Signs

A Prayer for the Caregiver
by Bruce McIntyre

Unknown and often unnoticed, you are a hero nonetheless.
For your love, sacrificial, is God at his best.
You walk by faith in the darkness of the great unknown,
And your courage, even in weakness, gives life to your beloved.
You hold shaking hands and provide the ultimate care:
Your presence, the knowing, that you are simply there.
You rise to face the giant of disease and despair,
It is your finest hour, though you may be unaware.
You are resilient, amazing, and beauty unexcelled,
You are the caregiver and you have done well!

 

Several years ago I was on vacation in North Carolina with my husband, kids, parents and my aunt and her boyfriend.  One night after dinner we went around the table and asked each other the questions that James Lipton asks celebrities at the end of the TV show, Inside The Actor’s Studio.  The last question he asks is, “If  heaven exists, what would you like to hear God say when you arrive at the pearly gates?”  My answer to that question was that I’d like to hear the words, “You did a good job.”  I’ve always tried to do a good job, whether it was raising my kids, being productive at work, or just by being kind to everyone.  I’ve always tried to be a good person and do the right thing.

I’m not a religious person.  I’ve never had use for organized religion, but I definitely believe in God and consider myself a spiritual person.  My relationship with God is personal, and I don’t feel a need to share it with other people.  However, in my daily life when I’m struggling with a decision, or unkind feelings, or coping with stress, I frequently ask myself what God would want me to do.  Daily life with a sick spouse can be filled with stress, frustration, anger, resentment, sadness, loneliness, isolation, and exhaustion.  This is especially true when your day also includes raising children, managing a household, and working.

Over the past several months, it’s been a real struggle for me to deal with the resentment I have for my husband, our life together, and my life personally due to an illness we have no control over.  I’ve watched my husband go from a man who was always extremely energetic, busy, and on the go from morning until night, become a man who has so little energy that even the shortest tasks exhaust him.  I’ve watched him go from the life of the party to someone who stares into space, wanders around the house, and sleeps for long periods of time.  It’s extremely hard not to feel resentful when I’m running around taking care of the daily needs of three kids, myself, my husband, a household, and be responsible to go to a job.  I often feel like he is here physically, but his mind is tuned out.

I resent that everything is on my shoulders.  My plate is overflowing.  It makes me not want to do things for him.  I do it anyway.  It makes me want to run for the hills sometimes.  I daydream about what it would be like to run away from it all.  But I stay.  It makes me fantasize about life after the illness, when he’s gone someday.  That will be an awful day, but it will be liberating, too.  All of these things make me feel guilty.  It’s a daily struggle, a never ending cycle of resentment, fantasy, guilt.  We aren’t even at the point that my husband needs personal care, but I’m overwhelmed.  I had breakfast yesterday with my friend Yvonne.  She is my dear friend of 41 years.  I told her all of this and said, “I’m not even really his caregiver yet.”  Her response was, “you still have the mental stress.”  That acknowledgement was priceless for me.

I came home from breakfast and found the above poem.  I believe that sometimes God sends signs.  I believe that poem was a sign for me.  “For your love, sacrificial, is God at his best.” That line changed my entire perspective.  God works through us to help people who need it most.  It made me remember that question that I hadn’t asked myself in a while…what would God want me to do?  My husband is in need of someone to be here for him, not only to meet his physical needs, but emotional support, and to provide a home environment where it’s okay to feel lousy, and sleep, and just be sick.   When the days get rough, and the stress gets high, I will read this poem to remind myself of the good I’m doing for my husband and the example I’m setting for my children.  I’m sure there will be many days that are a challenge for me.  I’m only human.  Hopefully, there will be fewer days of resentment, and more days appreciating the time I have with my husband and making his years as comfortable as possible.

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6 thoughts on “Signs

  1. (((hug))) I admire you’re honesty, and the depth of your commitment. You always have an ear here, if you need to vent.

  2. You never cease to amaze me! The strength you have to bare your soul so that others in your type of situation won’t feel alone! I love the poem, and I bet God is already saying “you’re doing a good job.” You are.

  3. Even if you aren’t technically his “caregiver” yet, you are a mother, spouse, and homemaker. All of your roles require you to give of yourself, even without the added needs and stress of the Erdheim Chester’s disease. Your plate would be full regardless, so don’t forget how much stronger you are than any if us slouches who think our days are tough. I give you a lot of credit my dear cousin. I’m not God, but it might be nice to hear: You are doing a great job! We are here for you! XOXO

  4. I’m crying as I type this because you have described so much of what I feel and the guilt for those feelings is over whelming. Especially my resentment and thinking of the liberation. Thank you for your honesty and for helping me get through this difficult situation. You are an incredible person.

    • Thank you for taking the time to read my blog, and respond. It helps me to know that I’m not alone with these thoughts, either. I think they are normal feelings, but until you go though it, you have no idea that you could feel this way.

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