Remaining focused on the present, instead of grieving the past, and caring for caregivers are sometimes the best ways to help a parent living with Alzheimer’s disease.
Amy Calandra remembers riding in the car with her dad listening to the oldies station on the radio. She recalls the many Father’s Days her family spent celebrating him at Six Flags Great America. She laughs about her dad’s love of Corvettes and good jokes, and relishes in his ability to fix up her childhood home.
“He built all the cabinets in the garage to keep all the tennis rackets and skateboards and things organized. And with a couple friends, he built the deck off the back of our house and the entire hole to sink our above-ground swimming pool into,” Calandra told Healthline. “He was strong and did so much; to see him go to this is heartbreaking.”
Six years ago, her dad was diagnosed with Alzheimer’s disease at 70 years old. Since then, his cognitive abilities have declined, and he has experienced intense physical symptoms such as difficulty getting up and walking.
“He started falling a lot, and then one time, he fell out of bed and my mom tried for over an hour to get him up until I got there to help,” said Calandra.
A wheelchair eventually became necessary, and for the past 2 years he’s been bedridden in hospice at home.
While he’s forgetful and not at the mental capacity he was before diagnosis, Calandra says the physical changes came as the most shocking to her and her family.
“My mom’s mom died of Alzheimer’s, so I saw what it could do. My grandma was mostly affected mentally… I thought it would attack my dad mentally before seeing him physically deteriorate, but it has attacked the part of his brain that controls his body,” she said.
While the disease progresses differently for each person, physical changes are often symptoms of mid- to late-stage Alzheimer’s, says Ruth Drew, director of information and support services at the Alzheimer’s Association.
“At some point, people can forget how to walk, can have balance problems, may need to use a walker but forget to use the walker so they get up without the walker and fall down… and at some point, they’re not going to be able to walk,” Drew told Healthline.
Many times, people with Alzheimer’s eventually need help with toileting, dressing, and eating, she adds.
For adult children like Calandra, witnessing these changes can be devastating.
“It can be upsetting to be with a parent who raised you and you’ve known as robust and capable. To see them in the light of being dependent and incapable can bring up all kinds of feelings of grief,” Tom Meuser, PhD, director of the Center for Excellence in Aging & Health at the University of New England, told Healthline.
This can be the case whether you have a close, supportive relationship with your parent or a complicated one.
“If you had a conflicted relationship with your parent, estrangement, or distance emotionally or physically, and now you’re thrown into this situation where you have to care for someone you have mixed feelings about — perhaps in an intimate way like toileting and feeding — that can have a whole set of reactions attached to it,” Meuser said.
For Calandra, that means dealing with feelings that stem from missing the father with whom she shared a close connection.
“He was a great dad and a funny person and I miss talking to him so much. It’s a slow acceptance that he’s not the same person I’ve always known; something that I struggle with every time I see him,” she said.
Meuser points out that there is a point in the progression of Alzheimer’s disease where the person has undergone psychosocial death — meaning who they have largely been most of their life is absent. This occurs because the person has lost his or her historical memory and lives only in the present.
“Forgetting children or spouses is a hallmark of psychosocial death. The body is there but the person is radically different. That is often a trigger for grief and loss, more so than bodily death in advanced dementia,” he said. “By the time bodily death happens, there is a sense of relief. And there can be feelings of guilt too.”
Despite the changes that occur with a loved one, Drew says connecting with them in a way that resonates with them can be meaningful for both parent and child.
“People with Alzheimer’s can retain a core sense of self deep into the disease when their brain is still affected. There are things we can do to help support that rather than [create] an environment that shuts them down,” she said.
For example, Drew recalls a woman who found that talking to her father about the next-door neighbors from her childhood, reading him his favorite poems, and playing him is favorite songs, resonated with him, and as a result brought her comfort during visits.
“Even though he couldn’t say her name, he knew she was there for him and that she was one of his people. They were able to have a wonderful connection that was built on a lifetime of being family even until the end of his life,” Drew said.
She refers to this approach as person-centered care — focusing on the person over the disease.
Calandra practices her own form of person-centered care by tapping into her father’s love of humor.
