Caring for a loved one with ALS can bring out some of the best qualities in a person ‒ commitment, compassion, and resilience among them. At the same time, it is a stressful, emotionally draining, and sometimes overwhelming role. Being a caregiver to someone with ALS means new responsibilities and considerations as well as unexpected challenges including how to talk about the disease with friends and family.
There is no single approach to communicating the news of an ALS diagnosis, providing updates, or requesting support. However, many caregivers would agree that finding reliable information about the disease and its symptoms is an important first step. Understanding what ALS is and how it affects your loved one who has been diagnosed can help everyone adjust to the reality of the disease and answer questions from friends and family who, more often than not, will know very little about ALS.
Shirley Ma, whose husband, Henry, passed away from ALS this past October, says it was important for her to acquire knowledge and to come to terms with the disease. Her advice comes from a place of personal reflection and compassion for others. She says, “Try to educate yourself about ALS. Learn as much as you can. Accept the diagnosis and prognosis. Then you can learn to live with it and talk openly with the people around you.”
Shirley admits, however, that knowing how much detail to share and how much to withhold can be tricky. People often have a very
hard time hearing what you have to say, which is one reason some caregivers may choose to withhold information or to paint the situation in a more positive light. As Henry’s symptoms worsened, Shirley remembers the challenge of speaking about his decision to accept a G-tube inserted through his stomach to deliver nutrition once he could no longer swallow. “Some folks would tell me he would get better and eat using his mouth again. They had trouble accepting the reality of Henry’s condition so I felt there was no point in sharing what made them too uncomfortable.”
Lianne Johnston, ALS Canada Regional Manager for the Champlain Region, says she often sees some family members or friends withdraw altogether because they are too uncomfortable. “People can be so afraid to say the wrong thing that they say nothing, or they avoid you.” This can be particularly hurtful when it happens with a close connection or relative. On the other hand, says Lianne, “it is sometimes the people you least expect who come to the table, who stay in touch and who offer their support.” She believes there is no way to anticipate people’s reactions, especially when the subject is one as difficult to talk about as an incurable disease like ALS, so it is important to remember that when someone withdraws it is often because they are unable to confront their own fears.
No matter what the response on the other end of the conversation, communicating with others when you are dealing with your own pain is hard. “Too many phone calls can be draining,” says Shirley, so it is important to remember that you don’t have to pick up the phone every time it rings. Receiving too many visitors or repeating the story to many different people is also exhausting for caregivers and their loved ones with ALS. Lianne suggests using technology as a means to relay information, for example through Facebook or a group email. That way, she says, “you avoid many of the conversations and you can be in control of the information you share and how people communicate with you.”
Remembering to prioritize your own needs during a time of great stress is important. Shirley believes “you have to learn self-care so you have the strength and well-being to care for a loved one who comes to depend totally on you.” Melissa Van Tuyl, ALS Canada Regional Manager for Hamilton, Niagara & Haldimand Brant, shares the example of a caregiver running into a friend at the grocery store who asks how her husband with ALS is doing. Oftentimes, says Melissa, the caregiver will just put on a “brave face” rather than explaining the situation. On the other hand, the question from the friend might be just the opportunity the caregiver needs to “get things off her chest. It’s really up to you what you say, whatever makes you comfortable.”
When supporting caregivers, Melissa tries to remind them that “friends and family often want to help but don’t always know how.” Learning how to communicate your needs can be tremendously helpful. During Henry’s last weeks in hospice, Shirley was with him the whole time. She remembers how much she appreciated having one person coordinate a personal care team to bring home-cooked meals and to offer her a few hours of respite. Having one of her friends as a “point person” to help with scheduling meant that Shirley didn’t have to respond to each request individually. Looking back, she is grateful for each act of kindness she received and happy to share her story in the hope that her experience will encourage other men and women caring for a loved one with ALS to face the challenges that come their way.