Not For Wussies
Dying is not for wussies.
My mom passed away yesterday. Her decline was quite rapid due to complications from scleroderma, an autoimmune disease. The immune system attacks its own tissues, damaging the soft tissues such as skin and internal organs. Scleroderma is not well understood, and there is no known cure. It doesn’t affect all people in the same way. She was diagnosed ten years ago, and has suffered external symptoms for much of that time, mostly a hardening of the skin around her face and fingers. The last few months the disease started to affect her internal organs as well.
Mom was admitted to hospital on December 1st with likely a touch of pneumonia. Up until that time she lived on her own, and being independent was an important aspect of her quality of life. She wasn’t one to share her health concerns with a lot of people, even family, so when she said it was nothing to worry about and she’d be home in a couple of days we didn’t worry.
A few days went by and she wasn’t going to be discharged. Eileen and I had to shuffle things around to be able to come visit her so there was a couple of days delay until we could arrive. By the time we got to Michigan from Vancouver she was in intensive care due to a partially collapsed lung. The tissue in her lungs was eighty percent useless, fibrosis caused by scleroderma. There was a problem in her throat that didn’t fully close the bronchial passageway and she had been literally inhaling food and drink, giving her coughing fits. Again, this is most likely from complications caused by scleroderma. Her digestive tract wasn’t absorbing food correctly either, leading to malnutrition and a weakened system.
She received excellent care from a battery of specialists, but the damage was irreversible and continuing. She tried to fight, but it was a fight she could never win. In the time span of four weeks my mom went from independent living, looking forward to a family Christmas, to facing her own end. She bravely opted for hospice care at home with family.
The last seventeen days have been the worst of my life, but I wouldn’t want to have been anywhere else. I’m glad I was there for her. And I can definitely tell you, dying is not for wussies.
Bob,
Kim and I send you our condolences. I agree – staring at death is one of the hardest things to do. It’s no wonder we try not to think about it too much.
We’re going to make a donation to the Scleroderma Foundation in her memory.
Jay
Comment by Jay Zipursky — December 25, 2008 @ 6:18 amHi, Bob!
I met you many years ago when you were just a tike. I’m your mom’s cousin — Emily’s daughter (Carl’s brother). Barbara kept me informed about your mom and I want to express to you my complete sympathy.
My Ma passed away in February. We had the blessings of hospice for only a few days and they helped Ma pass like she wanted — without pain or life heroics. She had requested this since 1968 when her own mother passed. You are absolutely correct that dying is NOT for wussies. It’s hard work.
Take care of yourself and cherish your memories.
Linda
Comment by Linda Stoetzer — December 25, 2008 @ 10:55 am