Planning a vacation can be hard, but it’s even more difficult for those who are acting in a caregiver role for a family member or friend. Because it’s not a paid position with vacation days, how can you guarantee you get the breaks you need?
Alyson Schafer, a family therapist based in Kingston, and her two grown daughters are caregivers for Ken Schafer, 65, who was diagnosed with Multiple Myeloma. “This is a cancer of the blood that affects your immune system and it creates lesions in the bones until they break,” said Schafer.
Because of the intense treatments that Ken is undergoing, Schafer and her daughters split the caregiving three ways. “That means each person has a two week break before being the point of care.”
Splitting the caregiving allows for a break, but how can you keep track of who is doing what, and who knows what? The Schafers deploy technology to help them wherever they can. This is extremely important as Ken not only has a long list of specialist appointments to get to, but he also takes approximately 300 pills per week, with changing dosages. They get together weekly to do a “pill count” to see if refills are required.
“We share a medical blog on the app Notes that captures all the details of the medical appointments or if Ken is having any significant changes.” Schafer said. “There is always a full history of anything that is going on so that we have shared intel about his current state at all times.”
Sharing this information can make the transition seamless from one caregiver to another. But what if you are the sole caregiver?
Three years ago, pc28media personality Taylor Kaye’s husband Greg had a massive stroke which left him nonverbal and paralyzed on his left side.
“He also has expressive aphasia, which makes communication frustrating at times and sometimes impossible for me to figure out his needs,” Kaye said. “Greg requires two people to help him get up, and every part of his daily care — from mobility to hygiene — requires assistance. It’s a full-time job, and while he’s got an incredible support system, his social schedule falls mainly on me to organize with his team.”
Can she ever take a break? “That requires plan A, B, and C—sometimes even a D. I don’t just plan for things to go right; I expect things to go wrong. What if his wheelchair breaks? I have a backup wheelchair. What if he has a medical episode? I have my brother and Greg’s best friends on standby.
“Last year, my daughters and I were in Los Angeles for work when Greg had a catatonic episode. The team had to FaceTime me to figure out what plan A, B, or C was,” she said. “That five-hour flight back from L.A.? Pure torture. I had no idea what was happening, and I had to trust the amazing people around him. I’m beyond grateful for Greg’s friends, his team of medical professionals and my brother — without them, I don’t know what I’d do.”
Despite some concerns that arose during her Los Angeles trip, she feels it’s extremely important for caregivers to take care of themselves.
“Caregivers have to recharge. I’ve met so many caregivers and they all told me the same thing. ‘Take care of yourself, or you won’t be able to take care of them.’ If I go down, the whole family goes down.”
Karen Trotter has been with Schlegel Villages in Brampton, Ont., for 23 years, 21 of them spent as a personal support worker (PSW) in the dementia unit.
“Being a PSW is a calling,” she said. “You have to have patience, and most importantly you have to like what you do. If you don’t, you’re not going to last.”
Even devoted caregivers experience burnout and, Trotter said, it’s important for caregivers to know where their end is, and that can be a challenge. “Each day is different. You don’t know what challenges you will meet.”
Trotter is from Newfoundland and would start thinking about her August break sometime in April. “You can tell when you need to take a break.” she said. And breaks don’t have to just come in the form of an actual vacation away. Caregivers should also look for ways to break it up during the daily routines as well.
“When I am not on duty, I am working far harder to do all my good self-care” said Schafer, who plays pickleball, and travels to see friends.
Kaye agrees with that idea. “I make it a point to do something special every month. It could be a staycation or even just getting my nails done,” she said.
