Caregiver’s Advice: Take Care of Yourself, Too
Beth Betcher | 11.14.17
When Tanya Bailey of St. Paul, MN, was diagnosed with throat cancer in 2016, her husband, Peter, saw it was his role to support her through what they both knew would be a grueling course of treatment. It was. And he did.
With Tanya now on the other side of radiation and chemo—she is back to work and chipping away at her PhD—Peter has had time to reflect on what it was like to be a husband one day, and a caregiver the next.
“I had watched friends in situations similar to ours, and I thought I had an inkling that caregiving would be taxing,” Peter said. “But I also saw it as a powerful and important role. I wanted to do it well.”
So Peter approached caregiving, as much as he could, in the same way he works: strategically and thoughtfully. “I have a powerful passion for practicing possibility-thinking,” he said, of his career in organizational development.
Peter is the first to admit that the realities of supporting a very ill wife didn’t leave much time for possibility-thinking. Trying to keep Tanya’s weight—and spirits—up while staying engaged at work and running their household were, indeed, taxing.
But in some of those lie-awake moments that every caregiver knows, when it’s not clear what tomorrow will bring, Peter tried to take a longer view. He said looking for lessons that might help others was a way of putting his worry to work.
He came to look at caregiving as a continuum. Peter said, “You start as a caregiver. And if you don’t do it very well, you become a caretaker. And if it gets worse, you become a resentful caretaker. I was really aware that I did not want to do that.”
With Tanya’s full support, Peter did what caregivers across the planet are told to do, but no one ever does. He took care of himself, too.
“It might seem selfish to be a caregiver taking care of yourself first,” Peter said. “But it was like what the flight attendants say: ‘Put your own oxygen mask on first.’ Then I was available to be a really supportive caregiver.”
Peter did some bigger things to take care of himself, as part of laying out a caregiving support network. No. 1: He asked for more flexibility at work. No. 2: He and Tanya set up a CaringBridge website to tell their story. No. 3: He put out a call out to his circle of men.
The response to his call was amazing. “About 20 men showed up,” Peter said. “It was around a fire, and we had a meal. Some people played guitar … some shared their own cancer journeys and what helped them get through. It was just what I needed.”
Some smaller things helped Peter, too. Like Old Spice cologne.
“I would use my Dad’s cologne, and there was something really grounding and nurturing about being in the smell of my father,” Peter said. “It made me think of him … it was a family hug kind of thing.”
While no family goes through a cancer journey unchanged, Peter counts the gifts he received from taking care of Tanya among his most precious. “I am not a resentful, exhausted caregiver,” he said. “My wife and I are closer than ever. We have come through the fire. We did it together.”
This so very true. Even when you don’t believe you have time to take care of you actually you do. My husband is battling throat cancer proton and Keytruda treatments. Proton radiation burned him so bad that he became very sick with pneumonia admitted and with 2 hours turned septic and died. They crash carted him and he spent ten days CCU. In those 10 days I chose my family to be more important so I retired with a45 year career in the legal field as he needed me more than ever. Placed on a feeding tube can’t speak nor swallow and still will be more it for many more months. My advise as a caregiver you need to sit down and chat with your loved one and explain that I need to take care of me as well. He nodded his head and agree so I run short errands, continue to some of my meetings for an hour or so. But at the end of the day I do take care of me but I just can’t leave his side for very long because I want to be by his side. It is great advice to remember your own doctors appointments etc.
I’m very happy that things worked out well for you both. Keep the faith brother!
My Family lives in MD, 2000+ miles from my home in TX, where I live with a man I caregive for. If I would not live here, I would be homeless. I have only an SS check, and at the age of 70 I am not physically up to working a regular job I have no college, or technical education and am just self taught I have no savings and no money to move back home. There is no one to take care of me, nor financial resources to help. My 3 small dogs help me cope emotionally. If i leave, Then M, will not have anyone to care for him and he refuses to go to an assisted living place. If he is forced to go to one, they would sell his home to pay for it, then I would be homeless. Is a no-win situation. My Advice look to lawyers advice and have a pet to be an emotional support animal
There is no one to help me take care of my husband. Everything falls on me. I don’t see any way I can take care of me if I am taking care of him
fth
As a someone whose husband died recently of cancer, I heard many times that I should “take time for me.” I want to say that sometimes it’s impossible. Sometimes there is no time to take, no-one else to help. Please don’t make caregivers ashamed for not doing something impossible on top of the impossible job they’re already doing.
