Do you ever feel tired at the end of the day? Most of us do. Be it work, or family, or just the running around of daily life, most of us have had the feeling of wondering how we managed to squeeze it all in today, and how we’ll possibly do it all again tomorrow.
Now, imagine that on top of everything you already have to do, you’ve got another whole job on top of that. One that requires your complete attention; one that can be physically and emotionally taxing; one that it seems at times that only you can do. And so it is with family caregivers across the country.
November is National Family Caregivers Month, a time to recognize and honor family caregivers for all they do. It is also a fitting time to explore the role our ALS family caregivers play in the role of people with ALS, and how we as a community can help make their lives a little bit easier.
Just like the people they care for, family caregivers come in all shapes, sizes, and ages. They come from all walks of life. A recent community survey from the ALS Association found that nearly two-thirds of caregivers reported that they provide more than 30 of hours of care per week. More than 60 percent of these caregivers work outside the home, and more than one-third of them work more than 30 hours per week.
Here in our community, Leslie serves as a caregiver for her mom June, who was diagnosed with ALS in August 2018. After June’s diagnosis, they decided they needed to live under the same roof so June can receive the care that she needs.
“Leslie is my only child and we are very close,” June says. “I am able to live with her and her family. This allows me to be close to my grandchildren while Leslie helps me with my everyday care.”
Leslie is fortunate that her job allows her the flexibility to work from home and at hours outside the normal workday to help June with the different care required for ALS. “I used to be a teacher and would have to take an entire day off in order to go to the doctor with (mom),” Leslie says. “Now I can go to the doctor and afterwards come home and continue to work.”
Leslie is thankful to have other family members who are able to help her take care of her mom. “My husband is a big help and will help mom whenever I can’t,” she says. “My aunt is also very helpful and is there for my mom as well. My children will step in when they have the opportunity as well as my friends when I need them.”
Leslie’s use of her family and friend network illustrates an important trait for family caregivers: a wiliness to ask for, and accept, help. In their desire to try and “do it all,” caregivers must be conscious of spreading themselves too thin and running the risk of burnout or depression.
“I want her to be able to relax more and not worry so much,” June says. “She’s overwhelmed and I need her to know that she’s doing fine and to relax. This is a difficult time and every day is a challenge.”
Caregivers can also fall into the trap of thinking that they are the only one who can or should fulfill the caregiver role. This is unrealistic. A family caregiver must not only be willing to accept help when it is offered, they need to be willing to ask for help when it is needed. In most cases, those around you are willing to help if asked. As a caregiver, prepare a “wish list” so that when someone offers to help you have something concrete to ask of them.
Still, even with a support network, it can be hard to keep track of everything that needs to be done, or has been done. “I’m a list maker and at times I have two or three lists. I have things written in notes on my phone, a list in my monthly planner as well as an ongoing list taped to the inside of my cabinet,” Leslie says. “I also cross things off as I go, as it helps me feel like I’ve accomplished more when I do that.”
Even with that sense of accomplishment, every caregiver faces the need to find time for themselves. The need is physical, but emotional as well. When caring for a loved one, the pull of wanting to do just one, or two, or three more things is natural. But every caregiver should make sure they are taking time for themselves as well. This is in no way selfish, and in fact by looking out for their physical and emotional health caregivers are able to provide better care.
“ALS is a daily journey,” June says. “Some days are good and some are not so good. You really need to count and rely on your caregiver every day.”
Part of the services offered by our Chapter includes caregiver relief services for family caregivers for people with ALS. These services allow caregivers the time they need to attend to their needs, socialize, and relax. If you are not already, please register with our chapter to find out what services are available to you and your family.
Leslie makes a point to make time for herself when she can, even if it is just for short periods to recharge her batteries. “I get massages now and then and it is a great way for me to relax. I will also go shopping here and there,” she says. “Sometimes I run into a store for only 20 minutes, but even that helps take my mind off things.”
If you know of someone who is acting as caregiver to a person with ALS, or is acting as a caregiver in some other situation, take the time this month to say thank you, and if possible offer to help them in any way you can. Even if they appear to “okay,” understand that they very well be carrying a load heavier than you—or even they—can imagine some days.
“I guess I wish people knew how mentally challenging it is to see your loved one suffer,” says Leslie about her role as caregiver. “You feel helpless and you want to make things better for them, but you can’t. So, you just do what you can and take it day-by-day.”
November is Family Caregivers Month, but there is never a wrong time acknowledge and support the caregivers in our community. As we approach Thanksgiving, take a moment to give thanks for the caregivers who make life better for people with ALS.