In recognition of National Wellness Month, we are exploring the many facets of wellness and the ALS community, shining a spotlight on the act of practicing healthy habits to attain better physical and mental health outcomes.
In some way, shape or form, we are all list people. Some people are of the pen and paper list variety, others have taken to keeping notes on their phone or online calendar. And even those who would claim to not keep lists probably have an idea of some “to dos” they keep in their head. We all have things to do, and we all have to keep some sort of track of them.
For ALS caregivers, there are likely lists upon lists. Regrettably, we know that far too often the last thing on those lists is themselves. In a recent ALS Focus survey on caregiver needs, 56 percent of ALS caregiver respondents reported they worry about the lack of time to relax or engage in self-care, and 35 percent cited decreased participation in hobbies or leisure activities as one of their top caregiving concerns.
So, in the spirit of keeping a list, here’s a list of ALS caregiver “to dos” for their own self-care and wellness:
Reflect on your own needs.
It is possible or even likely that as a caregiver, you have taken to investing much of your time thinking about what the person living with ALS needs. This is important, but so are your needs. Consider the areas you need to feel balanced and which you’re struggling with.
- Are there things you want or need to do for yourself but struggle finding the time? Identify them so you can find a way to act on them.
- What are signs you’re feeling stressed or overwhelmed? Learn to recognize those signs so you can understand when you need to take time to focus on your needs.
- How do you like to relax? Think about the things you enjoy that you have been neglecting so when you do find time for yourself, you are ready to enjoy them again.
Take care of yourself.
It might seem obvious, but if you are feeling exhausted or out of sorts, you will not be able to give your best to the person you are caring for, either physically or emotionally. As many caregivers have noted, this is a marathon, not a sprint.
- Be mindful of YOUR nutrition needs as a caregiver. While we all benefit from a healthy diet, for caregivers it can help give you the energy you need to tackle all your daily tasks.
- Be sure you are getting enough sleep. We all need different amounts of sleep to function at our best but know what your needs are and be sure you are getting enough rest. If you are having trouble getting to sleep after long or hectic days, try implementing a predictable and regular bedtime routine.
- Find time for regular exercise. You may be tired, but the old adage is true: you’ll have more energy in the long-term if you make time in your schedule for regular exercise. Just 30 minutes of walking a day has been shown to improve overall health and energy levels.
Make time for yourself.
We’ve told you quite a few things to try and do to manage your health and wellness as a caregiver, but you also need to make time for the things you enjoy—be it yoga, gardening, reading, or binge-watching reality TV.
- By engaging in a hobby or preferred leisure activity, you’ll stay connected to yourself and your sense of self beyond your role as caregiver.
- Much like exercise, spending time on something you enjoy will give you more energy for your role as a caregiver.
- Include making time for the other people that are important to you. Getting coffee or a meal with friends and family to catch up on their lives will give you a mental break and remind you of the world beyond caregiving.
Find and use a support structure.
You can’t do it all alone, and to take care of yourself, you are going to need others to help take care of your loved one. Allowing others to support you will help contribute to your overall wellness:
- Ask for help when you need it. There are likely other family and friends who will be willing to pitch in and help. If you are struggling to find someone, The ALS Association Care Connection program can help you develop a network of helpers.
- Explore respite care programs or services. Many ALS Association chapters offer respite care services, or there may be other non-profit organizations in your area that have respite care programs.
- Consider joining a support group. While not for everyone, support groups can provide a safe place to share some of your challenges, successes, hopes or fears with others who share common experiences. Once again, your local ALS Association chapter may have a support group that fits your needs.
Give yourself some grace.
You know it better than most: being a caregiver can be hard. And you are not going to be at your best every hour of every day. And that’s okay. Recognize the important job you are doing and give yourself credit for doing it as well as you can.
- Don’t berate yourself if or when you fall short. We are all human, and we all make mistakes. Remembering this is a marathon and not a sprint, you’ll have a chance to be better in the future.
- Let yourself laugh, or cry, when you need to. Holding onto or ignoring your emotions can lead to burnout or depression. Allow yourself the space to chuckle at the absurdity of what life throws at you or to feel the sadness that ALS can bring.
- And finally, don’t forget to celebrate your successes. Even if it is as simple as saying to yourself “I made a difference for the person I am caring for today.