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“If you don’t take care of yourself—no matter how much you love and are willing to give—there’s only so much you can do without taking respite and accepting support. As guilty as you feel, do it anyway. When you come back to your caregiver role, you’ll be refreshed, replenished, and a much better caregiver.”
— Laura
— Laura
“Caregiving is so complicated. It is a hard journey, but it's also a complete expression of pure love.”
— Jodi
— Jodi
“It'll wear you down, when you're doing everything and you can't get a minute of peace. You can't do it all yourself. If you're not healthy, you're not going to be able to take care of your loved one. That is said over and over again at our support group: we have to take care of ourselves. You’ve got to take those breaks.
I went through a lot of health issues and I definitely think they were caused by all the stress that I was under. I spoke with a counselor who prescribed some medication and my husband will tell you that it has made a world of difference for me. I can stay calm and not get upset. I'm not one who likes to take a lot of medicine, but I was just so anxious and depressed and I needed something to help. I'm a much happier person. I don't feel any different, but I don't feel the anxiety that I felt before.”
— Karen
I went through a lot of health issues and I definitely think they were caused by all the stress that I was under. I spoke with a counselor who prescribed some medication and my husband will tell you that it has made a world of difference for me. I can stay calm and not get upset. I'm not one who likes to take a lot of medicine, but I was just so anxious and depressed and I needed something to help. I'm a much happier person. I don't feel any different, but I don't feel the anxiety that I felt before.”
— Karen
“I know it's scary and I know you don't know how you're going to do it and don't even know what you're going to be asked to do, but you’ve got this. You're not alone. There's a lot of support and a lot of people that will help you.
If you doubt yourself at any point, or you don't know what to do, trust yourself. Trust your intuition. Be confident that you’re doing the best that you can with what you have. If you're doing the best you can, you're enough.
Because the journey can be so different for people, you may end up worrying about things you never had to and using that energy on things that you maybe shouldn't have. I would just tell people to focus on one day at a time, because I don't know that you can plan for ALS. I could only take the attitude that I'm going to do the very best I can and when I look back at this, I'm going to forgive myself because I did the best that I could.”
— Allison
If you doubt yourself at any point, or you don't know what to do, trust yourself. Trust your intuition. Be confident that you’re doing the best that you can with what you have. If you're doing the best you can, you're enough.
Because the journey can be so different for people, you may end up worrying about things you never had to and using that energy on things that you maybe shouldn't have. I would just tell people to focus on one day at a time, because I don't know that you can plan for ALS. I could only take the attitude that I'm going to do the very best I can and when I look back at this, I'm going to forgive myself because I did the best that I could.”
— Allison
