How Caregivers Can Accept Help
Diana Lawton experienced a lot of feelings she didn’t expect when her mother was diagnosed with multiple myeloma in 2013. Guilt, anger, stress, resentment all flashed through her mind -- and then she felt bad that she was feeling any of these emotions at all, with a mother facing a deadly illness.
“The surprising thing about caregiving to me are the emotions that came out that I wasn’t anticipating,” she said. “That’s something that caregivers need to accept.”
These unexpected feelings can be uncomfortable, but they are actually quite normal and common for caregivers.
In Diana's experience, cancer affects not just the patient, but the patient's family and loved ones as well. Too often, the doctors and other medical staff are only concerned about the person who is ill, and the patient's caregivers are not as much of a priority. That’s why it’s important for caregivers to seek out and accept help from others. It’s easy to get worn down from the emotions and from constantly dealing with medical issues and appointments. Her mother’s dementia diagnosis also added to Diana’s stress.
Diana lives in Bedford, Massachusetts, and her mother, who was diagnosed when she was 70, lives in Connecticut with Diana’s stepfather. While her stepfather is the full-time caregiver, Diana was a co-caregiver for several years, driving to Connecticut weekly to take her mother to medical appointments. Her mother's dementia often causes her to lash out in anger at Diana and her stepfather when they shared information with medical staff or tried to encourage her to take medications.
“She feels we’re trying to run her life, to tell her what to do,” Diana said. Her stepfather does all the shopping and cooking, also reminding her to take her medications, scheduling and taking her to appointments and working full-time.
While caregiving can be emotionally taxing, Diana has learned a lot about how to cope throughout her journey. She has some tips on how caregivers can accept help.
Take a break
Taking a break from caregiving can mean different things to different people. Diana said her stepfather really enjoys his job, as well as his woodworking hobby. That’s how he mentally escapes from the caregiving role. He doesn’t let his wife’s anger get to him the way Diana does. Diana’s way of coping with the stress is by talking to people about her mother’s condition. She says it’s important to tell people how they can help. Her stepfather doesn’t find that talking about it is helpful, but Diana finds it cathartic.
Join caregiver support groups
Whether it’s a formal support group or your network of friends, socializing and sharing stories about what you’re going through is helpful. Diana said there are a lot of caregiving sites1 that she reads when she’s going through a situation. She doesn’t necessarily participate, but reading about what helps others and how other people handle things is helpful. She also belongs to a knitting group, where many people have family members with different diseases. “We all sympathize a lot with each other. I don’t feel as alone hearing what other people are going through or have gone through.”
Get help from the doctor
It’s not always easy to talk to the doctor alone, but Diana said it’s easier to share what’s happening with her mother’s care if her mother isn’t in the room. She said her mother, as well as many others going through treatment, tell clinicians what they want to hear. That can affect their medical care. If the doctor won’t talk to her alone in person during an appointment, she’ll call. “We call the assistant in the doctor’s office to let them know what’s really going on,” she said. When the physician has the full story, it helps her with her caregiving. While her mother gets mad at her for telling the doctor the truth, her care could be jeopardized otherwise.
“I’m good at setting limits,” Diana said. Her mother’s dementia was causing her to yell at Diana frequently, and it was affecting Diana’s mental health. “I had to step away. You’re not doing anybody any good if you’re miserable and making yourself sick.” She frequently calls her stepfather to check on him and ask about her mother’s health.
Avoid the “shoulds”
In addition to feeling guilt, Diana said it’s important to avoid the “shoulds” as in “I should be there,” and “you shouldn’t feel this way.” She acknowledged that she wishes things were different, but she has a full-time business, a child at home, and other responsibilities. She wishes things were different and that she could help out more, but it’s too difficult.
Diana said she and her stepfather have a great relationship and use a lot of gallows humor to deal with her mother's cancer and dementia. “Sometimes you just have to laugh,” she said. “I feel like if you can laugh at certain things, that’s the ultimate power. It takes a strong person to laugh in the face of cancer.” That doesn’t mean laughing at someone but being able to laugh about a situation and not feel bad about it. “Making a joke doesn’t make you a bad person.” She encourages people to use humor with caregivers or just take them to a funny movie to get them laughing.
“My heart goes out to anyone who is a caregiver. It’s stressful,” she said. Even if someone isn’t closely involved in the care, it can be incredibly stressful for them. “Everyone has their own way of coping.”
1. Caregiver Support Groups. American Cancer Society. https://www.cancer.org/treatment/caregivers.html. Accessed May 1, 2020.
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