Father-and-daughter-after-radiation

Practical Advice for Being a Good Caregiver When You Have Fibromyalgia

It’s always fascinating to observe the relationships that people have with their parents.  I know some people who don’t have a relationship at all with their parents.  For those of us who are fortunate enough to still have our parents in our lives, it’s safe to say that the dynamic is less than perfect.  I have found that as I get older, my relationship with my own dad continues to evolve.  I’m now 40 and my dad is 65.

We have always butted heads.  We are so much alike that we clash.  Whenever there is a family get together you can always count on us to argue about religion or politics.  They aren’t really arguments as much as contests to see who can talk the loudest.  We both want to be right.  We both think we are right.  As much as we argue, we can also have a good time.  We have the same sense of humor.  We can make a joke out of anything.

Thanks to Type 1 diabetes, my dad has glaucoma and, as a result, he is blind.  Last month he went in for an MRI to check for vascular dementia.  His doctor informed him that he did not have dementia, but he did have a tumor that had invaded most of the temporal lobe in his brain.  The next day his doctor removed a portion of a malignant brain tumor known as glioblastoma.

The first thing I did was research what glioblastoma was and what we were supposed to expect.  We had all accepted the news, but the worst part was telling my dad about it.  He wasn’t able to retain any information because of the swelling in the brain, so we would tell him that he still had the tumor and it is cancerous and he never remembered.  Every time he expressed relief that his tumor was out, we would have to break the news to him over again.

Once he accepted the diagnosis, we got to work.  We know there is no cure.  The treatment will only make him comfortable while he is still with us and to slow down the growth of the tumor.  So he decided to start treatment.  6 weeks of daily radiation treatments and 8 months of daily chemotherapy.  Despite the treatment, we are living life as usual.  We still get together and laugh and eat and watch the kids play.  Everyone is very upbeat despite the prognosis.

I am so busy life trying to manage my own life, but I knew that at this time I would have to rearrange some things and make some time to help my dad.  My stepmom had a business trip that she could not get out of this week.  Someone needs to be here to take my dad to his daily treatments and to help him out with daily activities.  I packed up a few things and packed up the kids in the car and we headed to Pasadena to stay with him for the week.

On our daily agenda will be going to radiation treatments and making sure that he takes the large assortment of pills that he needs daily.  Making sure he has meals and helping him with the cats are also part of the routine.

Being a caregiver is a big job.  Just ask anyone who has ever done it and they will testify that it is a full-time job.  The situation is what it is and there’s not much I can do about it.  What I can do is control how we approach everything.  I can either sulk and think about what a drag it is that my dad has cancer, or make the most of the situation.  Guess what?  I’m choosing option 2.

There is so much light in this tunnel.  My kids have spent the week bonding with their grandpa.  They get to goof around and swim with him.  They get to play with the cats.  They get to go to the doctor with him and meet all of the people that he interacts with daily.  We’ve gone out for dinner and grabbed some desserts at some new places (he enjoys an occasional splurge).  It has been fun for them.  Grandpa’s house isn’t the boring place without cable that they usually see on TV.  They’ve made themselves quite comfortable here and I’m certain they feel right at home.

If you are living with fibro, you know that it’s hard to predict when you will feel good and when you won’t.  It’s hard to make plans and I know that I often create my own cycle of anxiety when I worry about anything that might happen in the future.  I didn’t do that this time, and guess what?   Everything has been fine.  There have been a few times when I’ve felt some fatigue or been a little tired.  I simply powered through it and put things in perspective.  Whatever I may be feeling, it’s probably not as bad as what he is feeling while going through chemotherapy and radiation daily.  He hasn’t complained once or expressed the slightest bit of self-pity.  We simply get in the car every day and go to the City of Hope with positive attitudes and smiles on our faces.

A few years ago I would have never imagined that I would have the strength to help another person.  It didn’t happen overnight, but I’m living a fairly normal life.  It’s my own normal, and I’m aware that other people have their own version of normal.  It feels good to know that I am making a difference.  So fibro doesn’t have to be a death sentence after all.  All it takes is the right treatment and a new perspective.  It’s not easy, but you have to be determined to refuse to let the fibro win.  Go on with your life despite the fibro.  It’s not easy, but it’s totally doable.  A positive attitude is always optional.

4 Comments


  1. //

    Thank you for the recommendation! I love to read so I will definitely check out that book!


  2. //

    Thank you for sharing such a personal story with your readers. There are so many of us caregivers out there who can empathize. The role reversal is scary and overwhelming and I find that reading stories like yours helps me feel less alone in the process. You are making it work and your story is inspiring!
    My number one recommendation for caregivers is the book “9 Realities of Caring for an Elderly Parent”(http://stefaniashaffer.com/). I was truly touched by the depth of sacrifice that Steffania made at will for her Mom. This story not only blew me away, but also served as a call to action within myself. To sacrifice love, career and, in essence, one’s identity for the sake of a parent is the ultimate act of giving back. I emphatically recommend this story to anyone going through this stage in their life. It is really inspiring. Thank you again


  3. //

    Sorry to hear that you had the same experience. You are right though, all I can do is enjoy the time I have left. Thanks for the support!


  4. //

    so sorry to hear about your dad I been through a similar situation with mine prayers that he gets better stay strong and enjoy your time with him

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