The first time you break down and say, “I need help. I have to hire a caregiver,” it’s usually at a really stressful moment. You dial an agency and get them to send someone out as soon as possible. If you’re really lucky, it all works out—the caregiver is experienced, responsible and knows more than you do about caregiving. But that’s not always the case. I finally called for a caregiver when my dad’s bone cancer was overwhelming him, and mom had reached tilt, and I was stressed out working and running back and forth trying to help with feeding and meds and giving mom a break. I just looked up an agency and dialed, and was grateful that someone could come ASAP.
Where I live, agencies charge about $20 an hour. They keep half of that. So already the caregiver (who isn’t necessarily working a 40 hour week) is barely making enough to get by. My experience included caregivers who were late, or just didn’t show because they didn’t have a car and couldn’t get a ride. One caregiver had to bring her daughter because she couldn’t find a baby-sitter. Another caregiver who was hired to take care of my father and give Mom a break, kept knocking on her door to ask Mom questions, which drove her crazy. Another, who I told to eat anything he wanted, made the fatal error of eating my mom’s special chocolate stash. I had the unpleasant job of firing people who really needed a job. Many of my friends had the same experience. They described caregivers who spent their entire time on the phone, or watching the TV—people who never asked about the patient, but just put in their time.
Before this goes too far into sounding like caregiver bashing, I’d like to point out that caregivers are the most over-worked and underpaid people in the world and so many of them make are practically saints in the way they make all of our lives better. When hiring, it’s important to remember that hiring the perfect caregiver for you and your loved one is like hiring the perfect baby-sitter. It’s a two-way street. It’s okay to go through an agency, but be sure to ask for the most experienced caregiver and ask for references that you can call. Ask friends, senior services, doctors, assisted living centers for recommendations of people who aren’t with agencies. You might find the experienced, knowledgeable person you are looking for. (My dad was happy with anyone who would talk to him and was pleasant. My mom felt more comfortable with male caregivers for my dad. Something I learned in the process.) Once you find the person, it’s important that you let him know in clear, specific terms, what you expect him to do. Write it down. Besides meal times and meal suggestions, toileting and bathing instructions, it’s also good to list what you would like for the caregiver to do when the patient is asleep. Light housekeeping and laundry often goes with the territory. Some patients drift in an out of consciousness. Reading to them from their favorite book or listening to soft music can be something you can request. My dad loved watching clips on YouTube of his favorite singers. Not all patients want the TV on—the noise can be disorienting. List what you do and don’t want to happen while the caregiver is giving care.
A friend mentioned how distressing it was that the people coming to look after her mother didn’t know what a remarkable person she was. A biography, with the patient’s special interests and photos, are a good way to introduce a caregiver to her patient. Katie often mentions how patients just want someone to hear their story. Encourage the caregiver to ask questions about your loved one’s life.
Be sure and provide a notebook for the caregiver to keep a daily record of activities, meal times, any toileting time and when meds were given. Ask him to report the mood and condition of the patient. That way, if another caregiver is taking the next shift, she’ll know what has happened that day and the state of the patient’s mental and physical health.
It’s always a little uncomfortable when you aren’t used to being a boss, but remind yourself that the caregiver isn’t a mind reader. If there’s something you’d like to change, be straightforward and kind.
—Jahnna