What I Wish I’d Done Differently as a Caregiver

AARP’s family and caregiving expert reflects on a traumatic time of caring for her sister and parents and ultimately losing her mom

Amy Goyer,

AARP

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Published November 05, 2025

Amy Goyer and her parents: Robert and Patricia Goyer.

Courtesy Amy Goyer

When I was caregiving for Mom, Dad and my sister while working full-time and maintaining a long-distance relationship, I felt pulled in every direction. I was constantly reprioritizing to keep everything afloat. Yet, looking back, there were times when I wish I had chosen to do things differently — a feeling familiar to all caregivers.

The week when Mom passed away was one of those times. I will always wonder, If I had done something differently, would she have been with us longer? I’ll never know, but I learned and grew from the experience.

At the time, I left my job to consult allowing me to move from Washington, D.C., to the Phoenix suburbs to care for my parents. Mom had dealt with the effects of a stroke 20 years earlier, and Dad had developed Alzheimer’s disease. I was also power of attorney for my sister, Karen in Maryland who had serious health problems. I juggled it all — sister, daughter, caregiver, advocate, consultant — racing between hospital rooms, work responsibilities, and family milestones, feeling torn and often inadequate.

Things intensified when Karen had surgery to remove a pituitary tumor that had caused Cushing’s syndrome. She developed blood clots and other complications, and I flew in right away to advocate for her through a slow recovery . It was hard to leave before she moved to the rehab facility, but I had a work commitment and Dad’s birthday coming up.

Dad’s 90th birthday

Dad was thrilled to reach 90. He loved parties, and it broke my heart that we didn’t have enough people nearby to throw him one. But instead, we planned a Saturday picnic and a birthday dinner on Monday.

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Outings took a great deal of planning — Mom in her wheelchair, Dad with Alzheimer’s and vision loss, Dad’s service dog, Mr. Jackson. The picnic was pure joy. Dad loved being outdoors, and I remember Mom pointing out the gorgeous sunset on the drive home and later beating us all at Uno. My sister in Maryland was feeling better; I finally let myself breathe.

Still, I noticed Mom seemed weaker than usual. She’d just recovered from a urinary tract infection (UTI) and had physical therapy, so I was concerned. I planned to call the doctor on Monday morning to get a urinalysis.

We spoiled Dad with presents on his birthday morning. Mom glowed while handing him a special bolo tie to add to his collection. Before I realized, it was dinner time, and I hadn’t called the doctor. Dad really enjoyed his birthday dinner with a few friends; he was always happiest when Mom was with him.

Mom’s condition worsens

On Tuesday morning, I had a doctor's appointment. Afterward, as I drove to my office, planning to call Mom’s doctor, my phone rang. Our caregiver said Mom was so weak, she couldn’t get out of bed. I told her to call 911, and I headed straight home, following the ambulance to the hospital. After a seven-hour ER ordeal, Mom was diagnosed with a UTI and started on intravenous antibiotics.

Late that night, she was moved to a hospital room where I stayed with her all night.The next morning, I went home to shower and check on Dad, and asked my concierge friend, Debbie, to sit with her. When I returned, Debbie was worried — Mom “didn’t seem right,” and the nurse hadn’t acted on her concerns.

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Mom spoke with me when I arrived and smiled brightly at the flowers I brought. A doctor came in and told me she was in sepsis, but seemed unconcerned, noting that they had adjusted her antibiotics. Mom at age 87 had survived decades of UTIs, chronic pain, surgeries and infections — including sepsis. I expected the usual: treatment, regained strength and return home for rehab.

Then Mom began breathing strangely. I called for a nurse, but they were slow to respond, saying they needed to discharge another patient first. A respiratory therapist finally came and tried a pulse oximeter, which showed extremely low oxygen levels. She decided the oximeter must be broken and left to find another one but never returned.

I kept trying to rouse Mom, asking if she was OK. Frustrated, she opened her eyes and annoyedly told me, “Yes!” and then went back to sleep.

Moments later, she suddenly sat upright, staring into the distance, reaching out with a rapturously happy look on her face. I tried to get her to look at me, but she was very stiff — I couldn’t even turn her head toward me.

Then alarms sounded; nurses rushed in and started hooking her up to machines and whisked her off to the intensive care unit, intubating her. That was against her wishes and her Do Not Resuscitate (DNR), which had been on file in that hospital from previous stays, but she hadn’t been through the formal admissions process yet this time.

Two days later, family, friends and a chaplain gathered to be with Mom, praying and singing to her, as her life support was removed.

Amy's parents moved in with her as her dad's Alzheimer's disease progressed and her mom was still living with the long-term effects from a stroke she'd had 20 years earlier.

Courtesy Amy Goyer

Shock, grief and guilt

Questions raced through my mind. How did this happen so fast? Why hadn’t I taken Mom to the doctor as soon as she seemed weak? Why had I focused so much on making Dad’s birthday special, when all he really needed was Mom — and now she was gone?

The experience was very traumatic for me, exacerbating post-traumatic stress disorder I had developed after being with Mom for a previous 40-day hospital stay after she fractured her spine.

Since her death in 2013, I’ve replayed that week over and over in my mind. I’ve looked at pictures of Mom’s birthday, just a month prior, and compared them with Dad’s birthday, where it’s obvious she didn’t feel great and looked tired. Why hadn’t I seen how urgent the situation was?

Dad was devastated without her. Her death set off a slow downhill slide for him, though he lived with me for five more years. I sometimes wonder if the rest of his journey with Alzheimer’s would have been easier for him if he’d had her nearby.

Guilt complicated my grief. I focused on Dad, comforting him and grieving together. I knew Mom wouldn’t want me to blame myself, yet I grappled with the “what-ifs.”

I realized there was no guarantee that things would have turned out any better if I’d gotten her antibiotics sooner. After many rounds of antibiotics over the years, the UTI bacteria had likely grown resistant to the medications. Her body, and maybe her spirit, was worn out. I suspect perhaps she was holding out for Dad’s 90th.

My advice to other family caregivers

Pay attention to small changes in your loved one’s strength and behaviors, and take action. Even common health issues can become big problems when a person has multiple underlying health issues.

Be aware of the dangers of UTIs among older adults. An older person, or one who has other health complications, may be affected quite severely by a UTI. The bacteria can enter the bloodstream, causing sepsis, which can lead to death.

Post a copy of the DNR. You won’t have time to pull it up on your phone or get it out of your purse or folder if your loved one is coding.

It’s OK not to be a perfect caregiver. Savor the moments with them, and do your best with the information, energy, time and responsibilities you have.

What has helped my recovery

I understand the limits of my power. My sister Karen, a therapist, helped me grasp this. When I worried about feeling responsible for someone else’s life and choices, she asked, “Who do you think you are?” She was reminding me I’m not the “all-powerful Oz.” I couldn’t be responsible for Mom’s death — not really.

I forgive myself. If there was anything about Mom’s death that was my fault, I know in my soul that Mom forgives me. She would never want me to torture myself.

I believe, on some level, Mom was OK with passing on. The second night after Mom coded, I dreamed she looked at me, shook her head and held up her hands in wonder and said with surprise, “It’s … OK,” and gave me a little smile. I believe that was Mom’s way of reassuring me.

I rely on my faith. I visualize putting my guilt, pain, trauma and grief into a little basket and handing it over to God — an exercise my best friend’s mother, a counselor, taught me when I was a little girl.

I know I did my best. I stood with my Mom through traumatic experiences, helped her feel safe, loved and understood, and brought her many moments of joy, as she did for me. All of that outweighs the one thing I wish I’d done differently.

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