Friday, September 4, 2009

The Caregiver Role

As Invisible Illness Week approaches I find myself reflecting on the caregivers in my life. It is so easy to get caught up in my own drama, whatever is going wrong at the moment with my health, the things it causes me to miss out on, etc. . . we all know the drill. But what about the people who are there for us everyday? Do we take the time to really appreciate what they go through? I know I don't - at least not as often as I should. Chronic illness has made me selfish at times, something I don't like to admit out loud or even to myself. I tend to see how my illness affects me, while ignoring what impact it has on my loved ones and friends. I get angry when they don't understand everything the way I want them to. I expect them to always be available and willing to help. That isn't only unrealistic, it is unfair.

I happen to live with my mom. We are caregivers for one another, each one doing what we can for the other as our own health problems allow. It is all to easy for me to forget the terrible toll it takes on my mom to watch me when I am in pain, or scared and frustrated, or facing yet another painful test or procedure. She is first and foremost my mom, she loves me and wants to protect me from all bad things. That isn't possible when someone is chronically ill. As much as we might wish someone could wave a magic wand and make things all better, it isn't a reality. While I know this, and of course my mom knows it on an intellectual level, I can see the pain in her eyes when she can't "fix" things for me. Sometimes I get angry, thinking why does she need to fix this, why can't she just do what I ask of her right now and let it go. That's the selfish part of me, the one who hurts and wants her needs met NOW. But if I step back and look at my mom, I realize that my being ill has changed her. She looks older and more frail, the result of lots of worry and sleepless nights more than product of aging.

I guess what I am trying to learn, and maybe to pass on to others, is that we have to be very careful to remember that the people who care for us, who are our caregivers, are people too. They have feelings and emotions about our illness that are their own, and they have a right to those feelings. They have a limit - physically and emotionally and we must always be mindful of that limit and not push them beyond it. If we want others to respect and understand our boundaries, we have to offer that same respect and understanding back. I am trying to look at things from my mom's perspective more often. I think about how scared and frustrated SHE must feel watching me suffer and not being able to do a lot to alleviate it. I find myself in awe of her strength and love, the kindness she shows me with all the little things she does for me everyday.

Whether your caregiver is your spouse, your child, your friend or even a hired helper, you need to take a hard look at the PERSON behind the role and acknowledge their dignity, their struggles and their feelings. Put aside your own needs, even if only for a few moments, and be grateful for your caregiver. Say a prayer for them, ask God to grant them strength, peace and to bless them abundantly for the loving care they provide. You will find yourself having a much better relationship if you allow for honest communication between yourself and your caregiver. Make sure that the person who helps you gets some time and attention for themselves.

During my recent flare my mom was home with me round the clock the first week, and I finally had to order her to resume attending her senior center activities. She needed to have someplace she could go to get away from the situation for a little while. Somewhere that she could meet with her friends and talk, or just laugh and do something fun for herself. It wasn't doing her, or me for that matter, any good for her to sit around the house day and night watching me hurt. I felt better when I knew she had something good to look forward to, and I think she felt better knowing she could take a break from caring for me and just be herself, not my mom, not my caregiver, just the woman she is.

It is so easy to take our anger and frustration and hurt out on the people who are closest to us. It is easy, but so dangerous. These relationships are much too important not to nurture. Take a moment today to think about how hard your caregiver works to make things better for you, and then make sure you let that person know how much you appreciate them and all they do. A little kindness goes a long way.


Renee said...

This is absolutely beautiful and so very important for us to keep foremost in our minds. I needed to hear this after going through a period of time where I felt sorry for myself and neglected not by caregiver, hubby, but my family. I knew it was selfish and my issue, but this post is a good gentle but clear reminder of seeing things from a different perspective.
Gentle hugs

Maureen Hayes said...


Thanks for your comment. I was nervous about admitting that I feel selfish in this way at times, and it helps to know I am not alone.

The only I know to change a fault, is to admit it and try my hardest to do better in the future.

I appreciate your comment and steady support! I hope you are feeling awap.

Laurie said...

Such an eloquent post on an important topic, Maureen! It is so true that it is easy to get wrapped up in the symptoms and lose sight of the people who care for us. Every now and then I have an experience that stops me in my tracks and makes me realize how hard it must be to be the caregiver, and watch the people you love suffer, and have the burden of that care as well as the burden of not being able to "fix" it.

Great job.

Renee said...

I forgot to mention that I am experiencing first hand what a caregiver feels to some extent with Joel so sick now. I find myself going through alot of different emotions with wanting to care for him in his time of intense illness...I am seeing it now from his perspective after so many years.

Kelli said...

A beautiful post. Thank you for the reminder. We all need them from time to time.

Maureen Hayes said...

Thanks to all who have taken the time to comment and support me on this post. It is never easy to reveal parts of ourselves that we aren't proud of, but if it helps someone else than I am grateful for the opportunity to share my failings!

steph said...

My man is my caregiver, and I've been his. We're lucky that way, I think, knowing the other person's perspective.

He's a lot more patient than I am.

But I cook better.


Kerry said...

Yes, such an important message Maureen. It will be on my mind today as I interact with my husband and daughter-- look through their perspective, understand their feelings and their limits...and don't take their limits personally when they hit them (that's one I need to work on).

Feel so grateful to have my husband who cares for me (with awfully vast limits and vatts of patience). Appreciate this post Maureen and the reminder not to take those who love us and care for us for granted.

Maureen Hayes said...

Stephanie and Kerry,

You are both fortunate to have such caring spouses and you both seem aware of what they do for you. I am sure that you give them much in return, but it is nice to take a moment once in awhile to let our caregivers know how much we appreciate them and also that we do understand how hard they it as well.

SusieMills said...

Maureen, this post really touched me.

The way it's written is from such a non selfish perspective that I often find myself forgetting to look from.

I also have a loving husband but this post resonates true I think for all migraine sufferers.

I'm now following you and I was wondering if you would be interested in submitting to a newsletter that I'm trying to start up.

There are just so many fantastic writers on this site, if you're interested just visit my profile.

Stay strong Maureen!