When Ty Lewis’ mother, Gertrude Jordan, was diagnosed with Alzheimer’s disease in 2014, her daughter was 6 and a half 4 years old. At that time, Lewis said, he explained his grandmother’s condition to them honestly and with compassion.
He told them: “Grandma is no longer the same as before. He lost his memory and that means he forgot some things. So what we’re going to do is we’re going to be affectionate, we’re going to be gentle with him,” Lewis told Talk News.
In 2021, Lewis’ father passed away, and his mother moved into his home so Lewis could be his primary caregiver. The girls, now 16 and 13, play an active role in caring for their grandmother.Ty Lewis moved his mother into his home to care for her after his father died.
When his mother was first diagnosed, Lewis felt a lack of support for his family. He remembers sitting in the doctor’s office with Jordan. “(The doctor) gave me a pamphlet and said, ‘Your mother has dementia.’”
“I’ll never forget looking at my mom and seeing her cry, and I’ll never forget the feeling of emptiness that I felt inside, and just saying, ‘This isn’t the end,’” Lewis said.
Ten years later, we can see that moment as the beginning of a new chapter in the family, full of challenges but also joy. Lewis, who lives in Southern California, has created a community of nearly 100,000 followers on her mother’s Instagram page. In sharing her story, she becomes an advocate for caregivers. She has also completed specialized training to become a certified Alzheimer’s and dementia care coach and dementia practitioner.
Like Lewis, many dementia caregivers are also parents raising children, a situation sometimes called the “sandwich generation” that can be stressful and burdensome for the people providing all that care. In a survey of 500 caregivers, 50% of sandwich generation caregivers caring for a loved one with Alzheimer’s disease or dementia said they felt like they were “drowning” and “unprepared for the role.”
An additional concern for caregivers who are parents is how to talk to their children about dementia and the decline of older family members. The same survey found that 96% of caregivers found it difficult to discuss the diagnosis with their children, and 78% reported that it was “one of the most difficult conversations they have ever had as a family.”
Here are some things to keep in mind when communicating with your child about a diagnosis of dementia in the family.
Show with examples.
Don’t worry too much about finding the right words to explain what dementia is to your child.
“They learn from our actions,” Lewis said. His daughters, he said, “watch how we serve him.”
“Because they saw us and what we were doing, they stepped in without hesitation,” Lewis said.
If your child sits at the table and watches you feed your relative, then they have basically received the training to do the task themselves.
Find ways for them to make a meaningful contribution to senior care.
Lewis said she doesn’t make her daughters “do any heavy lifting,” but one of her teens helps her mother get dressed, and both sometimes help her go to the bathroom.
Even younger children can use their skills to help. Lewis mentioned that his daughters spent time dancing and singing with their grandmother.
“My youngest is a singer, so she always had singing for him because music therapy works,” Lewis said. “And my oldest is a dancer, so he dances around the house with her.”
Other ways children can help care for their older relatives is by feeding them, reading them books, or playing games. For young children, going for a walk, drawing or even playing with sand or other sensory objects can be good activities to do together.
Any activity your whole family does will give your child a chance to interact with his or her relatives.
Merle Griff, a family therapist in Florida who treated her mother and then her husband when her children were adults, told Talk News that her oldest son “always talked about” taking his mother with them when he went to pick an engagement. ring. “I think they feel like they still have a lot of experience with it,” Griff said.
Because Griff’s mother suffered a stroke and has aphasia and cannot use one side of her body, communication is “challenging.” Griff’s cubs had to adjust and learn to read their mother’s signs, which he said included a lot of pointing with the good hand, as well as eye rolling.
“They can’t run around and talk to him at the same time,” Griff said. “They had to sit, facing him, when they communicated with him.”
Children may also realize that they need to slow down for less mobile relatives. Griff believes that the process of adapting to relatives’ needs makes children “stronger” and “more resilient,” as well as more patient and kind.
Use media resources to start conversations with your child.
Pharmaceutical company Otsuka recently released a short animated video entitled “Where the Ocean Meets the Shore: Navigating Alzheimer’s Together.” It tells the story of a grandmother from her granddaughter’s perspective. There are also a number of books – with different titles for different age groups – that cover this topic.
Resources like these can provide an opportunity for parents to talk to their children about what’s happening. Even when children are small, they will know that things are changing around them. Lewis recommends “inviting them into the conversation…and inviting them into the caregiving process.”
Make time for your children – and yourself.
With appointments and paperwork adding to the burden of at-home caregiving, sandwich generation caregivers often feel short of their most precious resource: time.
In the survey mentioned above, sponsored by Otsuka, 80% of parenting parents said that time with their children was sometimes difficult due to parenting responsibilities. This number is even higher among working parents (86%).
First, Griff suggests that you acknowledge that you can’t spend as much time with a child because of your upbringing. “Sometimes you have to say to children: ‘I understand that sometimes you may be upset or angry that I can’t spend as much time with you right now. But we are a family and we have to stick together and sometimes one of us needs more time than the other… Nowadays Grandma or Grandpa needs more of our time. So we have to stick together as a family and give them that time.’”
While you may not be able to spend a lot of time with your children, setting aside a little time to dedicate your attention to them can make a big difference. Try to do it with regularity.
And don’t forget to take some time to connect with your partner or romantic partner. You will also need to take breaks from your caregiving duties regularly.Granddaughter Gertrude Jordan helped care for him.
Communicate openly, using developmentally appropriate language.
“I have nothing to hide,” Lewis said. “We are very open. We are very honest.” She noted that she told her daughter about the financial hardship the family was feeling because of all the care costs.
Griff recommends calling any big changes, such as relatives coming to stay, with advance notice, so kids have time to adjust.
It is also important for children to know what the disease is and what symptoms may occur. “They have to understand that the changes they see in their grandparents are a result of the disease. “Unprecedented things are possible because of this disease,” Griff said. “For example, sometimes people with Alzheimer’s disease or dementia can get angry. They go from being very patient people to being very angry and losing their patience.” This shift in their relative’s personality may be difficult for children to understand.
One of the phrases Lewis mentioned using with her daughters when their grandmother experiences new symptoms is: “Grandma is about to enter the next stage.”
Lewis also recommends Otsuka’s short film, with its metaphor of returning something to the sea, as a way to approach the subject of death.
“My mother being here shows our children that life is a cycle,” Lewis said. “Our focus is to make my mother’s living situation the best it can be while she is here.”
Griff mentioned that when it comes to death, it is the loss of a parent that is always on children’s minds. It is important to reassure them that you yourself are healthy and will be here with them for a long time.
He also advises against describing death as “going to sleep,” as this can make children afraid of going to sleep.
Focus on the positive, and on what your family gets from parenting.
Being transparent is good, but you also want to make sure that your kids aren’t just listening to you talk about the sacrifices your parenting situation required. “Kids are obviously going to pick up on that, and that’s the same attitude they’re going to have,” Griff said.
Although this requires a lot of sacrifice, children can understand your motivations for caring for your relative, and can understand the benefits of the situation.
Lewis said she and her husband made the commitment to care for her mother because they wanted her to “age out.” However, his presence at home has a positive impact on all family members.
“Keeping my mom at home not only benefits her, it benefits us, because it keeps me humble as a daughter,” Lewis said.
For her own daughters, she said, “it teaches them to be loving. It teaches them to be kind.”
“When we were at home, serving my mother and taking care of her, it did something inside my daughter,” Lewis said. “And as they get older, they will learn how to be good citizens, if you will, in society, and they will learn how to be more compassionate, affectionate and patient.”