Can't say goodbye

I don't want to say goodbye to my mom. But the inevitability remains. She and I were diagnosed with cancer this summer. Mine is treatable with a potential of complete remission. Mom's is terminal. Her surprising discovery has made the end of this summer and start of fall an emotional, jarring and faith-challenged epoch.


In August Mom had a 'spell'. I rushed to her to Abbott Northwestern Hospital's emergency room where she was admitted on the suspicion of her having a heart attack and stroke. What they found was she'd suffered both, plus her gout and other metabolic troubles were probably set off by a body riddled with small-cell cancer.


Say what? Her lungs, lymph nodes, liver, kidneys are peppered with it. My mom is part of that generation that doesn't rush to the doctor over one ache or pain. She consistently fought my husband and I when we suggested a physician see her. Her winning barb that successfully ended our hen pecking was over the potential cost for her healthcare. "How do you know if they'll cover my visit?" she'd push back. We didn't. I'd offer to make the calls to determine her coverage and was consistently rebuked. Who do I think I am? She can take care of herself, thank you.


And here I am now, less than three months since we last had that recurring conversation. I'm in charge of coordinating her care team. I'm managing her debts better than my own; however, my experience with the costs, twists, terms and turns of the business end of health care has scrambled my sanity. The process of death and dying emits a smell like twice-warmed vomit. I gag at this system. I can't imagine what a senior citizen without family, without a friend with time to spare...how can a person that's sick get through the insurance and healthcare labyrinth. How can they get what they want, when they need it?


Ma' Bell (mother's pseudonym) was treated with chemotherapy at ANW and released to a nursing home for rehabilitation. The home was chosen because they could provide 24-hour nursing care as well as provide physical and occupational therapy. She could have received such on an outpatient basis; however, my own surgery forced our decision to accept temporary, residential rehab.  Less than five days after her release to the home, mom bounced back to the hospital. She was diagnosed with aerosolized shingles, a very contagious form of this virus. She was a chicken pox carrier, and subsequently was placed into one of ANW-ICU's positive/negative, pressurized air room for 5 days. A few days after isolation she was released back to the nursing care facility.


By mid-September 2009, an 80-year old woman with several degrees, a retiree from two successful careers couldn't complete her sentences. Ma' Bell who's slept with news radio for more than 40 years didn't watch the news. She couldn't stand, nor control her bowels, bladder. Due to circumstances beyond her control, she was deemed uncooperative in her rehabilatative healthcare plan and scheduled for release within 2 days from the nursing home. The health team, whom I'd been in close, constant contact for her entire stay were ready to boot mom and we didn't have anything ready for her at our home.


It's Sunday, October 4. Mom hasn't truly eaten in days. She's ready to go. It's sad to witness her rapid decline. I haven't seen her since Thursday. I've talked to her on the phone since, but she can't operate the receiver. Our home's now 'ready.' With the help of friends, our living room's got space for a hospital bed. But we can't afford to pay for a new one.


What are we to do? Give up. No more palliative chemotherapy, rehab for mom. Her healthcare directive states that we are to do whatever is medically possible to sustain her life.  Intubations and IV fluids were specified; however, because she needs to come home she can't have that.


The only way this transition can happen is if we accept the inevitable and select hospice care instead. They will provide equipment like a bed, lift and commode. We all know she's got end-stage cancer; however, most palliative treatments are not permitted once hospice is involved.  Hospice offers professional monitoring by staff but it's up to us to provide her primary care and to see her through to the other side. I'm praying that she makes it home this week. We are religious and we utilize philosophy, science and social norms to guide us toward the end of life. I want her to die at home. She is and always will be an embodiment of truth, beauty and dignity. And I love her.

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    Rachel Dykoski's picture
    Rachel Dykoski

    Comments

    Well wishes

    I may have this wrong, but I beleive that hospice's philosophy IS all about palliative care.

    That is their deal.  It's true that one cannot be on hospice and receive palliative restorative care, but then that isn't all that palliative care is about. Below is one of the local hopice's missions:

    Their " mission is to enhance the quality of the lives of our patients and their families by providing respectful care based on maintaining dignity, alleviating physical, psychosocial and spiritual suffering, advocating for fundamental rights and affirming the sacred value of life."

    I have been fortunate enough to have been  with both my parents through their end of life journey with the help of a hospice group. Having them backing us with whatever comfort measures we needed allowed my parent's the freedom to do the work at hand.  I can't say enough good about hospice.  I wish you and your mom peace and calm through this difficult time.

    Wishing you strength and courage

    I wish Rachel's family well with home hospice - for our family it was a difficult, exhausting and also rewarding and love-affirming process. While it is true that we were ultimately responsible for my stepfather's care, we were guided by professionals along each step of the path, and he received very effective palliative care. I hope that her mother will receive the same level of comfort and care.

    Like her mother, our Bill was also the embodiment truth, beauty and dignity - in caring for him through the end of his life we all came to understand those three qualities in a deeper and richer way.

    Tomorrow I will accompany my own mother back to her oncologist for the results of her most recent post-colon cancer testing, so Rachel's article brought both the past and a possible future to my mind.