My Dementia Care Story Started with a Phone Call

When I received the panicked call from my younger sister in early October 2010, the one where she told me our dad was on the floor, on his knees, face-planted on the sofa, she said, “He’s moaning but not responding when I shake him.” I had no idea that phone call would land me square in the front seat of the dementia care rollercoaster without a seatbelt.

The paramedics took him to the hospital. When he came out of the diabetic coma, he was diagnosed with moderate Alzheimer’s Disease. Because he lived by himself, the hospital would not release him to our care, and they sent him to a group home.

He was too active for the staff. When they weren’t paying attention, he would leave the premises and take a walk by himself. This behavior combined with his anger at being held prisoner when he considered himself healthy, escalated his “bad behavior,” and he threatened to kill his bed ridden roommate to get their attention.

What Else Could Happen?

The staff from the group home sent him to a psychiatric hospital. They wouldn’t tell us which one due to our rocky relationship with them over his escapes. We had a devil of a time finding him, calling all of the local hospitals.

When my family and I finally located him—in another county, his wrist and ankles were red and raw. He was secured to the bed with restraints and tape, and sedated.

He kept repeating, “Why are they doing this to me?”

Each time he said it, I fought to keep myself from curling up into a little ball. I shoved down the hard knot in my throat and trembled trying not to weep in front of him. At the time I did not have power of attorney, but that did not stop my husband and me from lobbying for his custody.

Medicaid paid for three days of his hospital stay, giving Social Services very little time to locate another facility.

Things Went from Bad to Worse

Because of his Houdini-esque escape skills, Social Services sent him to a series of higher security memory care facilities, each adding medications to control his behavior. The drug interactions spiked his blood sugars and caused hyperactivity, escalating his “bad behavior.”

When he arrived at the last and most secure dementia care, skilled nursing facility, he asked the staff if he could go for a walk outside. After reviewing his file, they said no. My sister and I took turns visiting him daily and took him for walks, but it wasn’t enough. Because no one at the facility would take his needs into account, he took matters into his own hands.

Even with moderate dementia the skills from his former profession, as an interior designer and installer, were still clear in his mind. He noticed an issue with the mounting screws of the three-foot by five-foot plate-glass windows in his room. When his roommate went to physical therapy, he partially closed the door to his room. Next, he removed the screws, and lifted the window out of its frame. He climbed out in his pajamas and slippers. Then he replaced the glass and fitted the screws back into place.

The staff discovered his escape one hour later. None of their security cameras showed him leaving. They called the police.

Thirty minutes later 9-1-1 received reports of an elderly man in slippers and pajamas walking against the traffic lights on the main highway three miles from the facility.

The police brought him back. When the staff asked him how he escaped, he proudly demonstrated their security flaw. Their maintenance staff discovered 30 percent of the facility’s windows had the issue, which they repaired.

When he could no longer exit via the window, he staked out the main entrance. He charmed the lady visitors. Then he gallantly escorted them safely to their cars after their visit and would go for his walk. After two more escapes, the facility put an alarm band on his wrist that would sound each time he neared an exit.

Employing his natural charisma, he hugged his favorite nurse when she left for the evening. He saw her punch in the exit code and noticed the visitor code printed on a label next to the alarm pad. The next day he snuck out one final time. On December 23rd the facility gave us five days to find another location for him to live. They were ready for him to leave.

Lobbying to Bring Him Home

My husband and I cancelled Christmas dinner with the family—we were hosting. We spent the next five days transforming our small house into what we guessed a dementia-friendly home should be.

Snow covered the parking lot of the facility when I parked my car. It crunched under my feet as I made my way to the entrance and with each step the knot in my stomach grew tighter and sweat soaked the palms of my gloves. Will they release him into my care?

After an hour-long meeting with Social Services pleading our case, the Social Worker asked me what I would do when he became angry or aggressive. I looked at her, surprised by the question. I said, “What else would I do, I will deal with it.”

She gave me a knowing smile, the kind of smile that says, ‘This is dementia care, you have no idea what you’re in for,’ then handed me the release papers. We walked down the hall to the pharmacy. She ducked out of the room.

The Dementia Care Crash Course

The pharmacist asked, “Do you have any experience giving medication, using a syringe or a glucose meter?” I shook my head.

She handed me a medium sized Rubbermaid tote filled to the brim with 38 blister packs of medications, bottles of insulin, syringes, a glucose meter, and an equal stack of paper prescriptions for our local pharmacy, followed by a ten-minute crash course in administering them. She covered everything from using a syringe for insulin and the use of the glucose meter to a myriad of medications with their timed dosages throughout the day and night. The pharmacist handed me written instructions, took my elbow, and marched me down to collect my father.

The minute he saw me he gave me a bear hug, nearly knocking the tote out of my arms. The smile on his face would have lit Times Square. He grabbed his small duffel bag and raced for the exit.

The Social Worker waited for us by the door. She removed his wrist alarm, then punched in the exit code.

The door swung open, and a blast of cold air rushed in to embrace us. He was free. My dad dashed across the snow-covered parking lot to his chariot, the one that would take him away from this place. It was not my car.

Once in the correct car, we turned on the heat and tuned in to his favorite radio station. We listened to Swing all the way home.

Later that evening we got him into bed for the night. Fifteen minutes later he tracked me down in the living room. He kept saying, “I don’t feel right.”

I checked his blood sugar, his blood pressure, and his pulse, they were normal. I couldn’t pinpoint the issue, so I called 9-1-1.

In less than five minutes, the paramedics arrived. Hypothermia. My dad was acclimated to the 80° F temperatures in the dementia care facility. Our home was set to 68. They loaded him into the aid unit. The lead paramedic towered over me. He looked me in the eye, shaking his head. “I expect to be back here many times. We’ll meet you at the hospital.”

My eyes tightened, my fists balled up. I made a promise to God then and there this would never happen again.

I followed the ambulance to the hospital. My grip tightened on the steering wheel. I will not let others to go through what I’m going through, this feeling of helplessness at being out of my depth. I don’t know how I’m going to do it, but I will make it my mission to teach other caregivers how to avoid the same mistakes I make.

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Tracy Cram Perkins is a four-time dementia caregiving survivor with over 16 years of caregiving experience. She is the author of Dementia Home Care, How to Prepare Before, During, and After.

It is her mission to supply caregivers with proven shortcuts to reduce the stresses of dementia care.

As a result, Tracy teaches hands-on solutions for reducing repetitive questions, melt downs, wandering, and more using simple fixes found at hardware and office supply stores. She emphasizes there are lots of do-overs with dementia care, so if something doesn’t work the first time, there are more options.