Teepa Snow, a leading educator on dementia care, knows that people who find themselves responsible for taking care of a loved one with dementia can feel like they’ve been hit by a freight train. They aren’t sure where to even begin, but Teepa says it starts with grieving.
“One of the things we don’t do is allow ourselves to grieve a loss,” she shares, “separate from the person.” She says that until a caregiver mourns the loss of their freedom, choices and what the future looks like, they won’t be able to support their loved one.
Put your oxygen mask on first
Just like flight attendants tell us on a plane, you must take care of yourself before you are able to take care of anyone else. Seek both knowledge and emotional support when you start this journey, Snow says.
It’s also important to know your strengths and weaknesses and use them effectively in your caregiving. Dementia is a “more deadly diagnosis than cancer,” and being a caregiver looks different for everyone. Some may need to manage the overall care, while others will be more hands-on, dealing with the day-to-day decisions like those relating to finances, living arrangements, physical requirements and emotional support.
Knowing your strengths, she says, lets you do what you’re best at rather than trying to “take on the whole phenomena” of dementia caregiving.
Communication and patience are key
Communication is by far the most stressful and challenging component in managing someone with dementia. Logic flies out of the window, and you may find yourself frustrated with conversations.
Someone with dementia may not be able to find the right words or language that they’re looking for, and that can be hard to deal with. Snow says in this case, slow down. Repeat what your loved one says so he or she can process it.
It takes an inordinate amount of patience, but also curiosity and endurance, to communicate effectively, says Snow.
Caring for yourself
Snow says that because we tend to treat others the way we want to be treated, that can cause a disconnect in caregiving. “Know who they are as a human being and what they need,” she says. Consider what’s best for your loved one and don’t project your own wishes and preferences on your plan to support them for the rest of their life.
The way you care and support your loved one will more than likely change over time, so flexibility is paramount, says Snow.
In the past, dementia has been stigmatized, and caregivers have hidden away what they considered to be an embarrassing situation. But this is changing, which is good news for caregivers.
“Dementia is a life condition, not just a health condition,” Snow says. She stresses that it’s a condition that affects us all, and encourages caregivers to realize: your health matters too.