Submissions in the research category are open to research topics in any field: STEM, Social Sciences, Business, Humanities, etc. Submissions should use the documentation style appropriate to the discipline and should not exceed 20 pages. Kim Foster wrote the 1st place submission in the Research category for the 2023 President’s Writing Awards.
About Kim
Kim Foster is a second-degree-seeking student pursuing an English degree in the Writing, Rhetoric, and Technical Communication program. She originally studied music years ago but found her niche when she went back to school for editing courses. Since then, she has been a freelance editor working primarily with nonfiction. She loves her work and is very excited to be studying at Boise State. When Kim is not at her computer, she enjoys working in her garden and spending time with her husband as they solve the world’s problems over a strong cup of coffee.
Winning Manuscript – Caregivers and Coping with Dementia
“Mom, what have you been doing today?”
“Oh, I’ve been reading good books and some silly children’s stories. I went to church this morning, and now I’m trying to take a nap.”
I start putting away Alice’s laundry as my husband Chuck moves in closer to sit near his mother. She only recognizes us by our voices now, her sight having faded to full blindness. Yet her spirits are high, and her voice is kind.
Alice suffers from later stages of dementia. Though she has a full list of things she’s done that day and people she’s seen, she has hardly been out of her bed. She is fully convinced she is very active and tells us all sorts of stories about her day. This is a good day when there are hints of clarity and moments of true memory.
As people are living longer, more people are involved with caregiving for older family members. According to a 2022 report released by the Alzheimer’s Association, “The population of Americans age 65 and older is projected to grow from 58 million in 2021 to 88 million by 2050” (2022 Alzheimer’s 19). Families will be increasingly called upon to be actively involved in their care. It’s a responsibility we should be willing to take up if we are able. But what happens when the family member has dementia? The same report projects that within this age group, Alzheimer’s dementia may reach 12.7 million. Within Idaho, from 2020 to 2025, those age 65 and older who will have Alzheimer’s dementia will increase by 22.2% (2022 Alzheimer’s 22). With the dramatic rise in dementia, will the eldercare industry be able to keep up? Dementia throws a normal aging process into an unpredictable category because the disease itself is unpredictable in how it manifests. It’s a scary unknown and can drive fear into the hearts of family members.
The road through dementia can be long and arduous. There may be small hints of the disease, but most of us choose to ignore them. We want our parents to be the same strong, independent people they have always been. They have been our support, those we look to for help, for wisdom. When that starts to shift, the possibilities can shake up our world.
As I stood before a dear family member, I saw the confusion in her face. I had just arrived in Louisiana for a visit, and she wasn’t sure what to do. I immediately hugged her and told her I loved her and that I was so glad to see her. We had experienced a conflict a few years earlier that had never completely resolved. As I stepped back and looked at her, I realized I would never receive the apology I so deeply desired. Instead, I knew I had to completely forgive her and love her fully in that moment without any hope of the kind of resolution I craved. That is when I started the grieving process, when I fully accepted her condition and understood things would never be the same.
Caregivers and extended family often feel helpless when faced with dementia. It’s also a time of confusion and trying to cope emotionally with how a beloved person is changing into someone unrecognizable. The difficulty is accepting that they’re not quite the same person you’ve known. Yet understanding the process and accepting their condition will help reduce the level of stress and frustration while learning to cope with a very challenging situation.
What happens to the brain during dementia? Alzheimer’s changes not just how the brain functions but the entire brain itself. According to the Alzheimer’s Association, Alzheimer’s disease causes “the brain to shrink dramatically” because of nerve cell death and loss of tissue throughout the brain. This, in turn, affects nearly all the brain’s functions. The cells eventually die because “nutrients and other essential supplies can no longer move through the cells” (“Inside”).
In the early stage of Alzheimer’s, the first thing you’ll notice is short-term memory loss. The person also notices they don’t remember things well. They’ll forget names or familiar words or where they left something. They can still drive and function on their own. Their forgetfulness may be something they want to hide for fear of losing their independence (or having it taken away from them; “Early-Stage Caregiving”).