“When I visit, I like to make him laugh. Even though his laugh is different, I know he’s happy because he smiles and laughs when I say silly things,” Calandra said. “I hold on to the fact that he still recognizes me and my voice.”
In the process of trying to comfort a parent with Alzheimer’s, sometimes the primary caregiver’s well-being gets overlooked.
Calandra’s mother is the main around-the-clock caregiver to her father.
Since he’s in home hospice, a nurse visits twice a week to check in and clean his catheter. Another healthcare professional visits three times a week to bathe him. Her mom gets out of the house twice a week when a retired nurse’s assistant comes to stay with Calandra’s dad for 5 hours. During this time, she shops, runs errands, and goes to her own doctors’ appointments.
“Day and night, it is stressful for her, but she wants to do everything for him, “Calandra said.
In spousal care situations like the one Calandra’s parents face, Meuser said the healthy parent can put their own well-being in harm, and that caregivers are at increased risk for anxiety and depression.
“Caregiving is not only the time it takes to care and the act it takes to care, but there is real psychic stress with respect to witnessing change and decline and the prospect of impending death,” said Meuser. “Often times [spouses who are caregivers] will carry a very heavy load and not share with their adult children how heavy that load is. The adult children only learn when there is a real collapse of the caregiver parent, and then they end up in the situation where they have two people needing help and care.”
To support her mom, Calandra and her three siblings take turns visiting their parents.
“Many times, the visits are more for me and my mother because she needs interaction with people who are responsive and engaging. She’s secluded and suffering in her own ways. Sometimes my siblings and I think she’s being robbed of the good years she has left,” Calandra said.
Drew said giving a caregiver a break like this is the best way you can help someone caring for a person with Alzheimer’s. Also, taking on small chores such as cleaning, doing laundry, paying bills, providing lawn care, servicing the car, and picking up groceries can help in big ways.
“It’s not about barking orders, but saying [something like], ‘Mom, clearly there are things that you do that only you can do, but are there things that I can do that would be helpful or it doesn’t matter who does them as long as they get done?'” said Drew.
Meuser agreed, noting that sometimes a more extended break is needed, such as one that can be achieved by putting a loved one in an adult daycare periodically.
Calandra’s father receives 4 days of overnight respite care every 3 months. She says this is a time for her mom to see family and friends and recharge.
“It’s a short time, but really important because it’s the only time she can think about herself,” said Calandra. “Sometimes (we) will go away for a few nights, and I know she enjoys that.”
For family far or unable to visit often, providing emotional support is a simple way to support a caregiver, noted Drew.
“Let the person know how much you appreciate what they’re doing and the fact that they’re doing it is such a gift to the person with the disease and to the family. Caregivers feel isolated and that whatever they do they are failing, so [showing] appreciation… and supporting what they’re doing rather than criticizing it means a lot,” she said.
Calandra can attest. She says rather than challenging decisions their mom makes about her father’s care, she focuses on showing up for her.
“I miss talking to my dad so much — about my life, and silly things and just everything. But I know he is not who he used to be,” Calandra said. “It helps to focus on the time I have left with my mom.”
Still, she admits it can be hard to focus on one parent over the other. While there can be guilt around spending time with a healthy parent when the other parent is ill, Drew says think about it in terms of human connection.
“We all need human connection in one way or another and helping people find connection that is meaningful to them and giving them the breaks that are helpful to them is what really matters,” said Drew.
Meuser notes that those in late-stage Alzheimer’s will not recognize that you did not prioritize them in certain moments when the caregiver needs your attention.
“The parent who is the caregiver is going to remember the support, and they need it,” said Meuser. “There is no harm in prioritizing the caregiver parent in that situation.”
For information about helping a caregiver, the Alzheimer’s Association offers around-the-clock support through its online community and hotline (800-272-3900) as well as face-to-face support groups around the country.
“When it comes down to it, it’s still the family that’s providing the bulk of the care and carrying the heaviest burden of this disease, and that won’t change until we find a way to treat Alzheimer’s,” Meuser said. “It requires constant messaging to support families to realize that there are structures to help you and to not let it overwhelm you to the point where you can’t reach out.”
Cathy Cassata is a freelance writer who specializes in stories about health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.