My Aunt Jean was born in 1926. She was a member of the Silent Generation –the group that was born between 1925 and 1945 – immediately after the Greatest Generation. As a child during the Great Depression, she was often told, “Life is hard for everyone. Keep your problems to yourself and don’t complain.”
Upon graduating from high school, she passed a civil service test. A few days after her 18th birthday, without telling her parents, she got on a train in Wichita, Kansas and traveled to Washington, DC where she went to work for the federal government. She embraced the slogan, “Loose lips sink ships,” and she took her vow of silence as seriously as a monk.
She progressed in her career and advanced to a position in US Army Intelligence. Even after she’d been retired for more than 35 years, if someone asked her what she’d done for a living, she would either say, “I won’t tell you,“ or she’d scowl and ask, “Who needs to know?”
What You Need to Know When You Agree to Care for a Family Elder
Jean was my mother’s only sister and she did not have children. After her husband died, I invited her to move to Oregon so she could be close to me and my family. The day after she arrived, she fell and broke her hip.
Standing in the ER with her, unable to answer questions like, “Who is her primary physician?” “What kind of insurance does she have?” “Does she have any allergies?” “Does she have an advance directive?” I realized I had made a commitment to take care of her through the end of her life, and all I really knew about her was that she was feisty and independent and that she loved good steaks and strong drinks.
At age 80, Jean’s broken hip could have been a disaster, but the with the combination of aggressive physical therapy and her fierce determination, she recovered. Once she was mobile, I asked her to provide me with the information I would need if she became incapacitated or died.
This was a discussion she did NOT want to have. After months of repeatedly asking her to sit down with me and my husband and tell us what we would need to know if something happened, she finally agreed to go out to lunch with us.
I had given her my “Ducks in a Row” workbook, which was filled with multiple comprehensive forms that would have provided me with the information I would need to manage her affairs, but she refused to fill it out. Instead, she gave me a key to her safe deposit box and a baggie with half-a-dozen index cards on which she had listed her Social Security number, her Medicare information, the name of her financial planner, and her bank account numbers.
Upon my urging, she did agree to meet with a friend of mine who was an attorney so she could get her end-of-life affairs in order. (She did not invite me to go with her, and she didn’t share her wishes with me.)
Ten years passed. We celebrated Jean’s 90th birthday on September 29, 2017. She said it was the best birthday celebration of her entire life. A month later, I received a call from the manager of the active retirement community where Jean lived. He said she had needed help walking to the dining room for breakfast. Her tablemates were alarmed at her appearance, and when she seemed disoriented and started dropping her food, they told the manager to call me.
I was there within 15 minutes. Against her wishes, I drove her to the hospital. She was diagnosed with pneumonia, admitted to a room, and put on IV antibiotics.
I stayed with her throughout the day. As I was getting ready to go home for the night, her heart rate shot up to 180 and then dropped suddenly to 40. There was a flurry of activity as the nurses prepared to move her to the cardiac wing. I was concerned, but knew our hospital had a state-of-the-art heart unit. After she had gotten settled into her new room, I went home feeling confident that she was in good hands and that she would start improving rapidly.
Saturday morning when I got to her room, she was alert and hungry She was cranky but cognizant. At one point she scowled at me and said, “I can’t believe I let you bring me to the hospital.”
I said, “Are you mad about that?”
“Yes! They’ve got a real racket going here.”
I said, “What do you mean?”
She said, “They are doing a lot of unnecessary tests so they can run up my bill.”
I said, “Jean, that’s not true. You are very sick, and they are doing everything they can to make you well.”
Throughout the day, since she couldn’t eat or drink anything, I swabbed her mouth with damp sponges on sticks that looked like lollipops. The moisture on the sponge helped ease a little of her discomfort. She appeared to be stable at bedtime, so I went home.
What Happens When a Patient Doesn’t Have an Advance Directive?
Sunday morning when I arrived at the hospital, Jean was sleeping. The nighttime nurse, motioned for me to join her at the nurse’s station. She asked if I had a copy of Jean’s advance directive. She told me that Jean had experienced several A-fib episodes during the night and explained that without an advance directive, the staff would be obligated to do everything within their power to revive her if her heart failed.
The realization that she might not recover was stunning to me. I had fully expected to move her into rehab and then into an assisted living facility. The nurse helped me understand that Jean’s chances of getting well were limited.
I knew Jean would have a copy of her advance directive in her apartment. The idea of going there without her knowledge or permission made me uncomfortable.The minute I opened the door to Jean’s apartment, I felt like I an intruder. I couldn’t betray her trust, so I walked out and drove back to the hospital.
When I got there, it was 7:30 a.m. I decided to call Tom*, Jean’s attorney. Since it was outside of Tom’s normal office hours on an early Sunday morning, I called several other people to get in contact with him, hoping that I wasn’t disturbing anyone at such an early hour and that they’d understand the situation. I wound up getting in contact with Tom later that day.
