Category: For Caregivers

People living with ALS require increasing levels of care as their disease progresses. Most of the time, responsibility for personal care is taken on by caregivers such as family and friends.

Caring for a person with ALS is an important but demanding role. It can be stressful and emotionally exhausting. Caregivers may be at risk for stress-related health problems, burnout, and compassion fatigue, and can be at increased risk when they experience a lack of support, isolation, or financial difficulties. There are ways to help reduce these risks.

It is important for caregivers to feel well supported and when possible, take time for self-care.

For someone caring for a loved one living with ALS

Looking after a family member or close friend who is living with ALS is a precious act of love and devotion. It is often a full-time commitment that demands a lot of physical and emotional energy, making it challenging to maintain your own health and well-being. If you know someone in this role, the holiday season is a perfect time to say, “here’s something to help take care of you.”

Many of you from our ALS caregiving community recently shared some gift ideas you thought would be most appreciated by others providing care for a loved one. Keep in mind that it may be hard for caregivers to ask for what they need. They often prioritize the needs of their loved one over their own. They can even feel guilty attending to their own needs, putting self-care at the bottom of their list.

Don’t be afraid to reach out and spread your love around! If some of the suggestions below seem like a good idea, chances are, they will be received with gratitude and appreciation.

Here are some gift ideas to offer a caregiver you care about:

Time for yourself

The number one request from caregivers was some time to re-charge. As the disease progresses, someone living with ALS requires an increasing level of support managing even the most basic daily tasks, such as eating, getting dressed, and showering. Giving a caregiver the time to take a break allows them to return to the role feeling re-energized and better able to cope. A day off might provide the respite someone needs, but even giving the gift of a short break can be helpful.

Debbie Henderson appreciated a few hours away from her role as caregiver so that she could go shopping or out for a meal with a friend. “I also used the time off to attend an ALS support group for caregivers. I got so much from the others in the group. It picked me up when I was feeling down.”

Relaxation for your body

Caring for someone with ALS is physically taxing. As a loved one gradually loses the ability to move, the physical demands of the caregiver role increase. Dealing with equipment like wheelchairs and specialized assistive devices for personal care can be hard on the muscles.

Many of you emphasized the importance of physical therapies such as massage, reiki, float pods, spa treatments like manicures and pedicures to help soothe sore muscles and rejuvenate the body. Offering a gift certificate for any of these services can provide temporary relief from pain, stiffness, or fatigue.

Jessica Gustafson also included yoga as a way to de-stress. “I had the gift of a yoga class once a week, coupled with a reliable person to come and stay with my hubby. I think it got me through some of the darkest times and also, it felt so good for my tired and stressed body. Super lovely and thoughtful idea.”

Visits for your loved one

ALS is such a devastating disease. Many people become uncomfortable with the physical effects of the disease when it happens to someone they know, even when it is a close friend or relative. When people turn away, it can cause tremendous pain.

Offering a friendly visit can be a wonderful gift for the caregiver and the person living with ALS. “My dad was such a social and friendly guy,” says Andrea Fairweather. “When he developed ALS, people stopped visiting. It broke my heart that people didn’t know what to say, so they stayed away completely. It would have been so much easier for me with regular visitors.”

If you’re not sure whether a visit would be helpful or not, you can always ask. Caregivers will let you know if they prefer privacy, or if it is too much for the person being cared for to receive a visit on any given day, or at any time during the progression of the disease.

Taking care of chores

Finally, think of a chore you can take on that might relieve some of the work of caregiving. It doesn’t have to be something big. A gift card offering to do the dishes, mow the lawn, clean the house, pick up groceries, walk the dog, or cook a meal is something many caregivers would appreciate.

Use your imagination. The possibilities are endless and the potential for making someone feel appreciated when they are giving so much of themselves is a gift in itself!

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.