Editor’s Note: Second in a series of stories by people caring for loved ones with Alzheimer’s.
by Kathy Neblett, Special to the Roundup
My father passed from complications from Alzheimer’s disease and my mother, who currently lives in a nursing facility in Mesa, has Alzheimer’s.
Researchers have observed that having a parent or sibling with Alzheimer’s increases one’s risk of developing the disease, although non-genetic factors also play a role.
I personally feel my family history shows signs of both genetic and non-genetic Alzheimer’s. My parents did not exercise regularly and did not watch what they ate (they were from the South). Not knowing about Alzheimer’s, they were not concerned with their lifestyle behaviors that may have had an impact on their likelihood for Alzheimer’s.
My father always got my sister and I up for school and fixed our breakfast, as my mom went to work very early. An auto mechanic, he loved to take us on vacation to the Colorado mountains. Even though he only received an eighth-grade education, he was very street smart. While serving during World War II in the motor pool, he single-handedly pieced together a Jeep from scraps, which was eventually named “Ol’ Scrappy.”
At the age of 38, he had hardening of the arteries. At age 68 he had heart surgery, without follow up physical therapy, therefore he quit walking and was bound to a wheelchair. He had several strokes over the years and was diagnosed with Alzheimer’s after he fell and broke his hip.
He continued to drive after he stopped walking. I became concerned with his erratic driving so I contacted his doctor and the Department of Motor Vehicles to get the documents to stop him from driving. When the doctor told him he had to stop driving, I took his keys and he became furious. After he passed, I found many copies of his car keys hidden in different locations in his room.
He eventually became violent toward my mother; he easily became agitated and frustrated. My mother would try to calm him by getting close to him, but he would try to hit her or would throw things at her. At one point, he broke her nose.
At this point, my sister and I agreed, for Mom’s safety, to place Dad in a nursing facility. Once he was in the nursing facility, his eating habits changed from eating anything to very picky. He became more frustrated and agitated. We eventually discovered that the nursing facility was not managed well, felons worked in the facility, and it was not clean (all the residents and family members got “scabies” — twice). This was reported to the health department and they issued a citation to the facility.
After Dad passed, my sister and I thought this would remove stress for my mom, but as time went on we realized that her behaviors were not only due to stress about my father. My mom would get turned around while driving — she ran into the back of a car stopped at a traffic light, without slowing down. She showed signs of irrational behavior: a house roofer told her she needed a new roof, but the current roof was relatively new. Mom would let people in her house that she did not know; one day a worker called me on my mom’s phone! Paranoia began to set in and she started hiding things. One day she was insistent that a tree in the back yard was falling down and was to land on the house. She thought there were more people in a room and would talk to them. She shredded napkins; tried to blow dry used Kleenex and placed paper products in her underwear and say someone else did it.
My mom lived with my husband and me for almost a year. Having a loved one with dementia disrupts your life. I imagined, before Mom moved in, that she would adjust to our life. But it was us who had to adjust to hers. I was stressed trying to keep up with my mom’s care along with trying to care for my marriage. My husband and I value our time, like going to church and other activities with our friends. However, while Mom was with us it became more difficult to take her with us. We realized we had to take turns, so one of us could be with Mom at all times.
Alzheimer’s Risk Factors
Risk doubles every five years after age 65. Half of Americans who live to 85 will develop symptoms, for still-unknown reasons.
A close family history increases the risk, especially in cases of early onset or multiple family members.
Scientists have identified several genes that sharply increase the risk in some cases, especially involving early onset.
The turning point for me to place Mom in a professional facility was my stress level. The facility, which was well managed, had been recommended by one of the members of the Alzheimer’s Support Group.
To help with the financial care for Mom, I purchased CareMore Health Plan. For a low fee, they provide health plans for low-income seniors, people with chronic illnesses and those living in skilled nursing facilities. The plan covers a nurse practitioner visiting weekly, monthly doctor visits, podiatrist visit every two months to cut nails, blood work and X-rays at the nursing facility. This has been a wonderful relief because I know Mom is getting good care.
Looking back, I would not have placed Mom in a facility any sooner ... I was not emotionally OK with it. It was about the timing for me. I also realize it does not matter where Mom is at — she will be the same, whether being cared for at my home or in a professional facility.
Because this disease changes your loved one, I had to say many times, “This is not my mom, it is the disease.”
I feel life choices plays into this disease, my mom had an eighth-grade education and I wonder if she had gone further in her education if the disease would have had the same impact.
To help me find peace through this, I do lots of exercise including Zumba, water aerobics, Pilates and strength and toning regularly, attend the Alzheimer’s Caregiver Support Group, read a lot, developed many wonderful friends with whom I can talk to about my feelings and worries, stay focused on my marriage and work part time as a travel agent.
Reaching out to the community is a wonderful way to stay active, so I have been certified by the Alzheimer’s Association as a speaker on the 10 signs of Alzheimer’s. Speakers’ bureau volunteers help raise community awareness.
Sometimes, I do catch myself not remembering things, but the difference from my mom is that I eventually remember. I do write more notes to myself, backtrack more and go through spurts to stay healthy. My goal is to “think about being healthier.”
Knowledge is valuable and having a healthy mind and body is critical to stave off the lifestyle effects for Alzheimer’s. I have chosen, as a child of parents diagnosed with the disease, not to be genetically tested. The medical profession is in the early stages of understanding this disease, so if my genetic tests returned positive, there is not much hope for me or my 45- to 47-year-old children, because there is no curative treatment. The test results would create anxiety and concern for me.
I pray that the medical profession will soon understand what causes Alzheimer’s and how to deal with it, whether lifestyle or genetic.
About genetic testing
Genetic testing for Alzheimer’s remains controversial. Testing should only be undertaken after discussing the benefits and risks with a physician or genetic counselor.
The gene APOE-e4 increases the risk of developing Alzheimer’s, but it is neither necessary (people without APOE-e4 develop the disease) nor sufficient (not all people with APOE-e4 develop Alzheimer’s). However, the tests can cause intense anxiety, despite the uncertainties and affect eligibility for disability, long-term care and life insurance. The Genetic Information Nondiscrimination Act of 2008 does not apply to these forms of insurance.
The Alzheimer’s Association position on genetic testing includes five principles intended to prevent genetic discrimination.
- Having the APOE-e4 gene does not mean a person has or will develop Alzheimer’s.
- The presence of a gene associated with Alzheimer’s disease should not be used to deny access to housing, employment, health care, insurance or any other goods and services.
- The presence of a gene associated with Alzheimer’s disease does not automatically qualify an individual for disability-related benefits.
- Anonymous testing should be available.
- Tests should include pre- and post-test counseling.
The Alzheimer’s Caregivers Support Group invites caregivers, families, service providers and members of the community to attend any or all of the following:
• First and third Wednesdays of the month from 1:30 p.m. to 3 p.m. at the Senior Center.
• Second and fourth Thursdays of the month from 6 p.m. to 7 p.m. at the Senior Center.
For more details, call Shirley, (602) 697-4870 or Mary, (928) 474-3560. The Payson Senior Center is located at 514 W. Main St.