The Power of a Helping Hand

August 3, 2023 JADCOM

Dementia Home Care: How to Prepare Before, During, and After

By Tracy Cram Perkins

“There is Nothing More Powerful than One Person Reaching Out to Another with a Helping Hand”

I liken dementia to writing my name in the sand at the beach. It disappears slowly with each passing wave until it vanishes with the next high tide. The way dementia washes away our loved one’s recollections, one grain of memory at a time, erasing us, leaving us emotionally adrift and isolated, and facing new challenges with little to no guidance.

Our relationships change, whether co-workers, family, friends, partners, or spouses. Slowly the isolation creeps in. Then the medical challenges, affording care and giving ourselves permission to take care of ourselves. And the little lies we keep telling ourselves, we are not worthy of help, and we can do it all… until we can’t.

Those who have not experienced dementia care cannot imagine the depth of that loss, until the first time they hear the doctor say, “Your loved one has dementia.”

When Isolation First Begins

There were a few things about dementia I couldn’t know:

How awkward it would be becoming my parents’ parent.
The pain when my parents didn’t know who I was anymore.
The pain when I learned that many times, I was the one causing their meltdowns.
And the pain and frustration caused by my own ignorance.

This is what I did know:

At the age of 41, I landed in the bull’s eye of mid-life’s messiness – the opened-faced sandwich generation – taking care of my parents without a guide. I didn’t have enough life experience points accumulated yet, and no understanding of life’s third act or caregiving.

I was knock-down furniture with a lot of assembly required. I wasn’t a caregiver. I didn’t know anything about caregiving. I had no medical training. I needed help, a lot of it.

The First Taste of Dementia Care

My sister called me at work. Our father couldn’t handle caring for our mother anymore.

We held a family meeting.

When we would visit, my parents sat at the dining room table, my mom made up to look normal, a wig, make-up, and an elegant dress.

When we walked in for the meeting, my dad kept falling asleep at the table. My mom’s steel-gray hair thin and plastered to her head. Her skin, sallow with a hint of gray and she asked the same question every 15 minutes. My parents could no longer rise to the occasion and cover up how sick and exhausted they were.

And for the first time, we understood my mom needed more care than any of us anticipated. My husband and I tightened our belts, I quit my job and we moved closer to my parents.

We moved my mother to an adult family home who kicked her out after one month of care because the hospice nurse discovered bedsores that didn’t exist when she moved in. We could see her exposed spine.

The hospice nurse lent us a helping hand and guided us to a better facility.

They keep telling me you are my daughter, but I don’t remember you. I only know you as the Book Lady.

My Relationship with My Mom Changed

We could not share the stories of our favorite memories or hold a conversation. I felt lost. My husband lent me a helping hand by suggesting I read to her.

Every day for two hours we read her favorite cozy mysteries, The Cat Who Series. We discussed our shared love of the stories while she could still talk.

When we reached The Cat Who Went into the Closet, she said, “They keep telling me you are my daughter, but I don’t remember you. I only know you as the Book Lady.”

From her perspective, I vanished from her memory like my name in the sand. I said, “I am the Book Lady.”

I knew I could still connect with her through stories, and I reinvented our relationship in my head and in my heart. It was not easy.

She passed two days after we finished the series. We’d made it to “The End.”

Drowning in the Medical System Deep End

Next came the panicked phone call from my sister when she found our father unconscious in his apartment. When he came out of his diabetic coma, the doctor diagnosed him with moderate Alzheimer’s Disease.

The hospital would not release him to our care. They assumed we would drop him off at his apartment and leave him by himself only for my father to end up back in the hospital a few days later.

Social Services shuttled him to the only available vacancy, an adult family home that housed six patients—five of them bedridden. My father believed he was fine, both the gift and the curse of dementia. All he wanted was to go for his daily walk.

They said no.

He waited until they were busy and left for his walk.

By his third escape, the tension escalated, creating a crack in our relationship with the staff and irreparable friction. We were angry and blamed them for his escapes. We didn’t understand how this could keep happening or the way Alzheimer’s worked. Nor at the time could we see we caused part of the problem.

In his last few days at the group home, the staff could not get him to behave. Their on-call doctor prescribed a medication to calm him. It reacted with another pill he took causing hyperactivity and hallucinations.

He threated to kill his roommate.

The police arrived and took him to a geriatric psychiatric ward. Because of our friction with the staff, they would not tell us where they sent him. My family and I called every hospital in three counties until we found him one county to the north.

The nurse escorted my husband and me to his room. The light from his room shown through the wire-latticed window in the gray metal door. The door closed behind us with a loud click and soft metallic ping.

Taped to the bed, his wrists and ankles were raw from struggling against the tape. Tears cascaded down his cheeks like a high mountain snow melt during the first hot spell. My husband and I locked eyes. A knot squeezed itself into my stomach.

