Tom’s final entry chronicles the implications of his parents’ choices regarding End-of-Life planning. While his dad is on the right track and has made strides towards getting his matters in order, his mom has taken a turn for the worst—unfortunately with no plans in place.
Last week I talked about how I was able to inspire my aging father to develop an End-of-Life plan. This week I want to tell the story of my mother and what can happen when you get caught in a crisis with no plan at all.
As I recounted earlier, Mom got sick the day after she retired and has been seriously ill for the past five months. She agreed to see a Western Doctor four months ago. The doctors thought it could be cancer, congestive heart failure, or both. They wanted to run a CT Scan, but she refused.
Mom went home to treat her illness holistically. She was in pain all the time and could barely get out of bed. She stopped being herself. She lost a lot of weight and could only take sips of broth daily. It was heartbreaking to see this vital woman who raised me deteriorate before my eyes.
The more that my siblings and I begged her to see a doctor, the more adamant she became about not seeing one. She’s been a lifetime advocate of alternative medicine and she did not change when faced with her first significant illness.
She has always been a fighter and we joked that she would live to be 100. Maybe that’s why it took me so long to realize she might actually pass away from this illness.
Once the realization hit, I gently mentioned to Mom that if she truly wants to avoid Western medicine, she should prepare her Living Will or Advance Directive. I said, “A person without a Living Will or Advance Directive can’t control their own treatment if they become ill and can’t speak for themselves. Doctors will pursue aggressive treatment to save you if there is no documentation of your wishes.”
When I asked Mom what paperwork she had, she said she has no Will, no Advance Directive, no Estate Plan, and no Power of Attorney. When she kept avoiding the topic, I could see the writing on the wall. Who would end up making the decisions for her if she ended up in the hospital? I began to fear the choice would come down to a doctor or a judge or even me. Would she hate me forever if I allowed them to use Western medicine on her and it turned out she was not dying? I was prepared to take that chance.
Meanwhile, I kept visiting Mom to check on her and continued to make my case. I was calm but persistent. “Mom, if we can just get your Advance Directive we can avoid a crisis.”
Mom said no. She banned us from mentioning doctors, Wills, hospitals, or pain medication. As she got more ill, she continued to see an array of naturopaths and acupuncturists. One by one they told her to go to the Emergency Room.
Mom would not give in. She stopped seeing her holistic doctors and traveled to her native Texas with my Stepfather to see her favorite Chinese acupuncturist.
Mom stayed with family members while getting treatment. When it became “too stressful” at one family’s home, she would move to the next relative’s home.
I received frequent, urgent calls from my Texas relatives saying, “Your mother has to go the hospital.” One night my aunt called an ambulance for her but she refused to get in. We could not do anything, we just had to watch it all play out. I told my family, “We can’t force her to go to the doctor if she doesn’t want to.”
Then one day she moved to an extended stay hotel. She immediately got a foot infection that looked like it would turn into a staph infection. My Stepfather finally took action. Amazingly, the foot infection was the reason they finally went to the hospital, not the litany of other symptoms that have been going on for months.
When Mom was admitted to the hospital, the truth was finally revealed.
She has congestive heart failure. Her heart is functioning at 20% of its capacity. She has a large mass in her lungs, which may be cancer. She has a blood clot in the artery between her heart and her lungs. She has severe pneumonia. Her liver and her kidneys are not functioning properly. My Stepfather called me from the hospital and said, “The doctors are wondering if your mother has an Advance Directive or Living Will in place. I told them that she did not, maybe we can get one together when we get home.”
All the conversations we had about preparing for End-of-Life came rushing back. I felt like a failure for not forcing her to create these documents a month ago. But I knew in my heart that no one has been able to force Mom to do anything in her life.
The family was beside themselves she had waited this long. We speculated about how many of these health issues could have been prevented – or successfully treated – if she had gone to the hospital earlier?
Our family’s frustration with Mom and my Stepdad quickly dissolved when Mom’s health declined even further. The second day in the hospital her heart was so weak she had to be put on a heart-regulating machine, use a breathing mask and a feeding tube.
My Mom said the breathing mask made her claustrophobic and she kept pulling it off. This led the doctors to give her sedatives to put her into a forced sleep state.
As I write this from the waiting room of a Texas hospital, my Mom is in the Intensive Care Unit in critical condition. Unless a miracle happens, she will likely pass away here.
Mom’s worst-case scenario has come true. She is no longer in control of her fate. She is being treated by Western Doctors, which is not her wish. If she wanted to pass away in hospice care, she has no way to communicate this to the doctors. Not now. My Stepfather is pursuing all aggressive treatments to keep her alive.
The takeaway from my experience is that every parent is different and not every story will have a happy ending. Some people will be open to making an End-of-Life plan and others will deny it until their final breath.
If you want your aging parent to have control over their final days, sometimes you have to be the parent and make them take their medicine, eat their vegetables, and make an End-of-Life plan before it is too late.
The truth is every one of us will leave this earth one day. No one can change that so why deny how you want to spend your last days? In my experience there is nothing more heartbreaking than seeing your Mom hooked up to life support, when you know this is the last place she’d want to be.
In closing, I feel like I succeeded with Dad and failed with my Mother. However, I know I tried to do the right thing and honestly did the best I could. And as children of aging parents, that is all you can do.