My mom burst into tears in the middle of a restaurant dinner and instead of asking, “What’s wrong,” I was embarrassed. I thought, “Why can’t she pull herself together?” My mom had a disease called Huntington’s disease, which renders its victims incapable of acting what many call “normal.”
If you take care of someone with a disease that causes dementia, you are not living a “normal” life and caregiving is therefore doubly challenging. You may think, “He’s doing this just to drive me crazy,” when in reality the repetitive questions or unpredictable behavior are not malicious. You’ve known this person for years and now you are their caregiver—helping with daily tasks, while getting to know someone who is actually a very different new person.
Think of it this way: Do you ever get really frustrated at a vending machine when it won’t take your dollar bill? You straighten out the bill, insert it again, and it just keeps spitting it back, even though the bill looks fine? Your loved one may also look fine on the outside, but their brain is not working the way it used to. You need to find a new way of being with him or her, while you simultaneously figure out how to take care of yourself.
I know you want to scream. Some days you even yell at your loved one, but that only adds to your stress. This is why you must find support—a person or a group which allows you space to say all the things you simply can not say directly to your loved one. Being supported along your caregiving journey is the first step in being a S.A.N.E. caregiver—Supported, Appreciated, Not guilty and Energized. Start by finding support for yourself:
- Educate yourself about the disease so you know what to expect.
- Let off steam with a trusted friend.
- Set aside a half-hour a day to do something just for you.
- Join a support group (or start one).
- Find ways to laugh every day.
You know you would do anything to help out someone in your shoes. It’s time to take that same spirit of helpfulness and turn it inwards. Ask for help and let others support you.