This holiday season has been difficult for Pam Gavin — Facebook memories keep popping up, reminding Gavin of how her mother was this time last year.
Gavin’s mom, Brenda Alexander, has Alzheimer’s disease.
“She was still walking and talking and having conversations — things we can’t do now,” Gavin said. “It’s a long, very slow goodbye, and I think it definitely makes it harder through the holidays as you reminisce how they were before.”
Brenda has lived in a Greene County nursing home for a little over a year now. She is on hospice care, can’t speak much and is confined to a wheelchair.
Still, when the News-Leader visited earlier this month, Brenda was surrounded by loved ones. She was smiling, laughing and at one point, singing ‘You Are My Sunshine’ with her husband, John Alexander.
“She is loved, and you can tell she is at peace,” Alexander said, patting Brenda’s hair. “And that is all we can ask for at this stage.”
A year or so ago, things weren’t so peaceful for Brenda and her family.
Gavin lives in Kansas City, but returned to the Ozarks for about nine months in 2018 and 2019 as her mom’s condition rapidly declined.
Gavin’s brother, Mark Applegate, lives in Bolivar.
John, Brenda’s husband of 21 years and stepdad to Gavin and Applegate, lives in Republic near the nursing home.
Brenda’s three caregivers spoke with the News-Leader about the challenges of in-person and long-distance caregiving for someone who has Alzheimer’s.
When Gavin returned to the Ozarks in 2018, she, her brother and step-father managed to keep Brenda in the home and out of a nursing facility for nine months.
“It was a real tag-team effort. Usually, Mark or I would go to their home every evening,” Gavin said. “She was not in a good place.”
While she was in the home, they had in-home service aides come “babysit” so John could go grocery shopping, do some gardening or just have a break.
“I took care of her. I bathed her. I cut her hair. I fed her,” John said. “It just got to be so much on me and my step-kids. They encouraged me it was time to move her into a facility.”
“She was doing not acceptable things like putting stickers on the walls, putting things in boxes,” John continued. “(She was) disorganizing things that were organized, confused on what was right.”
“It was dangerous, too. She was putting things in food,” Applegate said. “(She was) putting things in power outlets.”
Once, she dropped a handful of marbles into her drink, John said.
Applegate remembers all the media surrounding kids eating Tide Pods a few years back.
“She’d probably put one in her mouth now because it looks pretty,” he said. “It looks like candy.”
When she first moved into the nursing home, Brenda’s family say she really struggled with the transition.
She was not in a wheelchair at that time and considered a flight risk. She spent some time in a “lockdown” portion of the nursing home. She also had to spend some time in a behavioral health hospital while her doctors got her medicines figured out, Applegate said.
“It wasn’t the fault of the nursing home. They weren’t doing anything wrong,” Applegate said. “It was just the transition and the state she was in the disease.”
She has “sundowners” and spent much of her nights pacing back and forth. She was losing coordination and falling frequently.
Gavin has worked in the medical field for more than 20 years and is her mom’s medical power of attorney. The nursing home must call her anytime there is an issue, like falling, even if it’s 3 a.m.
For a time, there were so many of those 3 a.m. calls — each of which were so scary because Gavin imagined the worst — Gavin felt like she had a bit of post-traumatic stress disorder every time the phone rang.
The phone calls have since subsided because Brenda is in a wheelchair and does not fall as much.
“She went into a nursing home in October of last year. And by May of 2019, she was on hospice. She has had a rapid decline,” Gavin said.
An adjustment for her husband
John and Brenda Alexander met on a blind date in 1998. John had a child from a previous marriage; Brenda had three. They dated for a year before tying the knot.
The two lovebirds enjoyed fishing, gardening and making music together. Brenda is a talented pianist. They both love to sing gospel music.
John, 72, said moving his beloved wife into a nursing home was a big adjustment for him.
“When you have a loved one with this situation, you just talk to God and you just work it out,” he said. “I’m doing fine. I’ve learned to adjust. I live alone, just me and my cat.”
Because he lives so close to the nursing home, John has visited Brenda three times a day every single day she’s been there.
“When we get married and stand before a minister and say for better or worse, for richer or poorer, through sickness and health, ’til death do us part,” he said, “well, she is sick. But she hasn’t departed yet. It’s my responsibility to be here for her. That is what God put on my heart.”
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The staff and physicians know he’s going to be there, and the family wonders if that has anything to do with the wonderful care she is receiving.
But that’s not the only reason why it’s important for Alzheimer’s patients to have regular visitors, he said.
John firmly believes having family around her is helping Brenda feel loved and keeps her spirits up.
“She knows me. She doesn’t know my name, but she knows my face. She knows I’m her husband,” he said. “She knows I’m a man that comes and loves her three times a day. And I have to live with that. I have to learn to love her and not be sad.”
“This is their world now. Out there is over,” he said, pointing out the window. “I have to readjust to that, to realize I will never take her home.”
Advice for families
Brenda was first diagnosed with a mild form of dementia 10 years ago.
