My mother, who had a second heart attack when she was 73, lived with a debilitating chronic illness, congestive heart failure, for the last 13 years of her life. She died from complications from this disease Thursday, Oct 2. She had the first heart attack at age 60 and recovered completely. The second one left her in a state of constant fatigue.
I hadn’t planned to write about this – I wasn’t going to post until I could get my head back on my work. But then I realized that I write to help others who live with chronic illness. True – usually it’s about career. But in the end, it’s all the same stuff. It’s about how we “show up”.
I must admit that I struggled with the way my mother faced this illness and that was painful for me. I imagine, though, that I’m not alone in this experience. My clients tell me how difficult it is when others judge their behavior and decisions. I know what it’s like to be judged and be the judger and neither feels good.
My mom was a very successful professional (she was my role model!) who worked extremely hard her entire life at everything she did until life threatening disease transformed her. With this illness, she became housebound. She put all of her extraordinary will into finding a doctor who could cure her. Although she couldn’t admit it, she felt sorry for herself and that often left her feeling even more isolated her from others.
I share this because it was hard to watch my mother make choices that I found frustrating and alienating. I found myself judging her when she wouldn’t push herself to join family events. I became annoyed when she ignored suggestions that she stop going for tests that only tired her and led nowhere. I wanted to shake her when she responded to pain and fatigue with fear. I became distant and remote when she most needed my support.
Don’t get me wrong. I don’t “blame” myself for responding as I did – I honestly did the best I could do. Nor do I look for sympathy. This was a small burden in the scheme of things.
But my hunch is that that I’m not alone here – watching someone I love live with illness — and not agreeing with her choices. While she was alive, I wished I could do something to transform how she viewed herself and bring back her old determination and grit. I believed that her life could have been so much more in those last 13 years. We didn’t share that desire.
My mother’s response to illness — and now her death — has strengthened my resolve to live each moment, no matter how I feel, as if it really might be the last.
As Randy Pausch said in his interview with Diane Sawyer, his bucket list would include one thing: Time.
Please share — Do you have to remind yourself to live your life, in whatever way you can, even when you feel horrible? What do you do for yourself when others judge how you live your life with chronic illness? Or what is it like for you to judge how someone else lives a life with CI?
Rosalind aka cicoach.com
Leslie says
Hi Rosalind,
I’m so sorry to hear about your mom. I’m sending my thoughts and sympathies from Michigan and hope that you are doing okay. Your questions at the end of the post really resonated with me, as this seems to be a constant struggle for my lately – trying to make the most of things while trying to get those around me to understand just how hard things can be. Anyway, I appreciate your transparency with your readers, for being so willing to share at such a difficult time.
Leslie
Rosalind Joffe aka cicoach.com says
Hey, Leslie. Making the best of life is never easy, whether it’s because of illness or anything that’s difficult. It’s a constant mental struggle and you want to get as much support in this as you can possibly find. I’ve found that it’s critical to look for things that change the mood and work with that. Does your blogging help? Your blog is personal and I hope that it gives you support.
Christina Gombar says
Rosalind — I’m so sorry for your loss, and thanks for sharing your story with us. I’m wondering how much depression played a factor in how your mother dealt with this chronic illness that took up the last several years of her life.
Most people I know who’ve come down with a life-altering or threatening illness are also hit with major depression — often physically induced. I’m of the generation who gets therapy and tries pharmaceuticals to pull myself out of the rut. Neither cures our life situation, but over time, both can help us cope with it. I’m wondering if your mother, being of an older generation, was resistant to getting the kind of help that could have revived her spark a little?
Rosalind Joffe aka cicoach.com says
Christina – Honestly? My mom was pretty sophisticated way and used pharmaceuticals but as we with CI know, these drugs can interact with other drugs we take and can also give us side affects that make us even more sleepy or sick feeling. Heart meds and anti depressants/anti anxiety drugs are tough to modulate — Anyway – I think fear is a tough thing to overcome and old age in which your loved ones are dead and there’s not much to look forward to makes as CI even more difficult to bear.
Now I’ve really gotten off the track of what I write about and feel “expert on” — these are just my observations.
Maria says
Rosalind, so sorry to be this late in finding out about your loss. Wishing you some peace in your heart and thank you for sharing your thoughts – about your mom and through your blog. Your genuine contributions are very appreciated as always.
Take care~