We noticed that Alice’s stories began to change, and we couldn’t always track what was right. The story line was similar, but the characters were different. Because she was so convincing, we figured it must be something we misunderstood. No one wanted to admit a trend was starting.
Alice would ask the same question or share the same story two to three times within a short visit. Responding with the same attentiveness took a lot of patience, and I admit this was difficult for us in the beginning. I learned to take a deep breath when the same story came up yet again. A certain emotion was integrally connected to each story. Some of the stories weren’t pleasant, and they were difficult to relive. We learned to anticipate which story brought up anger or frustration and diverted the story to a different one. It didn’t always work, but we continued with this approach. Every time we could avoid a negative emotion, we felt a small win.
The middle stage of Alzheimer’s is a difficult stage because the person starts reacting to their condition. They get confused, act in unexpected ways, and sometimes explode in anger or frustration. Nerve cells in the brain are damaged, so the person has a difficult time expressing their thoughts or doing routine things without help (“Middle-Stage Caregiving”). Alice’s mind had been slowly failing, and we witnessed the gradual decline of her mind firsthand. It was difficult to experience. We had to learn ways of dealing with things that were often frustrating: repeating ourselves, her unreasonableness, and often her combative nature.
Mom stood in the doorway, her face streaked with tears, her eyes puffy and red. “When’s dinner?” she asked cheerfully. Twenty minutes earlier, she had been screaming at us irrationally because she was angry. We had established protective boundaries in her life the year prior, and she was upset about it. The unexpected explosiveness was sometimes surprising and difficult to deal with. She began hurling cruel accusations that didn’t make sense and were very hurtful. We were completely shocked, and I had no idea how to respond, so I continued preparing a holiday meal as my husband spoke gently to her. When she wouldn’t calm down, he suggested she rest in her room while dinner was being prepared. Five minutes after she had laid down, she came back out having completely forgotten her outburst. She had returned to her normally pleasant self, while we were still reeling from the unexpected tirade.
This intermediate level requires a deeper level of patience, especially because you’re learning to adjust while navigating this confusing realm. One of the main things that helped us communicate effectively with Mom was to stop reasoning with her because dementia robs the ability to reason. She would hold on to a false memory that was impossible to dislodge. Trying to convince her of the accurate details only led to confrontation. Diversion was the best tactic.
We learned to go with the flow of her memories or stories, asking questions and maybe taking a point and veering down a different path if we felt she was working herself up into a rant. I started calling it the “squirrel approach.” If my husband didn’t recognize that the conversation needed to quickly take a different direction, I’d say under my breath, “squirrel,” and he’d immediately change the subject.
Once we accepted that we couldn’t reason with Mom, our conversations took a slight turn, and we felt a small weight lift. Just because we knew the correct answer or the logical way to see a situation, we didn’t need to force the truth on her. It saved quite a few tears and heartaches. And a few angry words.
The late stage of Alzheimer’s is the toughest stage. This is when it becomes difficult for the person to carry on a conversation, or even to respond to their environment. They can still communicate, but it isn’t always easy to understand, and it may not make sense. In the final stages, the person cannot control their movement. The level of care is high, and the person requires help with just about everything. They oftentimes don’t recognize family members (“Late-Stage Caregiving”).
Alice grabbed her son’s hand and said, “You’re such a nice brother.” She kissed his hand. “You always look after me.” Chuck didn’t say anything. He just patted her hand. To correct her would have brought confusion. It could have even made her feel unsafe, as she was feeling secure and loved in the moment. Sometimes we go along with the conversation and let Mom express herself.
So much dignity is stripped away during this later stage. They often have “accidents” and can’t make it to the bathroom. They may forget basic actions, like how to handle a fork, or even how to ask for help. If their eyesight has failed, they may think it’s morning when it’s almost time for supper. Their minds are muddled, and they can become agitated because they don’t like feeling confused. A gentle response can often bring calm.