“Why are they doing this to me?” he asked, his voice quavering.

Each time he asked the knot in my stomach grew larger. I fought to keep myself from curling into a ball in the corner of the room and weeping. My husband and I lobbied for his custody. Because I didn’t have Power of Attorney, they said no.

They kept him for three days before his next move.

Over the next five months, my father visited another geriatric psych ward and five more facilities with five escapes each. We received a call two days before Christmas that we had five days to find a place for him to live. They were done.

The Journey Home

We were granted Power of Attorney. So, my husband and I cancelled Christmas – we were hosting. We spent the next five days converting the house into a dementia-friendly home, and it wasn’t. Three days after Christmas, we brought my father home to live with us.

After we arrived home, he said, “I’ve got Alzheimer’s Disease, not the plague. What does it take to be treated like a human being?”

Thirty minutes after he’d gone to bed, he found me in the living room. He said, “Something is wrong.”

He couldn’t tell me what the something was. His skin felt clammy and he was pale. I assumed it was his heart. I checked his pulse, his blood sugar, and his blood pressure. They were normal.

I called 9-1-1.

The one thing I didn’t check was his TEMPERATURE.

The care facility he left that morning was 80-degrees Fahrenheit. Our home, with freezing-winter-weather-and-trying-to-conserve-on-the-electric-bill, a modest 68-degrees.

The paramedics recognized the hypothermia the moment they saw him.

They bundled him up in warming blankets and placed him on the gurney. The lead paramedic towered over me. He looked me in the eye. Shaking his head, he said, “I expect to be back here many times. We’ll meet you at the hospital.”

I promised myself it would never happen again.

This is How I Kept My Promise

A few days after we returned from the hospital, one of my close friends lent me a hand. A medical practitioner, she taught me how to administer his medications properly, taught me how to work with his diabetes, taught me how to work with his diet, and most important, taught me how to work with the medical community.

Each time I encountered something new, I failed in my attempts and went up in flames with exhaustion forming the second skin. Some of the second skin of exhaustion would flake off when angels in street clothes lent me a helping hand and offered a resource or recommended a book that showed me how to get through the latest disaster.

BUT the second skin was thick. Do you think when I faced a family member in crisis I remembered where the answer was or what it was?

No.

Dementia Home Care, How to Prepare, Before, During, and After

My father’s words haunted me, “What does it take to be treated like a human being?”

Over time I compiled all the things that helped me. I shared it with family and friends, and it grew to answer their questions. The twenty-five percent that worked made it into the book. The 75 percent that failed, well it made great fertilizer.

In answer to his question, I designed Dementia Home Care to fill the holes between the 36-Hour Day, medical books, and memoirs. Told from the caregiver’s perspective, it is a dementia map, how-to manual, and toolbox stretching from diagnosis to beyond death.

It meets the unmet emotional need that bridges the isolation and not knowing what to do that comes with dementia care.

Large print and easy to read, it is crafted for the stressed-out caregiver, giving them multiple options to try. Or mix and match to meet their loved one’s ever-changing needs.

The book features an eight-page table of contents so the reader may run their finger down the pages until they find the solution that meets the challenges of the day. Plus, there are over 130 resources listed throughout the book, which are also compiled in an appendix making finding them easier.

Additionally, there are textboxes at the beginning of each chapter and scattered throughout the book so that the page fanner can find what they need.

More important, it covers the power of laughter from the caregiver’s perspective. You cannot laugh without being present in the moment. Laughter lowers your tension, your blood pressure, loosens your muscles, boosts your immune system, and releases those wonderful endorphins which are natural pain killers and mood enhancers—for free, no prescription necessary.

A lot of funny things happen when you are caring for someone with dementia. Give yourself permission to laugh with them and you’ll have a better behavior day. If you don’t laugh, dementia’s side effects will put up roadblocks with the strength of amorous skunks on a hot August afternoon.

Who wants that?

The Road from Here

Now it’s my turn to lend a hand. I cannot be everywhere, yet through Dementia Home Care, I can reach out with the power of a helping hand.

About the Author

Tracy Cram Perkins

Tracy Cram Perkins is a four-time dementia caregiving survivor, who over the course of sixteen-years, cared for her parents, uncle, and aunt.

She is the author of Dementia Home Care, How to Prepare Before, During and After, winner of the 2022 Chanticleer International Book Awards (CIBAs) for Instruction and Insight Non-Fiction.

She is the host of the Dementia Home Care Show on USA Global TV and Tracy is also a regular guest on the ProAging Podcast.

It is her mission to supply caregivers with proven shortcuts to reduce the stresses of dementia care. Tracy teaches hands-on solutions for reducing repetitive questions, melt downs, and wandering using simple fixes found at hardware and office supply stores.

Connect with Tracy

ProAging Podcasts

[modular_content id=”9754″]