When she’s feeling especially resentful of her condition, my mother will start a particular conversation that always leaves me with an odd mix of sympathy, compassion, and guilt. It typically ends with her saying something along the lines of, “I wish you had just let me die, then I wouldn’t have to suffer like this.”
Here’s what she’s referring to… About seven years ago, while I was nearly 3,000 miles away on business travel, I received a phone call telling me that my mother had fallen and broken her hip. During the surgery, they discovered her colon was terribly diseased, and that without a full colectomy her survival was unlikely. I had medical power of attorney and she was sedated, so they asked me to make the decision. Without hesitation, I told them to do what they needed to do in order to save her. My mother’s entire colon was removed, and she now has an ileostomy.
It took a few years for her to learn how to properly care for the ileostomy. She would get leakage, the adhesives left her skin raw and inflamed, and it took her a while to find the combination of product brands and best practices that finally made it less of a struggle for her. Even so, she has never truly accepted this change to her reality, and it is frequently a cause of significant distress to this day.
Her attitude this morning started gloomy because she began her day struggling with her ileostomy pouch as soon as she awoke. When she came out to the Livingroom, she told me how much she hated her ileostomy and said emphatically that her life just wasn’t worth living any more. She followed up with something that I hear all too often, “I wish I could just go to sleep and not wake up.” And, finally, she ended it by letting me know that if it wasn’t for me keeping her alive, she wouldn’t have to suffer so much.
It’s one thing to feel compassion and even sympathy for her, I do… and I know this is a healthy response. But the guilt that creeps in when she openly blames me for her daily suffering isn’t good for either of us and I do need to build better coping skills. There are many resources out there addressing this topic. I’m building a reference list of what I’m finding on my Resources page. Here’s a link to one discussion of the emotional impacts of begin caregiver that I found to be both well organized and informative: https://www.caregiver.org/emotional-side-caregiving
My research helped me to understand that caregiver guilt can take many forms. It can stem from feeling like you aren’t giving enough or as patient as you want to be with them, you don’t treat them as well as they deserve, or even feeling that you don’t care as much as you should. The feeling of neglecting family needs because of caregiver obligations is another area where guilt comes into the picture – missing your child’s sports event because it conflicts with a medical appointment, not being home or as available as you want to be for your immediate family, or just being too tired at the end of the day to be as engaged as you want to be. The guilt generated by being blamed for my mother’s suffering is the biggest part of the picture, but it really is just one part.
Of all the resources you can find, possibly the most important is someone you can share with openly about how you’re feeling – at least this is true in my case. Talking to someone who will listen and not pass judgement, someone who offers compassion, support, and encouragement can make the most challenging day much easier to manage.
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