There are many things caregivers can do in the later stages of Alzheimer’s that are incredibly beneficial to the person. Family can gift them with gentle touch, holding their hand, or stroking their hair. When we feel that Mom is feeling sad or lonely, we will sometimes hold her hand. I always give her a kiss on the cheek when I leave—something I never did when she was healthy. She wasn’t the “huggy” type. Now she smiles and chuckles and plants one on my cheek. It’s a sweetness that makes both of us happy.
One of the most effective ways to lift Alice’s spirits is playing familiar music that’s relaxing. When Mom came to live with us for a few months, she had a very negative attitude. She had been living in a retirement community where she didn’t fit in. For some reason, she didn’t adjust well to that location. She was angry about life in general, and she brought her anger into our home. We tried many things to help her heal and were desperate to find a way to reach her. When we started playing music, we started to see a shift in Mom’s attitude. We chose hymns because of their message and her association with them.
Music has a powerful effect upon a person’s emotions. According to a study on music and dementia published in the Degenerative Neurological and Neuromuscular Disease journal, the researchers found that patients responded more positively to familiar music. Music may also lower stress in dementia patients (48). We experienced this with Mom. She has never tired of listening to music, especially familiar hymns she has known since childhood.
We also played audiobooks for her that were engaging and filled with humor. When she listened to several books by one author, we didn’t have another book to recommend, so we started the first book again. We found that she could listen to them repeatedly because she had forgotten the stories. And her enjoyment was the same as the first time. We also gave her headphones to use because of her failing hearing. They helped her focus for longer periods. Of course, she had to learn to speak to Alexa.
“Alexis, play At Home in Mitford.”
Silence.
“Alexis! Play At Home in Mitford.”
I responded, “Alexa, play At Home in Mitford.”
“She’ll listen to you, but she won’t listen to me.”
I smiled. “Mom, she won’t answer you unless you say her name correctly.”
Mom looked concerned about Alexa’s attitude. “She’s pretty sensitive about that, isn’t she.”
When is it time to insist on higher levels of care? The decision could limit the person’s activities. It could move them to a different location, “robbing” them of their independence and familiar surroundings. Family members may oppose the conversation because they don’t want things to change. But ignoring the changes won’t keep them from happening. In fact, it could expose a loved one to greater risk.
Alice sat there looking angry. She did not want to give up her car keys. The police officer had cited her for unsafe driving after the accident. She had never seen the other car because she was focused on getting to the bank to dispute a charge that had appeared on her bank statement. Her valid reasons for continuing to drive were dwindling, and she knew it.
Alice recognized she wasn’t remembering well, yet she put up a good front. So much so that everyone believed her. She told stories with such authority that doctors were swayed. She created a version of reality that kept her in control, even though things were falling apart around her. Her finances were in jeopardy, as well as her safety in living alone.
Our family agreed that we needed to step in, but until we could reach a consensus on how or how much, we didn’t act. It went too long, and we have no idea how much money she spent on scams or on people who “needed” help. Her generous heart was betraying her. Now her fender-benders had led to an official accident.
There were different stages of help we considered, and because Alice could function well enough alone, convincing her to downsize and move into an assisted living community was the first step. Our family didn’t always agree with every step after that, but we focused on what was best for my mother-in-law. There were some tough, emotional discussions that caused slight rifts in the family. These had to be healed so our relationships could weather the times, and our family ties are stronger because of it.
We had to eventually go to court to obtain guardianship and conservatorship so Mom could live in financial safety. And our concerns weren’t only financial. She had a person in her life who offered to meet her and take her away—all in complete defiance of the family’s wishes. This led to a couple of legal orders that blocked contact with this person. These were tough decisions to make. When we felt flooded with emotions that were possibly skewing logic, we had to step back and reevaluate what was best for Mom.
