This is the second installment of my journey with my mother, the hospice care conversation and the health concerns related to advanced illnesses. In writing this, I hope that more people start the hospice care conversation with their loved ones earlier.
EIGHT YEARS LATER
Over the past eight years, I’ve watched, or as I like to say, participated in, my mom’s decline. And, it’s hard to love someone and watch their health deteriorate and refuse extra assistance. She did not want to talk about her complicated advanced illness. After Ben died, she put off changing the will and so many other things. She was not ready mentally for the extra care; however, her body was not cooperating, and she needed the support that palliative and hospice could provide.
During this time, she has dwindled down to about a size six or less with four major acute hospital stays – each leaving her in a more comprised state of health. Imagine a jagged, saw tooth, every acute episode creates a new baseline, which is lower than where it was before.
My mom has chronic obstructive pulmonary disease (COPD). COPD can include chronic bronchitis and emphysema. This disease makes it hard to breathe and is the third leading cause of death in the United States.
For people with COPD, one of the indicators for hospice are frequent trips to the ER, and many COPD patients are called frequent fliers.
Probably about four years ago, my sister began to take care of our mom as a full time caregiver. If she hadn’t, our mom would have had multiple trips to the hospital instead of every two years with two week stays – alternating between Christmas and Memorial Day holidays.
What could I have done to help this situation over the years? Having more conversations with my mom was definitely not the way to go. She did not want to listen to her daughters’ advice, even if to be in a wheelchair to go out to eat or shop. For her, it was simply pride.
Mom has mental capacity and can still make her own decisions. She knew she needed help – a lot of help with certain daily activities. She would get winded walking from the chair to the kitchen, porch or bathroom, and the house isn’t large. The fact remained that she wasn’t ready mentally for the additional support.
2016 – 2018 | HEALTH CONCERNS RELATED TO ADVANCED ILLNESSES
Let’s fast forward from 2016 to May 2018. mom started to have pneumonia Memorial Day weekend but refused to go to Urgent Care. So, the day after Memorial Day my mom had a doctor’s visit, which ironically was the anniversary of my father’s death. On the way to her doctor’s appointment, her breathing became worse, and instead of going to the infusion center, my sister took her straight to the ER. This last acute episode lasted 10 to 11 days in the hospital.
You know it’s been a long time when the cafeteria staff know you by name, and the café staff asks you if you are an employee and tries to give you the employee discount. Those two weeks were an emotional blur, and I now realize that I should have been writing this while we were at the hospital. So, I will keep it short.
During her stay at the hospital, we learned several things about her condition. Her lungs are shot, and there is a mass stemming from her thyroid that grew back overtime since 1974. A biopsy was not possible due to the condition of her lungs and the possibility of her lung collapsing, which would be fatal. So, to see if the mass was cancerous, the doctors found an old MRI from 2003 that showed the mass there. They compared both scans and determined that they looked pretty similar, so they determined it wasn’t fast growing and it would do more harm to treat it than not.
The real problem is that the mass is lodged by her windpipe and presses against her esophagus (food pipe) causing issues when she eats. At that point, my mother said to the physician, “Why are we going to keep doing tests when we know that we’re still going to have the same outcome.” At that point, I think we knew where mom was in her journey, and she did too. Actually, she had probably known for a long time and would not share her thoughts with us.
Every month, I will be writing about my journey with my mother in the hopes that this will help caregivers and their loved ones come together to make the best decision for them.
My next blog will be on the topic of my mother being ready to receive the Hospice care conversation. Stay tuned.
If you have any questions about WV Caring’s hospice care services, want to talk about having the hospice care conversation or have health concerns related to advanced illnesses, give us a call at 1-866-656-9790.