We asked an expert for advice on celebrating special moments when you’re caring for someone with cognitive decline.
For many families, annual celebrations are a time to come together and make lasting memories. With the summer approaching, many of us are excited about upcoming milestones like graduations or weddings, and holidays like Memorial Day and the Fourth of July, all of which can be a time to connect with the people we love. But what happens when the person you’ve made decades of memories with — like a parent or a partner — no longer remembers them?
An Alzheimer’s diagnosis is devastating, and it’s also devastatingly common: It’s estimated that half a million Americans are diagnosed with the disease each year. Watching a loved one deal with Alzheimer’s can feel lonely and isolating at the best of times, but is especially difficult during events you usually look forward to. If your family member or friend is in the late stages of Alzheimer’s, and agitated by group gatherings, how can you find moments of joy while putting aside the memories and expectations of previous years?
Nobody understands how to navigate these difficult moments better than Isabel Souffront, MD. As a physician at Conviva Care Center, a Humana Inc. company, Dr. Souffront practices senior-focused care with a specialty in dementia and Alzheimer’s disease. She’s also the primary caregiver for her 93-year-old mother, who has Alzheimer’s, as well as her 95-year-old father, who has dementia. Dr. Souffront gave us some advice on how caregivers can handle stress — both their loved one’s and their own — and honor important days with a bit of joy.
Adjust your traditional routine
Holidays don’t stop just because a loved one is sick. Significant family events are important to everyone at home, and you can find ways for your loved one to participate in the celebration — you just might have to get creative.
“If I have guests, we make sure my parents have eaten before everyone else sits down for a meal,” says Dr. Souffront. “I’ll feed them about an hour before everyone else, so if they need any help, I don’t have to stop my meal to help them with theirs.” This can also ease some tension at the table if guests aren’t sure exactly when or how to jump in and help. “It’s also not fair to the patient to upend their routine and place them in a new situation that could be agitating,” says Dr. Souffront. “I let my parents have their quiet dinner at the table together with assistance, where I know it’s much more likely for things to be calm.”
There are other adjustments you might have to make, ones that could disappoint people, but Dr. Souffront stresses needing to prioritize the patient: “We always used to have a big Christmas tree in our living room in December, but as my mother’s condition deteriorated, the lights started to irritate her, and her agitation becomes my agitation,” explains Dr. Souffront. “So we got rid of the tree. My kids were disappointed, but it was the right decision for my mom.” She suggests trying to find a compromise: “This year, we decided to decorate the yard instead, so we could still keep part of our old tradition.”
Keep things calm
Holidays like the Fourth of July can be rowdy: people are laughing and talking, there’s music playing, and there might even be fireworks. Even if your loved one has loved Independence Day in the past, all this stimulation may be overwhelming now.
“The most helpful thing you can do is prepare beforehand,” Dr. Souffront explains. “Before guests arrive, I’ll make sure my parents have used the bathroom and are in their comfortable clothes, so I don’t have to worry about that later.”
She also suggests creating a calming and quiet space for the person in your care, away from any stressors. “If you’re fortunate enough to have a second entrance in your house, ask people to use the door where they’re not going to pass by your loved one in droves,” suggests Dr. Souffront. “I’ll keep my parents in the room furthest from guests, and surround them with familiar or comfortable things. My mother has a fidget toy she loves, so I’ll make sure that’s within reach. I’ll put on soft music they like. My main goal is to ensure they don’t end up in a room full of people they don’t recognize, because that can be terrifying.”
If you have the space, after your loved one goes to bed, move the celebration to a place where it won’t be too noisy. And staying up with your guests after that is a great way to celebrate, if you can’t fully engage earlier in the day.
Prepare your guests
As a caregiver, it’s crucial to set boundaries with guests beforehand. Even if your nephew is excited to see his grandmother, the priority has to be making her feel comfortable. It’s awkward to tell anyone they can’t go speak to someone with whom they used to interact freely, so Dr. Souffrant suggests taking people into the room to visit one at a time: “I’ll walk over with the person who wants to see my mother, and whisper in her ear that there’s someone who wants to visit,” says Dr. Souffrant. She also emphasizes letting guests know they should speak directly to the relative and respectfully introduce themselves. “With my father, if he seems calm, I’ll suggest my family members talk to him and hold his hand, even if he’s not responding,” says Dr. Souffrant. “I also keep these visits brief, so nobody gets overwhelmed.”
When you need help, ask for it
It’s important to acknowledge your own emotions. For some, that might mean taking a moment alone to cry: “If you need a minute of calm, ask someone who the patient knows to sit quietly with them for a moment,” suggests Dr. Souffront. “People can’t read your mind, so if you need some time for yourself, either alone or with other people, ask for it.” If you’re usually the one to prepare the meal or do the dishes, ask someone else to take over this year so you can take a minute to enjoy yourself.
Most importantly, says Dr. Souffront, do what’s right for you: “If you usually have a big party on the Fourth and you just can’t handle it this year, ask someone else to host. Don’t feel guilty or worry about how others might react. The people who love you will understand — you have to prioritize the person you’re caring for and yourself.”