If caregivers can understand what’s happening, they will have surer footing for coping with the changes. Then they’ll be able to find ways to express the changes with their loved one who is struggling with dementia. My cousin came up with a brilliant plan for transitioning her mother to a higher level of care.
Juanita’s failing memory had reached a point where she needed constant monitoring. To accommodate this, she needed to move to a different room within the facility where she lived. In fact, she needed to move to the second floor. How was Caitlyn going to talk to her mother about it? She didn’t want to upset her, and she knew she couldn’t mention the reasons. She had an idea.
“Mom, guess what? I have a big surprise for you!”
“What is it?”
“Let’s go to your room and see.”
They walked into the new room that had the same layout as her previous room. A crew had moved her things while they were out for the afternoon and arranged everything exactly as it had been in her previous room. Caitlyn walked her mom over to the window. “I got you a new window with a better view!”
“Oh, my goodness. That’s wonderful. I love it!”
According to the National Institute on Aging, those with Alzheimer’s disease may experience sundowning: “restlessness, agitation, irritability, or confusion that can begin or worsen as daylight begins to fade.” There are some ways to help prevent or lessen the anxiety. You can always distract them with something they like to do, or even a snack they love. Sometimes we bring a “treat” with us that we know will make her happy. Perhaps we’ll ask Alexa to play a song she likes.
The National Institute on Aging recommends clearing clutter out of the room or keeping the number of people visiting to a minimum. When family comes to visit Mom, everyone takes turns to visit so it doesn’t overwhelm her. We also try to schedule our visits with Alice in the afternoon between lunch and supper. She is most alert and ready for an engaging conversation during that time.
Conversation can be a big challenge, especially because Alice can’t always find the right word or becomes confused. It’s very important to make her feel comfortable and avoid phrases like, “Don’t you remember?” or “You haven’t forgotten me, have you?” These questions would only highlight her failing memory and make her feel anxious.
Those experiencing dementia will not be able to recall something that happened five minutes ago, but they might tell you an experience from their childhood in minute detail. As the disease progresses, they may not be able to retrieve as much. In fact, Mom thanks us for traveling so far to visit her (we used to live in Texas). We always surprise her when we tell her the happy news that we live only six miles away. Every visit is filled with things she loves: singing, hearing from family, recalling our favorite memories of her, or praying together. All these things bring her joy. Even though she won’t remember the details—or that we were even there—the joy will linger and affect her for a time. She associates joy with our visits.
A nurse once told me that making a memory book would be a helpful reminder to the person and trigger pleasant emotions. We found scrapbooks that Mom had made and often looked at them with her. She even had one filled with notes from students. She was an art teacher for many years. She also led children’s Sunday School in her church and had illustrated many of the Bible stories. These books were creating sweet moments, as the author Jolene Brackey recommends in her book, Creating Moments of Joy. According to Brackey, we should listen to the stories repeated to us, so we can retell them to the person when they can no longer recall them (9). I like that idea because we can choose the positive stories to retell and avoid the ones that bring negative emotions to the surface.
Caregiving is exhausting work and can drain a person’s energy both physically and emotionally. If you are a caregiver, as you are taking care of your loved one’s needs, you need to be sure you’re focusing on your needs. Eat nutritiously and get as much rest as you can. If you can take a break during the day, make yourself a cup of tea, call a friend, or read a chapter of a good book. It may take some creative strategies to find time for yourself, but it’s worth it.
A major step to caring for yourself may start with asking for help. Are there any family members who can give you a break, perhaps help with transportation or daily care? Check out assisted care facilities in your area to find adult day care services that will give you a break of several hours for one day a week, possibly even several days. This is truly a brilliant resource. Some centers even provide transportation. Where Alice lives, they don’t treat their residents and visitors as if they’re “babysitting.” Visitors can come for an afternoon or even a full day to take part in activities and visit with the residents. The activities are geared around fun events the residents love. They go to the park, and some residents are able to sit on the swings. Sometimes the staff will take them for rides in the golf cart, traveling all around the area while wearing fancy hats, and coming back for ice cream or lemonade.
