Howard. “Your loved one is still your loved one regardless of the disease.” Ms. Howard tells us that the Alzheimer’s Association is here to help. They offer a wealth of community programs and services designed to meet the needs of those with Alzheimer’s, family members, care partners, and the public.
“Life was also about creating some very special memories for my family while my mom was with us,” said Terri. “I wouldn’t have traded my time with her for anything.” Terri’s children, who were seven and nine at the time, remember the good times.
“At a particular stage, when she had lost a lot of her memories from her adult years,” reflects Terri, “life was very good. We had figured out triggers to let her live blissfully in her reality such as putting on a Frank Sinatra song or the smell of a freshly-baked apple pie.”
“That’s the mercy of Alzheimer’s disease,” said Ms. Howard. “With some people, they forget that they have the disease and do not realize that they have lost any of their memories. It’s okay if they are not living in your reality. It’s more important that they are happy, safe, and cared for.”
By the end of 2004, two days before Christmas, Patricia had been into the sixth stage for a while and was placed in a facility in Kentucky. Patricia is only a few miles away from her daughter Trish where she receives daily visits and 24/7 care from a staff of dedicated professionals. Today, Patricia is in the final stage of Alzheimer’s where the disease is attacking the brain stem that controls many of her autonomic functions such as breathing, walking, and swallowing.
Terri plans on participating in the Late Stage online program developed by the Alzheimer’s Association. She believes that this will help her understand what her mom may be going through during her final days. “She’s had a very good life, especially during her time with Alzheimer’s,” said Terri, “and I know that she understands that she is being taken care of and that she is loved by many, many people.”