Seeing what I wrote three years ago reminds me that my former life was definitely a ‘hero sandwich.” My current life is less complicated and I am thankful that I have music and writing to soothe myself.
Below is a link to:
My life completely turned around when I began my rediscovery of music and writing. Today, I received a message from WordPress congratulating me on the third anniversary of my blog. On my first blog anniversary, I was so enamored about my journey that I created a special post filled with pictures. Here is a link to it: ABOUT MY STORY
On this third year, I had completely forgotten about it!
I truly am a member of the sandwich generation. The year when both my parents lived with me was definitely the most challenging time I experienced as a sandwich. During that time seven years ago, my mother was ill and I also had three children that required a great deal of my attention.
At this moment, I am responsible for two teenagers. My father died eight months ago and my elderly mother is in a nursing home. There are constant challenges for me as I wade through divorce after 31 years of marriage. I am squeezed so much that occasionally it is unbearable.
I also realize that I have a different take on things. Perhaps it was because I experienced the death of my child that I have less fear to follow my convictions. I’m certain that the process of seeing my parents’ decline also brought me to a place of courage. It enabled me to end my marriage.
Two years ago, my mother fell and broke her hip; I was told she needed surgery to repair it. I refused to allow her to have that surgery for many reasons. A year earlier, I had listened to doctors who insisted that my mother have shoulder surgery after a fall. As a result of that surgery, my mother had complications and ended up on a respirator for two months. It was a miracle that she survived; she had an immune disorder and was very fragile. Her hands were always tied because she was an uncooperative patient.
Refusing hip repair surgery was a gut-wrenching decision to make. I was told she probably wouldn’t survive the weekend, and she was placed on hospice. I was very thankful that she was not in pain.
Well, not only did my mother survive, she was even able to walk again! Her hip fracture healed. Unfortunately, her dementia continued to advance and she can no longer converse. I am grateful she is comfortable; she smiles and recognizes people whom she loves.
My mother thrives because my brothers and I pay for her to have a companion at the nursing home where she is. Her companion’s name is Miriam. I have written about Miriam many times on my blog. She is very special to me.
After my mother recovered from her hip fracture, my father and I were in agreement about creating a “no hospitalization” order for both him and my mother. He was adamant that neither of them would ever suffer in a hospital again.
For my mother, it meant she would never again face the nightmare of restraints to prevent her from pulling out tubes. For my father, it gave him great relief. He was furious about the “so called” non-invasive procedures that had caused him agonizing pain; doctors had extended his life in a way he considered to be torture.
On the morning of my father’s 87th birthday last May, he was unable to be awakened. Only a week before, he actually told me that his birthday wish was to be dead. I followed my father’s instructions and did not allow his nursing home to transport him to a hospital.
I didn’t realize that my father’s wish was such an aberration. It was very clear that the nursing home preferred to send my father to a hospital to die.
My goal was to keep him as comfortable as possible in his bed at the nursing home until his death. It was a huge challenge because there was great resistance to providing him with adequate pain medication. I wondered why it had to be so difficult.
“My heart pounded as I waited”
I was shopping and loading my car up with groceries when Miriam called me. Her voice was filled with terror when she said, “Judy, the nursing home just called 911!”
I quickly hung up and told her I’d call her back. I immediately called the charge nurse at her facility and was placed on hold to wait for more information. Questions swirled through my mind – why hadn’t I been notified sooner? What had happened to my mother’s “no hospitalization” order? My heart pounded as I waited.
Only the day before, my mother and I had gone out to lunch and she seemed fine. As I waited, I pictured the charge nurse running to stop the paramedics from transporting my mom to a hospital.
It actually happened. The paramedics were instructed not to transport my mother just as they were getting ready to take her to an ambulance.
It turned out that my mother had a violent coughing spell. It caused her to vomit a small amount. Her vital signs dropped after that, although she was fine a few moments later. But the charge nurse was new; she had already called 911 because she panicked.
It turned out that my mother’s “no hospitalization” order was a surprise to many of the staff there.
I had no idea it was so rare. For me, it was a no-brainer. Hospitals were torture chambers for both my parents. Even my mother-in-law had begged me to help her get out of a hospital shortly before her death.
The charge nurse came back on the phone to reassure me that she had stopped the paramedics. I grilled her about why I hadn’t been notified of a problem sooner. I was upset and tried to understand, but it wasn’t easy.
I was still sitting in a parking lot with groceries in my car. I decided to drive to her facility. As I pulled out of the parking lot, Miriam sent me a message. She said the paramedics had left; my mother seemed fine and was sleeping.
I ended up driving home and wasn’t sure what I’d do after that. I was exhausted and had a lot of groceries to put away; all of the ice cream had already melted. In only a few seconds, I went from enjoying my day to feeling quite stressed.
This was a perfect story about my life as a sandwich. I attempted to use humor to dispel my aggravation because I was relieved that my mother was okay. Later in the day while I was in the shower, I received a voicemail message from the head nursing supervisor. She told me she was very sorry and it wouldn’t happen again.
“The Next Day”
My story might have been over at this point. But it is not. The next day, I took my mother out to lunch again with Miriam. My mother looked fine and I celebrated that she was still alive and not in pain.
But Miriam needed a lot of reassurance from me. She encountered many opinions from the staff at the nursing home. She had no idea how to respond to what she had heard and was quite worried.
It upset me so much that I felt the need to write.
This is what “no hospitalization” means to me:
It means that I don’t want my mother to needlessly suffer. But her ailments can still be treated. It is not the same as a “do not treat” order.
It does not mean that I want my mother to die.
It does not mean that I believe her life is unimportant.
I simply don’t want her life extended in a way where she would suffer. Especially with dementia, there is no purpose for her to ever be intubated again. There is no hospitalization if she has a stroke or heart attack.
If she broke her arm, I would probably allow for treatment at a hospital. The nursing home would discuss this with me first. Currently, my mother receives monthly gamma-globulin infusions that extend her life.
When this happened, Miriam listened to a lot of ignorant statements from the nursing home staff. She told me they discussed the situation aloud in front of her.
Here was what she heard:
“If Shirley has a no hospitalization order, why does her daughter complain to us when her mother has mouth sores or red eyes?”
“If Shirley has a no hospitalization order, why does she receive gamma-globulin infusions? What is the point?”
“If Shirley has a no hospitalization order, why does her family provide a companion?
Thankfully, I have a blog where I can freely express myself.
I had courage when my mom broke her hip. Now I have courage to follow what I believe in. I am shocked that having this order is considered something rare and “outside the box.”
There are those who believe in spending countless dollars to extend the suffering of terminally ill patients. I am proud of my willingness to go against medical professionals who believe they know what is best for my mother. I am so sorry for elderly people who do not have an advocate!
I have chosen my path and even if no one at my mother’s nursing home understands my reasoning – I stand by it.
I love my mother and celebrate her quality of life.
© Judy Unger and http://www.myjourneysinsight.com. 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.
Tags: "sandwich generation", Advocacy, Aging Parents, broken hip without surgery, Caregiving, dementia, elderly directives, end of life decision, father's illness, inspiration, mother, mother daughter relationship, mother's illness, no hospitalization order, nursing homes, refusing to go to a hospital