How do care receivers feel.

Posted by NextGary on October 24, 2014

 

The Other Side of Caregiving: What It’s Like to Receive Care

receiving careI am a huge fan of Garrison Keillor’s radio show, Prairie Home Companion.  I am particularly fond of his take on adversity. He says, “Nothing bad ever happens to a writer. It’s all material.” 

I tried to bear that in mind after my husband had major back surgery earlier this summer. I have to admit that caring for him tried my patience and tested my endurance.  (It also provided me with some great material for my daily blog!) 

When we are caring for someone who needs help with showering, using the toilet and dressing, we reach an entirely new level of intimacy. Some of the tasks we do for those who can’t care for themselves aren’t very pleasant, and no one could blame us if we felt turned off by the sights and smells of the messes we have to clean up. 

 I recently visited with my friend Linda who cared for five elderly relatives through the end of their lives.  The last one finally died a few months ago.  She said that although the years she cared for them were incredibly difficult, she always felt grateful that she was in a position to give care rather than needing to receive it. She also said that if she ever became a care receiver, she would try to remember the perspective of the caregiver and be gracious, patient and grateful. 

It’s Hard to Feel Grateful When You’re In Pain

I mentioned my conversation with Linda to my husband, who is still in the process of recovering, and he said, “It’s hard to be cheerful and to feel grateful when you’re in pain.”  He went on to say that needing so much help made him mad. He was mad at his body.  He was mad at the pain, and he was mad that he couldn’t do the most basic things for himself. 

He said he felt vulnerable and needy – emotions with which he is not familiar or comfortable.  It’s also been difficult for him to not be able to do things the way he likes to have them done. Alex is very particular. I’ve always said that if you want something done quickly, ask me to do it. If you want it done perfectly, ask Alex. Fortunately, we cut each other a lot of slack and we both have a good sense of humor.  I also have a lot of patience, which came in handy when I was helping him shower and he was giving me explicit, detailed instructions on how he liked the spaces between his toes washed. 

My patience did wear a little thin when he woke me up in the middle of one night after I’d already been up with him half-a-dozen times and said, “I spilt something on the bathroom floor, and since I can’t bend down, I need you to wipe it up.” 

I didn’t fuss or grumble.  I got up out of bed and grabbed a towel.  When I started toward the puddle, he said, “Don’t use that towel.” 

I didn’t say anything.  I used the towel he thought was appropriate for the job, but the next morning at breakfast, I said, “Alex, I’d like to give you a little advice. If you are going to wake me up at 3:00 o’clock in the morning to clean up a mess you’ve made, you might not want to criticize the towel I choose to wipe it up.” 

He looked a little sheepish, and I know since then he’s tried hard to not be critical. At the same time I know that being incapacitated physically and needing to depend on me to do the things that he’s always done for himself (perfectly, by the way) makes him feel like he is out of control, and he doesn’t like that one bit.

The Courage to Be a Caregiver… and Care Receiver

I can identify. About a year ago I had surgery on my foot.  Like Alex, I am fiercely independent, and I don’t like to ask anyone to do tasks for me that I usually do for myself.  During my recovery there were times when I wanted a drink of water or a cup of tea, but I didn’t ask him to get it because I felt like he’d done nothing but wait on me all day. 

One afternoon I wanted something, and rather than ask, I got out of the chair and started to hobble toward kitchen.  He pointed at the couch and sternly said, “Sit!  Stay!”  He told me emphatically that I wouldn’t heal if I didn’t allow him to help.  I knew he was right, but not being able to care for myself made me feel helpless and weak, and I hated it. 

The Chinese Philosopher, Lao Tzu said, “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 

It takes a tremendous amount of courage to be a caregiver. When someone we love is suffering we have to find the physical strength to meet their needs while also taking on tasks they used to handle when they were well.  Frequently we have to do all of this when we are emotionally drained and bone-tired from lack of sleep.  We have to summon the will to continue to love them when pain, disease, depression or dementia causes them to act in a manner that isn’t very lovable.  And sometimes we have to come to terms with the fact that this may be what our life is going to look like for a very long time.   

As difficult as that is, I still believe it’s easier than being a care receiver.  When you are feeling weak and needy, it takes a lot of self-confidence (and reassurance) to believe you are still worthy of being loved deeply. You have to be willing to keep moving even when your body is screaming,”Stop! I can’t stand this pain!”  You have to humble yourself and swallow your sense of pride as someone else helps you on and off of the toilet, in and out of your clothes, in and out of bed. You feel vulnerable and indebted, and you have to dig deep and work hard to hang onto your sense of self-worth. It takes enormous emotional strength to remain positive and to graciously accept the help you need.   

If you are caring for someone who cannot manage his/her own care, I hope you will also take care of yourself.  Find a way to get enough sleep.  Eat healthy food.  Get outside and walk.  Do what you need to do to maintain your physical, emotional and mental health.  If you find yourself feeling a little down, take a few minutes to feel good about the gift you are giving, and then reflect on what it would be like to switch roles. If you’re like me, I suspect you will decide that as hard as it is, it truly is better to give than to receive. 

Resource box: 

Elaine K Sanchez is an author and caregiver speaker.  She and her husband, Dr. Alex Sanchez are co-founders of CaregiverHelp.com,  a video-based caregiver support program.  Their courses on surviving the emotional stress of caregiving are available for CE credit for mental health professionals through Professional Development Resources.  Elaine also writes the daily blog, “Caregiver Help Word of the Day”. 



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