What were your greatest challenges as a caregiver?

Posted January 5th, 2016 by Be The Match and filed in Patient Stories
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The caregiver journey before, during and after transplant can be filled with challenges. What was your greatest challenge as a caregiver? Share your thoughts on our Be The Match – Patients Connect Facebook page. You can also find links to resources for caregivers on BeTheMatch.org.

Here, transplant caregivers share some of their challenges with you.

Emory_7981-small“When it’s your child, you lose your objectivity. You have to be logical and you’ve got to use your head instead of your heart. So the hardest part is disengaging from being the parent, if you can. From being the parent to being the nurse. That’s the hard part.” – Francis, caregiver for his daughter, Constance

“Balancing being my husband’s caregiver while trying to be his wife as well. It was hard to not be overprotective, while trying to let him feel in control of his life.” – Teresa

“There were many challenges, like holding down a full-time job, and taking care of our home and pets while trying to take care of my patient husband (whose doctors were 65 miles away). But you work out all of that. It’s the loneliness you feel when you lose your life and your patient shuts you out because of their personal misery. It can be a very lonely time. Good to have God, family and friends close.” – Krista

“Just so hard watching your loved one suffering. Hardest challenge by far.” – Cayce

“Everything.” – Julia

Emory_8250-small“The most challenging part of being a caregiver is taking away your emotions from the actual care giving. If you let your emotions get away from you, you will not be able to function. I think that’s the most challenging. That, and balance. How do you balance work? How do you balance your time at home? How do you balance the interference from family members? How do you balance communication to friends? It’s all about balance, especially at the beginning.” – Ramon, caregiver for his wife, Elsa

“Watching and being unable to help.” – Tami

“Fighting the fight all alone, day after day after day.” – Sue

Emory_9559-small“I was working, so I was trying to do my work from my laptop. That wasn’t easy. I was working, but in the back of my mind I know that hey, in two hours she’s got to get this medicine or that medicine. But it wasn’t that bad. It was just something we did. It’s part of being married and making that commitment years ago.” – Steve, caregiver for his wife, Patsy

“Coping with the changes along the journey.” – Irene

“Where do I start? The challenges are spiritual, physical, nutritional…hard to squeeze in moments of my own life…I am so depleted, so tired.” – Kailua

Emory_8174-small“Being a caregiver is one of the toughest things I’ve ever had to do. I’ll be honest, there were times where I would say, ‘Oh, everybody’s taking care of Bob. Who’s taking care of me?’ I will never deny the fact that it was very, very difficult. But one of the unexpected outcomes is that I gained a real sense of confidence and lack of fear. I stepped right up to the abyss and looked down in there and made it through, so that’s actually a real big gift. I never regretted that I had to be a caregiver.” – Karen, caregiver for her husband, Bob

2 Responses to “What were your greatest challenges as a caregiver?”

  1. Renate says:

    I wanted to trade places with my daughter. I did not want to see her suffer and in pain. It was hard not to get carried away with emotions and be strong all the time but I had to… for her. It was also emotionally hard to be away from my other children for almost 4 months. It was like life stood still and every day was only about survival. Thankfully there was a lot of support for us. In the end the journey was nothing but rewarding.

  2. Sidd Foster says:

    Wanting to trade places with your 27 year old child, being a good listener and the best advocate you can be, wanting to do whatever it takes to make her better and knowing when to throw in the towel as painful as that decision is….

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