During the pandemic, the activities director made a piñata in the shape of the COVID-19 virus, and the residents took turns hitting it with a cane. I think it was rather cathartic for them because at the time, visitors could only visit through a window and not in person. They let their frustrations out on the piñata and cheered when it broke. The facility posted a video online so family could join the experience.
One warm, summer day, the staff put together a “fishing” trip. They placed a kiddy pool in the gazebo and put in a couple of trout. The residents went fishing (catch and release, of course) and were thrilled when they caught a fish. I asked Mom later how she did. She was a bit disgusted that she didn’t catch anything, but she smiled when she told us about it.
There are home care services that will come to your home and provide help with bathing, dressing, and eating. They even help educate you with tips on how to help the person function better. Because Mom was recovering from eye surgery, she had trouble seeing what was on her plate. One helpful tip I received was to tell Mom where her food was by comparing it to a clock. “Mom, your carrots are at three o’clock, your chicken is at six o’clock, and your mashed potatoes are at nine o’clock. There’s a roll at noon.” We laughed together, and she was thankful for the description.
It’s so easy to feel isolated when you’re caring for someone else. Try to find a support group to connect with. There may be a group in your area that meets in person, or you may be able to meet online. Hearing other people’s stories reinforces that you’re not alone. Others have gone through the same thing, and they may have some amazing tips to share with you.
There are private, online support groups located on Facebook. There is a bit of comfort in joining closed groups so that comments are not seen by everyone. There are usually very specific rules about engaging to protect those participating, which helps create a safe environment to share. If you’re part of a faith community, there may be resources available with your church or another church within your area. The Alzheimer’s Association also offers local chapters who meet in person and are led by trained facilitators.
If looking for a facility for services, Elder Care Locator (eldercare.acl.gov) can help find local companies. Don’t feel embarrassed to ask a lot of questions when looking for a facility to connect with. You’re looking for the best fit for your loved one, either to visit for day care or to live there long term. If you can’t get satisfactory answers, keep looking. Now that I’ve been through the process, I’ve come up with my own list of questions to ask. You can always check online for other questions, but these can get you started.
- How do you determine what level of care a resident needs?
- Do you have a certified nurse or a nurse practitioner on-site?
- How much training does your staff go through?
- How many residents do you have?
- What is the ratio of staff to residents?
- What services do you provide for your residents?
- How involved can family members be if our loved one comes to live with you?
- What type of activities does your facility provide?
- How many levels of care do you provide?
- If my loved one needs to increase their level of care, will they need to change facilities, or will yours be able to accommodate the change in care?
In our situation, our circumstances changed drastically and suddenly, and we didn’t have time to fully prepare for the experience. During the pandemic, Mom’s retina detached in her left eye, and she needed emergency surgery to correct it. The assisted living facility wouldn’t allow her back in because of the risk of exposure to COVID. She needed 24/7 care because, in her words, “I’m blind in one eye and can’t see out of the other.”
We converted part of our living room into a bedroom. Mom couldn’t navigate the stairs to the upstairs bedrooms. A garment rack separated her bed from the sitting area, creating a private space for her. I made a pallet near her so I could help her when she needed it. And she needed it. All night, every night.
My husband and I later learned that anesthesia will often confuse a person for a few days. For someone with dementia, though, it can scramble their brain for a couple of weeks or even months. Alice was often confused about where she was. And because she was unable to see well, she often didn’t recognize me.
