Thoughts Caregivers are Reluctant to Admit, Even to Themselves

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When the better in "for better or worse" seems terrifyingly far away, how can you limit the time you spend focusing on the worse?

"You're such an amazing person—I could never do what you do! I admire you so much."

As a caregiver, you might hear similar comments. Sometimes you might appreciate the compliment and acknowledge the recognition. Other times, you might be profoundly relieved that no one can read your mind and discover your less-than-admirable thoughts. Our home health aides and private-duty nurses at Partners in Care, an affiliate of the Visiting Nurse Service of New York, encounter this mental struggle all the time.

The longer you spend as a caregiver, the more likely you are to experience emotions and thoughts that you're reluctant to admit, even to yourself. Your friends and family are having a great time with their spouses — and it isn't the travel or the adventures you envy. They have conversations. They have dinner together. They have sex. You, on the other hand, spend your days with someone who might not know which day it is, can't lift a fork or roll over, or has morphed into a violent, nasty stranger. You're lonely, you're resentful, you're terrified that this won't end any time soon and you're overwhelmed with guilt when you realize there's pretty much only one way it will end.

How do you get out of the vicious cycle? Take a cue from the mantra that school kids learn during fire-safety week: Stop, drop and roll.

Stop: When you start thinking, "why did this happen" or "if only," interrupt yourself. No matter how obsessively you contemplate it, you will never find a satisfactory answer to, "Why us?" If you can't give your thoughts a rest, set a timer for five minutes. When it goes off, tell yourself to stop worrying, then set the timer for another five minutes. This time, find one positive thing in your life. If you can't think of anything good right now, simply focus on breathing calmly and remind yourself that even though it's pouring rain, for example, at least you won't have to water the garden.

Drop: Are you keeping up a façade? Drop it. If you pretend to family and friends that you're doing well and everything's okay, you're not going to get the support you need. You're in a situation where the person you married is both wonderfully familiar yet drastically different. You're losing the person you love, and it's important for your mental and physical health that you maintain relationships with others. If you can't get out easily, pick up the phone or stay in contact via Skype, Facebook or online chat services like AIM.

Roll: Your life will continue to change as your loved one's illness progresses. In the same way that a coach teaches athletes to fall properly to minimize injury, seek out therapists, mentors or friends who have been through similar situations and can help you develop the flexibility you'll need to roll with life's punches and stay mentally and physically healthy.

Renata Gelman, RN, B.S.N., is assistant director of clinical services at Partners in Care, an affiliate of the Visiting Nurse Service of New York (VNSNY). In this role, she coordinates patient care and manages a multi-disciplinary team of field nursing and home health care professionals in the clinical area of a VNSNY’s private care division.

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6 Comments

Good article. I don't feel guilty at all about the thoughts I have because they are reality. I know not to express them to the person I'm caring for b/c that would be hurtful and cold but I'm glad to feel no guilt. Why should I feel bad about knowing that as an unmarried adult with no children I have no caregiver bred for me so I have to be more reality based than my mom who has a bred caregiver. I do have to admit that I used to get annoyed when people would act like I'm some friggin saint. I would tell them straight up "No, I lost my job at the same time mom's health declined so it was coincidence. not a Mother Theresa moment". If I hadn't lost my good paying job with good benefits, she'd be in a facility" because who in their right mind (esp an unmarried adult supporting herself) would give up financial security?
OK. I set the timer for 5 minutes to limit my worrying. And then I set it for another 5 minutes to think of something good. Hey, if I had 10 consecutive free minutes, I'd read a chapter in a good mystery novel. Total escape is better than disciplined thought anyday! :D

Other than that, good article!
It is hard to see a loved one slowly decrease in front of you. I have a friend who recently lost a loved one. She had a hard time coping with the lost. She became very distant with a lot of people. Her family and friend would try and encourage her to talk to someone about the loss. She would not talk about it for a while. She has recently started opening up about the loss after a few years. I hope that she will be able to find peace again soon.