The New Normal: Caregiver Guilt

the-new-normal_caregiver-guiltThere are so many layers to caring for a loved one that has an illness or medical issue. I thought I had experienced all of them, figured out and mastered, this role once and for all. It has been five and a half years since Justin’s original diagnosis, in that time he has participated in countless clinical and research trials, went through traditional chemotherapy, and has now spent a year of his life fighting this disease

I thought I was prepared. I thought I had figured out how to deal with the emotional aspect of being the caregiver to someone with cancer. The truth is, I wasn’t dealing with the emotional aspect of my role at all. I was avoiding it.

There is a part of me that shuts down when my husband is gearing up for, going through, or coming down from a treatment process. I become an all-business freight train. Every single thing that happens in my daily life is measured to what Justin is going through, not by him, but by me. I have less patience for nonsense, including my own.

There’s no crying in baseball.

Sometimes being a caregiver means you don’t get the time to deal with your own emotions, because, let’s face it, it’s easier not to. We all know it’s not healthy to ignore your own emotional and physical needs, but I’m here to tell you, as someone who avoided dealing with my own emotional well-being, it catches up to you.

There is this heavy guilt that comes along with taking time for yourself when you are also caring for someone else. It seems selfish to stop, to yell, to cry, to be still – there are so many other things that you could be doing – that you should be doing.

But just like the Delta Flight Attendants tell you: “Put your oxygen mask on first before assisting other passengers.”

Easier said than done.

Going into Justin’s admission I knew that I would stay the first night with him at the hospital but would head home the following night to spend some time with Bruno, our cats, and just get a good night’s sleep in our bed. As soon as, and I’m talking the minute, we walked onto the BMT unit the guilt set in. It was a pit in my stomach, a swarm of butterflies, all erupting at the thought of leaving him here to go back home the following night. The swarming caused this kneejerk reactionary crying that was unstoppable. I tried to hide it, to just swallow it and be present. It didn’t work.

I spent a good portion of our first night in the hospital and most definitely the second day crying about leaving Justin to go home. I asked him repeatedly if he would be okay on his own, knowing that he would say yes, and most likely needed me to get away from him for a few hours. He always said yes. Always.

As the hours ticked by the guilt was crushing me. How could I leave him here? Why am I reacting like this? Why am I not stronger about this? I felt so incredibly sad about him being in the room alone, and me in the car driving away from the hospital.

It’s strange being in the hospital for an extended amount of time. You lose your bearings and grasp on the real world, you forget about everything outside, the hospital campus, the hospital itself, and ultimately live life on a single floor. You forget what is going on around you. The realization of what’s going on out there while you’re stuck inside is paralyzing and overwhelming. I didn’t want to become part of the outside world while Justin was still stuck inside.

After several text message exchanges with my mother, a good friend, and conversations with Justin, I packed up my things for the night. I procrastinated on actually standing up to walk out the door. Started random conversations, putzed around on my phone, smiled at Justin with tears in my eyes. I was a mess.

Finally, I got up the courage to just go. I kissed Justin goodbye, asked him one final time if he would be alright and made him promise to call me, text me, and Facetime me. The waterworks started, he laughed at me, and pushed me out the door. I managed to make it to the car without having a nervous breakdown, drove the 20 miles back home, pulled into the garage, walked into the house, greeted my puppy, and collapsed on the bed crying uncontrollably. Bruno licked my face, laid down next to me, and once I felt like I had sufficiently gotten my emotions out, I set out to make some dinner and get ready for bed.

It wasn’t until the next morning, after getting a full eight hours of sleep, having the luxury of making my own coffee and breakfast, and being able to spend a few hours at home better preparing for my next trip to the unit, that I realized just how necessary that time was. I felt so much more refreshed and prepared to spend another night at the hospital. You see, I wasn’t doing anyone any favors by feeling guilty about needing to take time to recharge. I was nothing but a crying mess for 36 hours, and I’ll tell you what: crying messes are not useful in the bone marrow transplant unit.

I learned a valuable lesson with this new chapter over the weekend: taking care of yourself is imperative, and giving into the guilt is not an option. No one can be “on” all the time, it’s not a realistic expectation and chances are, no one expects you to fill quota anyway. Take time, be still, breath, recharge, and go back in the ring.

35 thoughts on “The New Normal: Caregiver Guilt

  1. How courageous, honest and healthy this post is. I’m so very proud of you. I love you and I’m honored to help you find relief and Emily time in the process.

