Pat’s Place: Find A Way To Take Care Of Your Caregiver
Do you remember reading about or watching the video of Randy Pausch a few years back? He’s the dynamic Carnegie Mellon professor who became famous after he was diagnosed with pancreatic cancer — and then gave an incredible lecture, “The Last Lecture,” about his impending death. A video of his talk went viral — before viral was even cool.
Randy lived and died with such grace that it is easy to forget that he had a wife and caregiver, Jai, who stood by his side until the very end.
Like most caregivers, Jai spent much of her time after Randy’s diagnosis in the shadows. Randy was the one who was dying. Randy was the charismatic speaker who set the world on fire and received all of the accolades and attention.
In the meantime, Jai took care of their three kids, managed the house, and oversaw Randy’s care.
How do I know all of this? Because my wife and caregiver, Pattie, just finished a book by Jai Pausch called “Dream New Dreams.” The book touched her in a way I hadn’t seen for a long time.
Let me pause here and share that after five years of living with and taking care of me, Pattie has extreme “multiple myeloma fatigue.” She rarely attends support group meetings anymore. She doesn’t read anything I write about myeloma anymore.
Don’t get me wrong. Pattie is a fabulous caregiver. If I’m in pain or something’s wrong, she immediately switches back into “super-caregiver mode.” But taking care of me and listening to me talk about myeloma non-stop has worn her out.
So watching her get so excited by any book about cancer was an amazing breakthrough. “This must be some book!” I thought to myself.
So I sat down and read it. It didn’t take long for me to realize what she found so engaging. Jai had learned what so many caregivers that have come before her already knew, that “many oncologists and cancer centers do not offer support for the patient’s caregiver. And caregivers can quickly find themselves overwhelmed without the resources to help.”
Jai Pausch had written a “What about us?” manifesto for caregivers. And my wife was listening.
As I write this, I’m struggling to focus on any one part of our story. There are so many directions I could go if I had the space and time: How caregivers need more support and “me” time. Or as Jai so poignantly wrote, they can “lose all of themselves in the swirl of fear and waves of strong emotions.”
But to me, all that really mattered is my wife was talking to me about her feelings — and my cancer again.
If there is one takeaway message I can share with you this month, it’s this: Find a way to take care of your caregiver!
I’m not sure if you are aware of this or not, but Pattie is also a cancer survivor. I was her caregiver — on and off — for over six years. But that was over a decade ago. And it wasn’t such an overwhelming, never ending process like it is when you are taking care of a multiple myeloma patient. There was a light at the end of the tunnel, an endpoint. There was the real hope that Pattie could be cured, and then we could get on with our lives.
So I’m going to think back and dig deep to remember how I felt and coped when I wore a caregiver’s hat. I promise that I will come up with some unexpected suggestions, for both patients and caregivers, in time for next month’s column.
Maybe some of you can share in the comments section your suggestions for dealing with a chronically ill patient — without losing your sense of self.
Until next month, feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
God Bless you both! What a touching story that really touches my heart. My husband was diagnosed with Multiple Myeloma about 2 months ago. I'm already wiped out! But I want to be there for him for everything. Every step of the way. I have had a weekend away with some girlfriends and me and my husband are spending this weekend at a cabin not far from home. Great to get away...an escape. Of course you have to come back to reality but that's okay.
Hi Pat, When my husband and I were looking after his mother, in our home, who had stomach cancer, and we had two preschoolers and a really un-trained 'rescue' type of puppy, we were both getting really burned out. My sister-in-law came to stay with us for a few days. We went to the mountains for a weekend getaway, and she got a chance to visit with her mother too. So by sharing the 'care giving' a bit, it benefitted all of us.
I felt really bad for my husband when I got my diagnosis of cancer, about 20 years after that. He just looked so worn and worried, and scared that I wouldn't survive either. We also shared our time with family, and as soon as we could, started going on little trips together and separately too! That cheered us both up, and luckily we got through the worst time together, and are closer now than ever!
WISHING you and your good wife all the best of times together, and hope everything goes really well for both of you. BTW, I put the book 'Dream New Dreams' on hold at the public library! I tried to watch the video, The Last Lecture, but I didn't have the heart for it. One of my friends died of pancreatic cancer and it was very upsetting to all of us who knew her well.
My husband really wants to be present for my doctor appointments, and I'm grateful for this. However, some appointments are just biophosphinate infusions, or an x-ray. So, one of the things I try to do for him is to get to these by myself, giving him a break. Another idea I got, I think from you, Pat, and that is to spend no more than an hour or less on myeloma related reading, including my favorite, Myeloma Beacon. This also includes talking about it. This helps both of us.
Julia Munson, U.P. of Michigan
Another thought:
Some times we with myeloma have a cold or a headache, or other unrelated aches and pains, just like anyone. For my loving husband's peace of mind, I tell him this, so he doesn't worry about relapse, etc.
Julia Munson
My wife has been my caregiver since my 2003 diagnosis of Multiple Myeloma. My approach has been to do as much as I can without involving her. For example, she rarely accompanies me to appointments with Doctors or for infusions. I will give her a short review of my progress and it usually is "everything is OK". I had tandem transplants in 2004 that required her involvement getting me to and from the clinic daily for a few months, but after that, I always go alone and manage my "numbers" by myself. I think this approach frees her up for other activities with our children and her friends. I don't want her to constantly worry about me and she needs to pursue her own interests. Having MM is always on my mind but it doesn't have to be on hers.
Julia,
Thanks for that idea, of spending an hour a day(or less) on MM stuff. I'm an obsesser (sp) so I think that's what I need to do. Thanks to Pat for the original idea. I'm switching from aredia to zometa next month and I'm already thinking about it way too much!
So great to hear from everyone! Sometimes it isn't easy writing about such personal things. But I think that it is important for caregivers to realize they aren't alone--and shouldn't be expected to be perfect, either. We all deal with these things in different ways. But taking a step back and trying to see the big picture once in a while is important. If I can help with that, I am so pleased!
Snip,
So glad to see you back!! Hope life is good.
I fine your story inspiration and know that you are blessed with a wonderful caregiver.
..But London and Paris had to be lovely...Louvre/Champs Elysee, did you walk through tuileries...what romance...Eifel Tower...awww Paris in the summer...what romance.
So glad the dreams came to fruition...those were tears of joy...I know...
Seending you both warm hugs and blessings.
I am headed to Turks & Cacios...sooon as I finish this 8th cycle...
blue skies, balmy breezes and the tropical sun beaming down on my skin kissing it with a carmel glow...
Can't wait
Caregivers are so important to us, aren't they? I have often wondered how those of us without them get on with this disease... it seems virtually impossible to me, frankly.
One suggestion I have: if it is possible, make a dream come true for your caregiver. I know that isn't always an easy thing to do, but if you can, doing it has a great deal of value.
I'm in remission now (yay! Just had that confirmed yesterday!), and Beloved and I went to London and Paris for a couple of weeks (we just came back, actually). This was a dream of hers for our whole life together, and that dream died for her with my dx... she knew we'd never get there. Well, things came together differently, and we DID get there. She wept so much. We laughed so much. She had so much release. She's like a new person now.
This isn't over, of course, but having had the time to let it go made/ is making a huge difference to her.
WOW! Sounds like a wonderful trip. I'm not confident about leaving the country. Good for you. Good for both of you!
Get new Myeloma Beacon articles by email.