Dear Family Advisor
I'm beyond caregiver burnout!
Last updated: Oct 04, 2011
My mother has severe Alzheimer's. My sister helps out financially, but Mom lives with me. I have a home health aide, but Mom just screams nonstop and won't let anyone touch her but me. How can I go on?
I'm so sorry it's come to this. It's heartbreaking for you and for your mom.
You're facing the darkest of roads -- so what I'm going to suggest isn't mean or cold. You love your mom. You're committed to her care, and you're doing all you can. But now it's time to turn off some of your emotions. If you don't, you'll make yourself sick. Sadly, all you can do will never be enough. Your mom feels lost and alone because of the disease, and you can't take away that fear.
I realize that she may not be in full control of her faculties, but perhaps your mom is a bit like mine was and is using her situation to manipulate you into doing what she wants, without being able to understand when it becomes too much for you. It's time to reign in your thoughts and steady yourself. When we corner ourselves and refuse to offer our spirits any options (to quit, to take a break, to let go for even just a little bit), we set up our bodies and spirits to rebel. That rebellion may come in the form of an illness, accident, or depression -- and when it hits you, it'll be bad.
If you really feel like you've slammed into the caregiver-burnout wall at full speed, then quit. For five minutes, quit being a caregiver. Quit listening. Quit caring for everybody else. You may be able to manage this for a few minutes or for a few hours, but you need to let caregiving go completely.
I remember this day in my own caregiving journey very well. My mother would have latched onto my hip if I'd let her. Her demands were relentless, and my nerves were beyond frazzled. But I realized what I had to do. I had to feed her, provide for her, give her the medications she needed, make sure she got all the medical care she needed, but do it in a way that was less emotional. I learned to stay inside my own head and heart, and any time I felt her pulling on me in an unhealthy and uncontrollable way, I'd tell myself, "I've done all I can do." Then I went on autopilot, if I might put it that way. This numbness kept my heart (and sanity) from breaking.
If you have a care aid you can trust, force yourself to get away -- even if just to your bedroom. It's hard, after such intense caregiving, to figure out what to do with yourself when you're not in that role, so be prepared for some boredom, lack of engagement, and floundering. Don't worry about that; just make yourself leave your mom's care for a little while each day. Take a walk. Pull weeds. Flip through an entire magazine. Clean out a closet, or take an extra-long shower. Call an old friend and don't let yourself talk about your mom for more than five minutes. Or just light a candle and watch the flame. Get back to yourself. You're not who you once were, but you're more than just your mother's caregiver.
When I was in your shoes, I stopped listening to everything my mom had to say, meaning I stopped trying to reason with her or argue with her. I stopped answering her incessant questions, because my answers didn't comfort her and they got on my nerves. Try some of these tactics instead: When you do your mom's chores (change the sheets, clean up her room), put on your iPod and do it as if you were the maid, humming along to the music. Smile and act as if you're being paid to care for her -- and paid well. When she tries to push your emotional buttons, put down what you're doing and leave the room.
I also had a few motivating tricks for myself, such as a treat of dark chocolate when I'd handled a tough situation, or gold stars (yes, really) that I'd put on my hand or hers whenever one of us was sweet and changed how we were behaving. I had the best-weeded mailbox area you've ever seen, because I'd let myself avoid going back inside by doing a bit a weeding. I turned it into a game: How can Carol sneak away for five minutes?
You'll see -- just five minutes can make a world of difference. Then when you step back into caregiving, do it because it's a choice. It may not be a great or a first choice, but it's a choice.
One more thing: If you feel an emotion bubble up -- rage, sorrow, panic -- let it. You've been stuffing down everything you can, but you need to feel it. Don't be afraid it will consume you. Slam a door. Cry and scream and moan. Write yourself a letter and tell yourself what an amazing person you are, and how courageous you are for even trying. Honor your body and your heart by recognizing what you're going through. Whatever you're feeling, it isn't bad. It's natural. Acknowledging it is downright necessary, and it's the only way you'll be able to go on.
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