Since Jean’s records were ten years old, rather than being accessible digitally, Tom said he would have to go to the office and get them out of paper storage. I did not tell him it could wait until Monday. I said, “Thank you. I owe you big time.”
Tom faxed the advance directive to the hospital mid-morning.
Around noon, the doctor came in to see her. He said, “Jean, you have two serious conditions––pneumonia and heart failure. We’re going to do everything we can to make you well, but if your heart stops, I need to know if you want me to put you on a respirator.”
Her eyebrows went up, and she said, “I don’t know. What would that entail?”
He said, “If your heart stops, we will do CPR, which involves a series of chest compressions. It will be painful, and we will most likely crack some of your ribs. It’s doubtful that you would ever recover to the point that you’d be able to go home to your apartment and live independently. You would need to go to a nursing home.”
She scowled and said, “I don’t want that.”
He then asked, “So Jean, can you tell me what you do want?”
She looked at him defiantly and said, “I want you to make me well!”
He nodded and said, “I’ll do my best.”
My husband Alex and I followed the doctor out of Jean’s room. He explained that he had just lost his 90-year-old grandmother. He said that sometimes medical treatments for older people are akin to torture.
I said, “I don’t want that for her. She’s upset with me for bringing her to the hospital. If she ended up in a nursing home, it would be a living hell for her!”
The doctor reviewed her advance directive with me. Jean had not been specific about her wishes, but she had given me the authority to make healthcare decisions on her behalf––unless she was cognizant and her wishes were different from mine.
Making Difficult End-of-Life Decisions for a Loved One
I stayed with Jean until bedtime, and then went home and fell into an exhausted sleep. At 11:00 p.m. the phone rang. It was Jean’s doctor. She said, “I wanted to let you know that your aunt’s heart is failing, and I’m calling to see if you want us to operate and give her a pacemaker.”
When I asked if a pacemaker would allow Jean to recover and go back to living independently, she said, “No. She will not be able to do that. She will need to go to a nursing home.”
I said, “This is hard. Jean is not ready to die. But I believe with all my heart that being confined to a bed or a wheelchair in a nursing home would be a fate worse than death for her.”
Then I asked the doctor if she would put in a pacemaker if the patient were her mother or aunt.
She said, “I would not.”
My heart was heavy when I said, “Then let’s not do it.”
At 4:30 a.m. I got another call from the hospital. It was Jean’s nighttime nurse. She said Jean had tried to get out of bed at 3:00 a.m. When they’d gone in to ask if they could help, she said, “Yes. Get my bill ready. I need to check out.”
They coaxed her back into bed, and shortly after, she suffered a stroke. Her nurse asked me if I wanted to transition her into comfort care. I told her I would be there in 20 minutes and we could do it then.
The nursing staff made sure Jean was receiving enough morphine and anti-anxiety medication to ensure she was not in pain. In the early morning hours, I held her hand and talked to her, trying to provide comfort and reassurance. My husband and my children joined us later in the day, and we were all by her side when she took her last breath at 6:00 p.m. Monday evening.
I was stunned and deeply saddened by Jean’s death. She had been a huge part of our lives for 10 years. At the same time, I was incredibly grateful for the nurses and doctors who helped me understand the importance of locating her advance directive. Without it, I would not have had the authority to make the decisions about her treatment, and every person on the medical staff would have been legally obligated to do everything within their power to keep her breathing.
That said, the decisions I had to make were not easy, and I didn’t make them lightly. Jean did not die peacefully. She wanted to live. She believed that if she could just get out of the hospital and go home that she would be just fine.
Did I Make the Right Decision?
I will never know if the decisions I made for Jean were the ones she would have made for herself. Lacking clear instructions, I chose for her what I would have chosen for myself.
My husband and I have spent the last three weeks updating our trusts and advance directives. We have written very specific guidelines so our children, who are our healthcare representatives, won’t have any doubt about our wishes regarding life support, tube feeding, and other medical treatments that might extend our lives without regard for the quality of our existence.
Why You Should Make Your End-of-Life Decisions Now
I had lunch with my daughter after we completed all of our documents. I told her I loved her and trusted her, but I didn’t want her to treat me like her dog.
She exclaimed, “Are you kidding? My dog has a great life!”
I said, “Yes, but I have witnessed how all of you kids have let your dogs suffer at the end of their lives because you couldn’t bear to make the decision to let them go. And as much as you love your dogs, I believe you love me more — and I think it would be tough for you to make the decision to let me go.”
She said, “You’re right. Thank you, Mom.”
There isn’t anything fun or easy about planning for disability and death, but if you complete your advance directive while you are healthy and thinking rationally, I believe it could end up being one of the most generous and loving gifts you will ever give to your family.
* Names have been changed to protect privacy.
Elaine K Sanchez is the author of the tender, gritty, and unflinchingly honest book, Letters from Madelyn, Chronicles of a Caregiver. Her free Caregiver Survival Course is available on her website. She frequently speaks at caregiving and eldercare conferences across the US. Click here for Elaine Sanchez’s speaking schedule to see if she will be speaking in a community near you.