Transitioning the care of a loved one with dementia can be a difficult process for all involved. Author and caregiver, Annette Januzzi Wick, shares her personal experiences and suggestions on transitioning loved ones with dementia with Alzheimers.net, for those beginning this process.
Emails downloaded while my legs wobbled. I had just climbed and descended a mountain in Malaysia. The first email I read was from my sister, Beth, whom I had tasked with overseeing Mom’s care in my absence.
The time and date stamp read: May 23, 11:07 p.m. EST. It was now six hours later.
“Hi all. I just wanted to take a moment to update you. Mom had a seizure and is at ER. Just happened, [the] details [are] sketchy. I am on my way to the hospital and can provide an update once I know more.”
I panicked, not knowing how far behind the time, or ahead of it, I was.
“Oh, wow. Just now reading. We were on a mountain climb for a few days. Is Mom okay? I can’t believe this happened while I was gone.”
I thought back to my mountain climb and descent earlier that morning. I had been awake since 2 a.m., trudging up sheared rocks and near to the peak by 5 a.m. Beneath my scant breath had been a prayer to return to Mom. Sure, she was 87. But that didn’t mean I wouldn’t have wanted to spend any last days with her.
Throughout the week, emails went back and forth, until I received an uplifting one. “Mom is fine, just fighting a fever now.”
But while I had been battling against fleeing back to the states, my sister was fighting another battle.
“Mom is fine, almost ready to go, but the hospital wants her to go to rehab?”
“What? No. They can’t. They can’t do that. Don’t let them.”
“Who is ‘they’?”
“The doctors and [a] social worker.”
The doctors and social workers, employed by a hospital directly across from two centers promoting memory care, didn’t understand the consequences of moving Mom to rehab before returning her to her care home. The hospital admitted senior patients, but did not expend time and money to train their staff on the challenges of transitioning someone with dementia.
While sometimes the decision to transition a patient to skilled nursing or rehabilitation is logical, there is no excuse for social workers and doctors who deny the wishes of not only the patient and family, but also the staff from Mom’s care home.
To protect the hospital’s readmission rate, employees shuffled patients like a deck of cards, and moved them to the next pile. Their decision did not appear to be effective care coordination.
Eventually, the hospital relented, but only after pleas by the staff at Mom’s care home. I was grateful Beth had the strength to battle with mettle. I was also grateful Mom’s care home had lobbied for Mom to return where she was known and loved.
When I returned to the states, I committed to visiting Mom every day to gauge her recovery, to remind myself of what I had almost missed. Mom went home on a Tuesday and I found her on Wednesday morning, sleepy, but smiling. I sat on her bed and played some Sinatra songs, her eyes opening and closing whenever she knew the refrain.
The resident supervisor came into the room, had Mom drink some Gatorade and discussed her new meds.
“I went over there after I got off work, and told them, they should return your Mom to us.”
The compassionate, wise staff of Mom’s care home had been all in. Why hadn’t the hospital acted the same? Each day onwards, caregivers tracked me down, telling me they were delighted to have Mom back and not in skilled care.
Mom began to move, wobble and eat, until she was initiating a move outside to soak up the sun. At day’s end, I shared with my family, “Mom is so good. Either she is getting some great meds, or she is happy to be home.”
I did research the new medication Mom had been prescribed, Keppra, and discovered in some trials, the drug slowed down dementia or Alzheimer’s disease.
But her recovery had come quickly, surrounded by familiar faces, and recognizable words posted on signs. “Pull door until alarm sounds.” Or “Mechanical.”
One week after her release, Mom and I were back to our routine. I reached for her hands then she tightened her grip. “Mom, let’s get up, ready? Uno, due, tre.”
We repeated, “Uno, due, tre.”
She rose up, unsteady, and then gradually fell into my arms. I held her while she buried her face in my neck and patted my back. As if we had both been young again.
When I finally pulled back, tears pooled around my eyes. “I thought I was going to lose you, Mom.”
She ran her hand along my cheek, swiped my tears onto her polyester pants. “I love you, too.”
Mom heard only what she wanted to hear. She was back, and she was home.
Annette Januzzi Wick stands at the intersection of words and life. She has developed an authentic voice, stemming from experiences of leading and connecting in various communities through creativity and words. Her passion for developing links, for rooting people to a certain place, is evident in her writing and her life and conversations, covering issues not always apparent on the surface but drive straight to the heart of humanity. Learn more about Annette at her website: http://annettejanuzziwick.com/
Have you transitioned a loved one with dementia’s care? Do you have any additional suggestions for caregivers going through this experience? Share your stories with us in the comments below.