My daughter is 29 and diagnosed with breast cancer. She starts chemo in 2 days. I’m angry, scared and am trying to get a grip. She says she is now mentally prepared. She’s a fighter, yes, and acknowledges what she knows will get her down. I can’t fix it. I cry, scream, exercise, pour myself into work. Phew! Thoughts?
Thank you for your candid sharing:) Way to go!
seo is really helpful.
seo is helpful.
Thank you for the reminders to take care of yourself. My husband was diagnosed with pancreatic cancer in September 2016. We been through surgery, chemo, radiation, several hospitalizations to name a few things. Just when you think you can catch your breath, you can’t. This was a good reminder to stop, refocus, take time for “me” and remember that a burned out caregiver is of no good. Your advice was timely!
very helpful. thank you for such good advice!
W hat a precious, powerful memory. My huband and I just completed the caregiving experience. I was sick, he was a terrific caregiver. He still accompanies me to the doctor, reminds me about my meds, shots, etc. Each doctor appt. can be challenging, because we never know if the cancer will return. It is a dark nightmare, we try not to think about. Thanks for your word. Men are great caregivers, too!
Wonderful advice. Thank you for sharing to help others. All my best to you both.
you have touched our hearts, my husband,a Parkinson’s patient, is also legally blind and at times it is so overwhelming to think I will never be able to give him everything he needs. I have my own health to think of since we are in our 70’s so this story helped me drop some of my guilt feelings for having left him with a caregiver for the afternoon while I lunched with the girls! Thanks for sharing and may your journey continue on a positive note. God’s peace to you
I’ve been aware of Caring Bridge throughout the struggles of several friends – patients as well as their caregivers. One of the most difficult functions is keeping caring friends informed in a timely non-repetitive manner. I am forwarding this to caregivers who need your help with this communication factor.
Good for you, Peter! That makes you and your wife both conquerors of that grueling disease. And, she is fortunate to pull through and you are both better off relationship-wise for it.
Thanks for sharing, Peter. Truly important information and not always easy to carry out.
Blessings,
Jan in the Hudson Valley of New York
I tried to do as you did when my mother was going through Chemo and Radiation. My brothers and sisters made me feel guilty for not being there 24/7 for her although they didn’t mean to. They were the ones worn out because they wouldn’t take a break. There are six of us so there was no need for us all to be there all the time. I know how I handled it was right but it is nice to know that others agree with me.
Very eye opening! I’ve worked in the caretaker industry my entire life. I’ve seen first hand the “resentful caretaker” syndrome. My parents divorced after 27 years, my father having been the caretaker for my mother for most of their married life. I am now at present the caretaker for my husband. He has critical heart failure, had a heart pump (L-VAD) placed in Nov. of 2015. after a brain bleed in Aug. of 2017, he was finally listed 1-A for heart and kidney transplant. So now we
wait. Going into our 5th month in a hotel room across the street from the Hosp @ Mayo’s Clinic. I think it’s time to give him some space, while I have a little ” ME” time. for both our sakes.
Beautiful! Thank you for sharing. We are about to enter our second round of surgery and treatment with our 33 year old daughter whose brain tumor has returned. The first time around I fell apart a year after she completed her treatment even though I thought I was good with self care. I want to do it differently this time. I need to allow others to help and I need to ask for help. Those will be my learning moments.
This is encouraging , practical, and helpful,. Thank you for sharing your and Tanya”s story, Peter. Your wisdom, perseverance and long term thinking are an example to all of us. And best of all your actions were motivated by love. and commitment. Kudos to both you and Tanya.
Thank you for sharing- it IS a reminder that as caregivers we do need to take care of ourselves first but I for one often find it hard to do.
Great story and great lesson to be learned. I am sure many that read it feel the same as me and hope that they never need to use this knowledge, but if that day comes I will hopefully remember what I read.
Wonderful. Gives all of us some strength to carry on.
Having been there I applaud his reality.
My wife just had hip replacement and know i have become the caregiver and i have found there is very little time to rest in between a full time job and taking care of your spouse, keeping the house clean and everyday chores, it is exhausting. I have a new found respect for the people who do this everyday.
Wonderful story. He gets it.
Thank you Peter. I am in a new season of caring as the manager of a Hyperbaric Clinic. I am also part of our church’s Stephen Ministry Team. And I cared for my husband who was bedridden for 3 1/2 years following a stroke. He died with esophageal cancer. I needed to hear what you had to share. If I don’t take whatever time God desires for me to fill my Heart with Him, I will be bankrupt – SpiritSoulBody.