After two weeks, I was sleep-deprived and felt myself coming apart. As Mom’s sight began to slowly return, and she was able to move around solo, I moved back upstairs. After another two weeks, I realized I was existing but not resting. I caught myself putting the milk away in the pantry. I prepared a cup of tea but couldn’t find it when the water boiled. I hadn’t left the kitchen, but I had no idea what I had done with it. I finally found it in the cupboard with other cups. I lost my vocabulary. I just couldn’t think of the right words to say, so I often pointed at what I was trying to describe. My husband wasn’t immune either. He took a couple of Excedrin out of the bottle for a splitting headache. He came back with a pitcher of water and caught himself before he poured water in the medicine bottle instead of the glass sitting next to it.
We knew we had to give ourselves permission to rest, so we started finding ways to give each other breaks. My husband took Mom for a walk every day—sometimes twice—while I tidied up her area and cleaned her bathroom. I played her dominoes while my husband finished teaching an online class of sixth graders. We made it work and the small breaks helped. But they weren’t enough. We needed to rest our minds away from the house.
Coordinating with home health services was a great relief. We were able to schedule a staff person to come and sit with Mom and interact with her for an afternoon. We took several hours to get a cup of coffee, grab some lunch, and take a much-needed break from caregiving. This break though, came after two months of 24/7 care. As we drove away from our house, we felt as if we were in a daze. The experience was surreal because we had been intensely focused on Mom, attending to her needs night and day. It was a jolt to our systems to break that routine. We needed the opportunity to step back and look at our situation, put a little distance between us and our routine, and experience relief and a bit of sadness that came with it.
According to Eric Kolb, cofounder of Songs and Smiles, “Dementia creates ambiguous loss. Your loved one is here, but not here. It’s confusing. There’s no timetable, so no sense of closure.” There’s a grieving process to go through—an unusual grief because you mourn the loss of someone dear, but they’re standing right in front of you. This includes my mother-in-law: a beloved matriarch, loving teacher, generous soul, sweet Christian, incredible artist, and world traveler. Once we accepted this was our reality (and dementia was Alice’s reality), we learned to find joy in unexpected places: a memory, a smile, a song from the 1930s.
I love walking into Mom’s room and seeing her face light up because she has visitors. Lately, one of her favorite questions is, “How old am I?” She has had a mantra for every year since turning ninety-four. Last year, it was “ninety-six and it still ticks.” When we answer with “ninety-seven,” she responds, “and going to heaven.”
We hope Mom makes it to one hundred. To which she will say, “Made it!”
Sources
- Alzheimer’s Association. “Early-Stage Caregiving.” https://www.alz.org/help-support/caregiving/stages-behaviors/early-stage. Accessed 20 Sept. 2022.
- ———“Inside the Brain: A Tour of How the Mind Works.” https://www.alz.org/alzheimers-dementia/what-is-alzheimers/brain_tour_part_2. Accessed 20 Sept. 2022.
- ———“Middle-Stage Caregiving.” https://www.alz.org/help-support/caregiving/stages-behaviors/middle-stage. Accessed 20 Sept. 2022.
- ———“Late-Stage Caregiving.” https://www.alz.org/help-support/caregiving/stages-behaviors/late-stage. Accessed 20 Sept. 2022.
- ———2022 Alzheimer’s Disease Facts and Figures. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf. Accessed 20 Sept. 2022.
- Brackey, Jolene. Creating Moments of Joy: Along the Alzheimer’s Journey. 5th ed., Purdue University Press, 2017.
- Kolb, Eric. “Ambiguous Loss and Dementia.” Songs and Smiles. 2 Oct. 2021. https://www.songsandsmiles.com/ambiguous-loss-and-dementia/.
- Nair, Balakrishnan, et al. “Music and Dementia,” Degenerative Neurological and Neuromuscular Disease, no. 3, 4 Sept. 2013, pp. 47–51. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6065612/pdf/dnnd-3-047.pdf.
- National Institute on Aging. Tips for Coping with Sundowning. U.S. Department of Health and Human Services. https://www.nia.nih.gov/health/tips-coping-sundowning. Accessed 2 Oct. 2022.