I suspect that many caregivers live in a state of suspended animation, as if their own life is on hold. I’ve had this feeling a few times in the past two years — I turn 60 this year, and I know I should be planning my retirement, but it doesn’t seem appropriate or feasible. I keep renewing the lease on my apartment thinking – how permanent is this living arrangement? How long will my parents need me? It’s impossible to know.
Being “on hold” doesn’t stop with the big questions, either. I often grab a bite to eat after I’ve made my parents a nutritious, warm lunch. I “settle” for a bowl of soup and some crackers. (I think parents do this, too… feed the children first, then grab something quick for themselves.) I buy Mom and Dad an expensive piece of salmon to make them a nice supper, and then grab a frozen pizza for myself. I encourage Mom to do exercises for her arthritic knees, and then skip my own exercise routine because I’m too tired. There’s a pattern here, and it’s not a healthy one.
After a year of giving in ways I had never given, dealing with exhausting and difficult emotions, feeling as if I were drowning in a sea of medical ignorance and misinformation, I realized that if I didn’t take better care of myself, I wouldn’t be able to go the distance. Still, I felt guilty about making time for myself. It didn’t feel right to take an hour in the morning for yoga and meditation, or to soak in my bathtub at night, enjoying the sparkle of candlelight on bath bubbles….
It’s called caregiver martyr syndrome.
You see? We’re not alone. Lots of caregivers give in to guilt, exhaustion, a sense of co-dependency and the pressure created by the commitment we’ve made in our hearts. Lots of caregivers put themselves second, or last, or off the grid altogether. Many people have recognized the problem, brought awareness to it, and suggested solutions. It’s important to know this and act on it, because if you don’t, you will end up as another sorry statistic. Which is just wrong, wrong, wrong. Caregivers are angels, and angels shouldn’t end up on the trash heap.
Duh. Ya think?
What finally helped me change my behaviour was seeing it mirrored in my parents. Whenever I was tired and out of sorts, they behaved badly. It was as if they were purposefully testing me when they knew I couldn’t handle it. (Of course they weren’t but that’s how it felt.) On the other hand, when I was up and bubbly and bouncing around with happy energy, they responded positively, and we all had a cheerful day.
I know this sounds so obvious, but in the chaos of caregiving and with everything else on your mind, you may have missed it. People with dementia or Alzheimer’s have no short-term memory, but their sensory memory is alive and well. They can feel your energy, whether it’s good or bad, and will take their cue from you, their caregiver. If you are happy and full of vitality, chances are they will respond in same. If you’re exhausted and shut down and resentful, they might, in unconscious empathy, react with similar behaviour.
That’s why it makes sense, for everyone involved, for a caregiver to take really, really good care of himself or herself. You need to make and take the time you need to relax, replenish, restore and revive. Yoga stretches and meditation, for me, makes a huge difference. It helps calm, center and balance my body and mind. I put myself to bed early and make sure I get lots of sleep. I eat chocolate at night, as a reward for getting through the day. I turn off my worries when I get home, knowing that stress is lethal. I reach out for emotional support when I feel close to collapse, either with good friends, my siblings, or through several trusted online support groups.
And, recognizing the martyr in myself (my mother taught me well), I do it for my parents more than myself. This is very much a fluid situation, always changing. Every good day with my parents is something to be grateful for… because there will be days (and nights) ahead when it may be increasingly difficult to find time for myself. I need to take care of myself now, so that I’m healthy and hale when they need me most. That works for me. My philosophy these days is very much “whatever works.”
What works for you? Do you have a strategy for self care or a story to share that other caregivers might benefit from? I would love to hear from you. We’re all in this together.
“Attract what you expect, reflect what you desire, become what you respect,
mirror what you admire.”
– Unknown
Unforgettable 
Hmmmm. Yes, but I don’t buy the label “martyr syndrome.” I think things get out of balance because people don’t have the right skills and/or support. I broke down at one point from exhaustion, frustration, etc. but not because I was or am a “martyr.” I searched and asked for help (as do many others); it wasn’t forthcoming/or was unavailable (as many others also find).
I see your point and completely agree with self care, but I think care partners have enough on their plates without the additional guilt of being called martyrs, which to me has a definite negative connotation. Further, I don’t buy a lot of what FitzPatrick says in her piece. As an example: “Caregivers often experience feelings of anger, resentment, guilt, frustration, sadness and loneliness.” Well, yes. EVERYBODY experiences such feelings.
Caring for someone who lives with dementia is just like the rest of life: a rollercoaster. I think we need to ease up on the labels and judgments while not giving up on ways to make it easier on everybody. My two cents worth 🙂
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Thank you, Susan. I admire your rejection of labels and your emphasis on embracing the positive; it’s true that everybody experiences these feelings; we’re not trained to deal with them generally, let alone in the role of caregiving. In the corporate world, I dealt with all this and more, but always with the knowledge that I could (and did) walk away if it got really bad.
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I guess we can always walk away, but the stakes are much much higher. And some people do choose to walk away, sometimes to save themselves, sometimes for less honourable reasons 🙂
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What a powerful website! Thank you for sharing your story. I saw your message on the AlzAuthors blog and thought I’d take a peek. I’m the author of Motherhood: Lost and Found, a memoir of my own mother’s slide into Alzheimer’s as I was trying to become a mother. Losing our parents this way definitely hits hard. I was especially knocked off center when my mother’s personality began to change because I had relied on her so much. Your website will be a gift to many. I look forward to keeping up with it!
Best wishes on the journey!
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