Caring for Your Caregiver |
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Many caregivers feel so overwhelmed by caregiving and juggling the demands of day-to-day life that they don’t eat well, sleep enough, get exercise, see friends, or do anything other than work and provide care.
This can lead to feelings of anger and resentment and can put an emotional strain on your relationship, no matter how much you love each other. You can help your caregiver find time to recharge by coordinating and/or supporting respite care, which is when family, friends, or professional caregivers fill in to provide care or just spend time with you. |
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It is important to give your caregiver permission to take this personal time. It may sound like a simple thing, but many caregivers feel guilty for leaving their loved one’s side and doing something for themselves.
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Although you may feel angry and frustrated at times, try not to take your frustrations out on your caregiver. While it is okay to feel angry, it is not okay to be mean. Remember that this is not easy for either of you.
There are many online calendars and tools that can help organize respite care and assistance. Lotsa Helping Hands, Caring Bridge, and Google Calendars are a few options. Learn more about how you can organize and ask for help. You and/or your caregiver may also benefit from attending in-person or virtual ALS support groups, where you can connect with others who can understand what you are experiencing on a daily basis. There are support groups just for caregivers and others just for people living with ALS. |
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Be Aware of How You Are Treating Others
Though you may feel sad, angry, frustrated, overwhelmed, and helpless at times, it is not okay to lash out at others. Try instead to share how you’re feeling and find constructive ways to communicate with your caregivers and loved ones.
“Don’t be an asshole,” says Joel Goldhirsh, who adjusted his attitude after realizing he had been making life unpleasant for those around him.
“As the person living with ALS,” he says, “you have to realize that it’s not all about you. There are other people that are affected by the disease, especially a spouse or partner. Looking out for their well-being is just as important as thinking about your own.”
You have the ability to be kind to others, which can improve quality of life for everyone. You can also help your caregiver recharge by understanding their needs and accepting outside help like respite care.
“Don’t be an asshole,” says Joel Goldhirsh, who adjusted his attitude after realizing he had been making life unpleasant for those around him.
“As the person living with ALS,” he says, “you have to realize that it’s not all about you. There are other people that are affected by the disease, especially a spouse or partner. Looking out for their well-being is just as important as thinking about your own.”
You have the ability to be kind to others, which can improve quality of life for everyone. You can also help your caregiver recharge by understanding their needs and accepting outside help like respite care.
If you are feeling overwhelmed by powerful emotions or just feel like you could use additional support, you can visit our ALS Mental Health page to learn how to improve your mental, emotional, social, and physical well-being.