According to her son, Brenda took steps to fight that diagnosis. She worked crossword puzzles, did brain-games on the computer and walked a lot. She seemed to get better and the family all but forgot about that diagnosis.
Then about two years ago at a family gathering, her daughter asked Brenda to call out her first, middle and last name, the way Brenda did when her daughter was in trouble as a child.
“She couldn’t do it,” Applegate recalled. “That’s how we kind of figured it out.”
“I’ll be honest. It caught us all by surprise,” he said.
Because of that, Applegate encourages everyone to know the early warning signs, such as loss of memory, confusion and poor judgment.
“If you see any of those things, talk to your doctor early enough,” Applegate said. “There are some medicines you can take that will extend the early part of Alzheimer’s.”
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Early detection also allows families to plan ahead and “get their ducks in a row,” he said. The Alzheimer’s Association offers advice on legal planning, financial planning, building a care team and end-of-life planning at alz.org/help-support/i-have-alz/plan-for-your-future.
Gavin, Brenda’s power of attorney, said it’s important for whoever is in charge of medical care and legal matters to keep good records.
“I have one large file for Mom,” Gavin said. “It has basically all her health history, her insurance information, all my hospice contacts (including) the social worker, nurse, bath aid and administration. I keep really everything for her where I can get to it easily.”
Gavin also urges families is to create a care support team.
“I especially rely on Mark a lot. I think Mark and John, we all bring different strengths to our family care team,” she said. “John goes up there three times a day to make sure she eats. He feeds her. That takes that worry off Mark and I while we work. Mark and I tag team on everything else. We are really blessed to have each other.”
If you cannot lean on relatives, find a support group, she said.
The Alzheimer’s Association can connect you with in-person and online support groups, as well as the 24/7 Helpline at 800-272-3900. Visit alz.org/help-support/i-have-alz/programs-support.
“Build that support around yourself,” Gavin said. “Otherwise it can be pretty depleting.”
‘An advocate at heart’
Applegate recalled how his mom and John used to go to nursing homes and sing gospel music. She would also play the piano.
It was amazing to watch the residents light up when they would sing, Applegate said.
“(The residents) don’t remember their own name, but they can sing. They remember the lyrics,” he said.
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Back in the 1980s, Applegate recalled how his mother advocated for local animal control to stop shooting stray animals.
“She got it stopped. Now they euthanize humanely,” Applegate said. “If you knew my mother 20 years ago, she is an advocate at heart.”
With those memories in mind, Applegate started a blog chronicling his family’s experience with Alzheimer’s.
“She would, I’m certain, be thrilled to be bringing awareness to help someone else,” he said.
Find Applegate’s blog at digitalcornbread.com.
Gavin, too, hopes to find a way to use her and her family’s experience to help others.
“Our long-term goal for Mark and I both is to be advocates in some way for Alzheimer”s patients after we lose Mom,” Gavin said. “We know we have limited time with her. But we see so many people that don’t have visitors, especially back in the Alzheimer’s units.”
“I think they really miss the companionship even though they aren’t able to communicate,” Gavin said. “They don’t have that family member in there going to care plan meetings and helping make decisions.”
Gavin pointed out that there are programs for foster kids like CASA, where they are matched with someone who serves as an advocate for them while they are in foster care. She sees a need for Alzheimer’s patients, too, “to have an average citizen who just cares about them.”
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Learn more about Alzheimer’s disease at alz.org.
Watch for the signs
According to the Alzheimer’s Association, here are 10 early signs and symptoms of Alzheimer’s:
- Memory loss that disrupts daily life. One of the most common signs of Alzheimer’s disease, especially in the early stage, is forgetting recently learned information. Others include forgetting important dates or events, asking the same questions over and over, and increasingly needing to rely on memory aids (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own.
- Challenges in planning or solving problems. Some people living with dementia may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.
- Difficulty completing familiar tasks. People with Alzheimer’s often find it hard to complete daily tasks. Sometimes they may have trouble driving to a familiar location, organizing a grocery list or remembering the rules of a favorite game.
- Confusion with time or place. People living with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.
- Trouble understanding visual images and spatial relationships. For some people, having vision problems is a sign of Alzheimer’s. This may lead to difficulty with balance or trouble reading. They may also have problems judging distance and determining color or contrast, causing issues with driving.
- New problems with words in speaking or writing. People living with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have trouble naming a familiar object or use the wrong name (e.g., calling a “watch” a “hand-clock”).
- Misplacing things and losing the ability to retrace steps. A person living with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. He or she may accuse others of stealing, especially as the disease progresses.
- Decreased or poor judgment. Individuals may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money or pay less attention to grooming or keeping themselves clean.
- Withdrawal from work or social activities. A person living with Alzheimer’s disease may experience changes in the ability to hold or follow a conversation. As a result, he or she may withdraw from hobbies, social activities or other engagements. They may have trouble keeping up with a favorite team or activity.
- Changes in mood and personality. Individuals living with Alzheimer’s may experience mood and personality changes. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, with friends or when out of their comfort zone.
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