Caregiving for Caregivers

August 29, 2011 · 8 comments

Nine months ago my wife was diagnosed with breast cancer and several days later she had the lump successfully removed. Burned into my memory is the moment the doctor told us the news. My first thought and fear was, ‘what if I lose her?’. As her husband, with very protective tendencies, an emotional odyssey of strong and different feelings began.

At the same time my brother who lives on the east coast worsened. He was diagnosed with schizophrenia over thirty years ago. During the last ten years, as his guardian/caregiver (the rest of our family has passed), I was able to set him up in an apartment with programs, daytime help and a dog. He was able to live with restrictions; yet independently. Last fall his condition worsened and my role as a distant caregiver changed. He was diagnosed with a progressive brain disease. I was now dealing with new and more frequently indifferent medical help. This was a new level of stress. It felt like a gorilla on my back. My dominant emotions regarding care giving people I love became worry, fear and doubt.

As a Caregiver here are a few words of encouragement:

  1. You have an incredibly difficult and often unrecognized responsibility. People will come up to you and ask how so and so is doing, without any awareness that your eyes are red and strong aspirin is not stopping your headache.
  2. It takes tremendous emotional stamina to help an ill family member or loved one.
  3. Your ability to be a successful caregiver depends on how you learn to care for yourself. Here are some tips:
  • You deserve to know you have respect and honor that is often not recognized. Don’t expect to hear it, but let me tell you again. Being a caregiver earns you dignity and self-respect.
  • You don’t have to always answer friends and family when they ask questions about the person who is ill. I know a man who compulsively believes he has to give an updated biography about his wife, every time he is asked. Sometimes dredging it up feels miserable. I actually rehearsed with my wife some responses that would get me out of the “answer muck” in a respectful way. Here are a few responses to the question: “Thank you for asking and showing your kind support. Now is not a good time to talk, but again thanks for asking.” “Let’s talk about the illness later. Thanks for the concern and good feelings you send our way.”
  • Care giving can affect your mind, body and spirit. Take time out to relax and restore all of you. Listen to music, play a game or sport, get your own counseling to just talk out your worry, fear and doubt. You need and deserve support!
  • Don’t be embarrassed to get help. You have earned it. So many people say they would never go for counseling. Why not? Counseling can really help assuage your worries and fears. Or at least not let them grow and dominate you.
  • There are books for care givers. Read a few.
  • Laughing brings pleasure to the brain, releases stress and takes you away from thinking, thinking, thinking about the illness.
  • Make a new friend, hike in nature or play cards. Tell your closest friends you want to just hang out and talk about other things. All research says social interaction (in person not on line), helps eat away at the alienation that comes from care giving.
  • Learn how to be honest and speak from the heart with the person you are care giving . They are vulnerable and very able to hear your reality. Try to deepen your relationship through a deliberate attempt to improve communication.
  • Choose who you spend time with. I know someone who has been with his wife for years during her battle with cancer. He told me he chooses who he will spend time with, who he will talk with, and tries to bring less stress into his life so he can be there for his wife. Make a list of people in your life and minimize spending time with those people who don’t bring you benefit, kindness, or humility.
Care giving can be and often is very difficult. You are taking responsibility and doing your best to help someone who is fighting for their health. The stronger you are for them, the more effective your care giving. Take care of yourself. It will make a big difference.

{ 8 comments… read them below or add one }

Karen Weinberger August 29, 2011 at 3:49 pm

Hi Jeffrey,
This is a great article. You really cut to the chase. I liked your assertion that caregivers also need respect and care and I liked your “tip” about deepening the relationship between caregiver and the one cared for through honest, from the heart communication. Having been in both positions, I can attest that even when flat on your back in a hospital bed, the person being cared for can often also be caring, loving, kind and patient. It’s good for caregivers to not take that away from the person they are caring for. Interesting the Care-giver and Care-taker are one and the same.

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Nelson Pinto August 29, 2011 at 6:48 pm

Hi Brother Jeffrey! Your article is amazing, really reflects the person you are…we really have to take that expresso, that you speak in the other day on the email :) so we can get know more of each other :). You are a true Rôle Model, a true FMS Warrior, is not measure by his technique, but yes by his Heart, his giving, the love that share, you are that MAN! With all much love and in brotherhood, from your portuguese family, FaRang 4EVER! Nelson & Vera!

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donna bringenberg September 3, 2011 at 12:32 am

So much truth in this article. Often what is viewed as a catastrophe can also be a blessing or a benefit…AKA a benestrophe. We walk this path with hearts quivering being splayed open for the divine to enter in. Thank you for putting this down in a blog. I hope others take the opportunity to read and reflect and nurture themselves.

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Sharon Osvald September 17, 2011 at 2:01 am

Hello Jeffrey, I am recently recovering from a very tiring year where my mother developed delirium and vascular dementia. The events were startling and sudden. After trying to have her live in our home with drastic results (she was psychotic at the time from delirium), my mom is now settling into a nearby nursing home…but the year of getting her there was an exhausting one. Thankfully our family was very supportive.
Suprisingly however, one of the most discouraging things was the negative, unknowledgeable and judgemental comments from the people around me. Many really seemed to think I was taking it all too hard. Why did I take a month’s leave of absence?… I mean after all she is 82, what did I expect? I felt I was not allowed to grieve and sometimes I still am angry that she is so forgotten and dismissed. So when I read your comment: “Make a list of people in your life and minimize spending time with those people who don’t bring you benefit, kindness, or humility.” I laughed out loud. There really ARE people who I have blacklisted for this very reason. Instead I surround myself with people who build me up and try to do the same myself. Well said. Thank you.

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Mark Zanger September 19, 2011 at 2:30 am

My experience in caregiving is some, especially in one’s own family, can be very negative, and also that some people just disappear. This doesn’t mean they are bad people, but they don’t understand. One of my better friends, who remains one, told me out in front — “I have nothing to relate that to.” Actually he did and does, but starting that way was better than pretending or disappearing.

One tip I have would be to refuse to be weird. It is very natural when hit with a catastrophe, your own or someone else’s that becomes one for you, too — to resent everyone else in the world who doesn’t have what you have or cares for someone similar to your loved one. After a while I learned to force myself to ask about (in my case) other people’s children who were going on to college and careers. I would respond to questions, then I would say. “Tell me something good. What’s up with X?”

It’s a spiritual exercise, like going to the back of the longest line if you want to be less Type-A.

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Julie V. November 14, 2011 at 3:04 am

This is so concisely written and even more respectfully said. When we as friends and family ask about the health of a loved one, despite our best intentions, we often forget the feelings and emotional health of the caregivers themselves. Thanks for the gentle and compassionate reminder.
Julie (GroundSpring)

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Jagoda January 18, 2013 at 2:15 am

Thank you for this kindness. My family is currently caring for two quite elderly parents, and your words are a balm. I shared this post on FB knowing several of my co-caretakers will have a chance to read it too.

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susan scott January 22, 2013 at 5:25 pm

This was a lovely post Jeffrey, thank you for sharing it with us. The comments from others were also warm and human.

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