Again, thank you and your wife for doing this God’s Way. May He continue to bless you beyond anything you can think, ask or imagine.
Peter, what a refreshing story you have given to us caregivers. Thank you. I love the Old Spice cologne. . . a sort of special family hug. A gathering of men friends seems a supportive gesture that built community. . . not only for you, but for them as well.
my hell is here on earth, 9 weeks ago my spouse became very ill. His left ventracal slowed down working making red blood cells which provide oxygen to the body,, he could not bring oxygen in the body do to the ventracal, blood clot in leg, upper gi test, lung has nodules in which they will check for cancer, if they enlarge. on warfarin to thin blood, first prescription was 552 dollars I refused it I cannot afford it, also insulin went from 89 dollars to 3oo , so I am getting help from a company for 29.99 a month to afford the insulin. 50 dollar copay everytime we go in for speciailsts 15 co pay to phycians. wound clinic bill don’t know the cost yet ,ulcer in large toe he is diabetic,, cant afford everything, my depression pills have been increased 2 a day to 9 I have too pay for I go without a lot of weeks,,i INR blood is drawn 3 times a week, now that is too high of blood, blood pressure 309/189 in left arm by heart. If anyone can help I would greatly appreciate it,,,
I love that story. Peter was blessed to have so many men in his life. I think many men do not have other men in their lives. Women seem to want to have many women in their lives. A club or church brings together many people, from whom may come close friends.
That is not a professional observation, just comes from my own experience.
I often think about the differences between caregiving for a spouse and doing the same for an aging parent. With a parent, you are always the child, which make taking on authority more difficult, especially, if the parent was once highly independent. A spouse might be more accepting of a wife, or husband taking control. I would ask all families to make sure they have Power of Attorney and Power of Medical Attorney, done in advance of any situation. Once an illness occurs or dementia, is it not easy to get that
Thank you for sharing Peter’s story. I lost my only child, an attorney son, at age 42 to lung cancer eleven years ago. I experienced caregiving, along with my daughter-in-law, and I certainly could relate to Peter’s story. I am so glad for his positive outcome.
Caregiving is such an important role when those we love are facing difficult physical challenges. I wish we had known about Caring Bridge at that time. Thank you for the service you provide when it is so needed.
Beautiful story. Tanya was lucky to have him
Beautiful. Thanks for sharing. We supported a friend through her double lung transplant process for a number of years. CaringBridge was an amazing and supportive tool.
I had the honor of being my late wife Beth’s caregiver while she battled stage 4 lung cancer. It was the most rewarding experience of my life. It was also very difficult and heartbreaking. I learned early that I had to take care of myself to remain strong for her and our family. I can honestly say that during that arduous year I received much more than I gave.
When giving care to others, it is so easy to lose the talents we have that make us who we are. Support should be a part of every life. We need to feel appreciated. Praise for a job well done gives us the self esteem to achieve every Dream.
Memama loves you!
Absolutely beautiful!
I was a caregiver for over 30 years for my husband who had MS so I know all of the feelings you address. He was such a sweet, caring man and we were married when we were teenagers. We laughed a lot and cried very little. His main expression to me up until the day he died was “take care of my Chloye (me) so she can take care of me” and he smiled so sweetly when he said it. How could I have ever been resentful with that kind of patient! I love your comment about “Old Spice” — it is so important to call on family and friends to keep your spirits up. My Dad used Old Spice too and I can still smell it when I think about him.
Thank you Peter. Having a father being diagnosed with cancer is very tough. I need to be able to be strong for both my mother and father. I hope to keep them strong as ever in this journey. I need to tell and show my mother that it’s important to take care of herself too. God bless!
Beautiful testimony!
Amen Peter and Tanya! You not only shared your stories, but touched us all with the healing. God Bless!
Love & Prayers
Gwynne
Good work Peter! – the work of putting the heart into practice in the world. I’m not the least bit surprised by your journey. I’m so glad that Tawnya is on this side of the acute phase of this. And I’ve traveled a similar path with Diane and her breast cancer. I wish you both well and will be holding you in the Light. Best always – and thanks also for writing about it!
Peter this is very powerful. Thank you for writing this,and talking about your wonderful marriage.
Right on. Right on. Right on. We must nurture our own capacity to nurture others. Thank you Peter.
Being a part of this was very special. Thank you for the invitation Peter.
Wonderful and inspirational. Thank you both!