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  2. Oh my goodness. I knew I was going to need a deep breath to read this, but it’s even more moving than I imagined. I already said this on Instagram, but I think it’s worth repeating – Whether it’s being a parent, looking after the elderly, or caring for someone with an illness, I think caregiving is the hardest job in the world. Honey, I cannot even begin to imagine just how hard it is for you, but I can empathise. My Mother had The C when I was little and despite my tender years, I clearly remember the challenges it presented to my Father and older Brother. I truly wish you and Jason all the very best and send you both a world full of healing vibes. Stay strong my lovely xx

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    1. Thank you Suzy, that is so very sweet! Justin is so strong and he has some amazing people caring for him at the hospital, it makes it a little easier to go home, shower, hug the puppy, and get some sleep. 💛

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  3. Well crap, now I’m crying with you! Lol… Your strength blows me away, Emily. You are seriously such a rock, I don’t know how you do it. Please remember, its ok to cry Emily. Its ok to crumble and feel weak and scared. You ever see those memes of facebook that say “its ok to lose your shit, to cry and yell and scream. Just dont unpack your suitcase and live there”….? You are amazing, Em. We’re always here if you need anything. Love you both!

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  4. I’m so sorry to hear about your husband!
    You have to take care of yourself or you’ll get sick.
    As a cancer survivor, I would HIGHLY recommend meditation. It only takes 10 minutes a day. It helps with focus, gets rid of anxiety and, in my case, it grounds me. Over time, you’ll be able to get rid of worry since you are able to control what pops into your head.

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      1. Yeah, you don’t even need to spend 15 minutes! Try the HeadSpace app. It starts with ten minute guided sessions. It changed my life! I wish I had meditated when I was diagnosed. I just started in January. Good luck to you both!

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  5. I can’t even begin to imagine. I had a tiny taste of this when my late father was diagnosed with Alzheimer’s back in ’96, but my experience isn’t even close to yours. Sending tons of positive energy to you and your husband. *hugs*

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  6. Oh, Emily. That guilt is so hard to manage. I feel it sometimes too just being a parent. But it is imperative that you take care of yourself as well so you can be strong for your loved one. Sending prayers and positive vibes your way!

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  7. I understand all of what you have said there. I spent the last four years looking after my Mum who had dementia and I forgot who I was. She passed away In November and ever since I have been fighting every day to get myself back on track. I’m so used to being someone’s carer, daughter, sister, employee that I forgot that I was me.
    Time on your own when you care for someone else is not just important, but vital, because sometimes we just need to breathe to be able to carry on.
    Grab whatever you can, I’m sure your hubby will understand 🙂

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  8. You write so beautifully about this experience, full of heart and kindness. Having the grace to love and care for ourselves doesn’t seem so hard, until it is. Thank you for sharing your experience. I am uplifted.

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  9. You did such an awesome job of explaining exactly how it feels…. while reading your post i could see myself in the same situation! In 2013 my husband had 15 hospital admissions…. yup that 15 times in 12 MONTHS. I have after spending days on end sleeping in an icu waiting room decided I needed to go home and just get some rest for one night… drove all the way home , got into bed and just broke down and couldn’t do it and drove all the way back to the hospital at 1030pm because the guilt was so horrible. We don’t have near as many hospitalizations now because most of the care is provided inhome by palliative/hospice care. Thank you for posting this it really made me feel like someone out there gets it and totally understands.

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    1. Wow, thank you so much for reading, commenting, and sharing your story. My husband ended up spending 9 weeks in the hospital and it was the hardest thing I’ve ever done. I can’t imagine the exhaustion, stress, anxiety, and unfortunately, guilt, that you must have felt with 15 hospitalizations. I hope that you feel some relief being at home, I know that it brings its own set of challenges but I know, for me, being at home has brought a sense of comfort that I couldn’t get in the hospital. Thank you so much for stopping by and sharing, you’re in my thoughts and prayers!

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      1. Wow 9 weeks is a very long time… i think our longest admission ever was 45 days… he had a pulmonary Embolism and was on a vent. Typically our stays are 4 to 7 days thank goodness short is a little more tolerable. When he does have to be admitted it amazes me that some family members sometimes say “Well look on the bright side at least you get a little break from your caregiver duties” It always shocks me that anyone could consider running back and forth between the hospital and home several times a day is a “break” LOL

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      2. Funny, I felt the same way. I was told over and over again that my “role” would start when we got home and him being in the hospital was way more stressful and exhausting than being at home. And let’s be real, there’s never a “break” from caregiving. 😉

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  10. I’m so sorry, I can say I know exactly what you are going through. I never gave the caregiver enough credit or thought for that matter until I became one! I am not as STRONG as everyone wants me to be. I’m a closet crier, it kills me to see my husband sobbing and saying he can’t do this anymore! May God put his healing hands on your whole family!

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