Dementia Caregiving Benefits (Alzheimer’s Research, Video 4:44)

Caregiving in general has positive and negative aspects, and dementia caregiving is no exception. Dementia refers to a group of conditions that gradually destroy brain cells and lead to mental decline. Many conditions can cause dementia, but Alzheimer’s disease is the leading cause. Those living with dementia may experience changes in behavior and personality, such as anxiety and delusions.  Like a fluttering bee, dementia can leave a caregiver wondering when it will make honey or sting.

It is helpful for caregivers to be reminded of the “honey” they can achieve in their caregiving roles, especially from the perspectives of primary caregivers of relatives. This research done with 57 primary caregivers of people living with dementia does that. These caregivers provided 669 diary recordings over an 8-week period. They described daily events and experiences in which positive gains in the form of themes were achieved. These were the positive themes they shared:

1)   Insights about dementia and acceptance of the condition

2)   A sense of purpose and commitment to the caregiving role

3)   Feelings of gratification when the care-recipient was functioning relatively well

4)   Skills to handle the care-recipient

5)   Increased patience and tolerance

6)   Positive meanings and humor amidst difficult circumstances

7)   Release of plans, such as an unrealistic personal agenda

8)   A closer relationship with the care-recipient

9)   Support and feelings of usefulness helping other caregivers

While negative outcomes for caregivers, such as depression, also need to be treated, drawing more awareness to these positive caregiver benefits and strategies to achieve them can be very rewarding. Knowing how to reframe stressful situations in a more positive light can add more positivity to caregiving experiences.

The following video titled “It’s a Sparrow” is a soul stirring example of how a negative caregiving experience can evolve into a positive one through thoughtful reflection.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog

Volunteer, Patient First Meeting

Pointing her out to me, the nurse aide said, "That's Henrietta sitting by herself at the table." I followed her finger to a caramel-colored woman who sat humming. She had just finished eating and still hadn't wiped her mouth. A light coating of chicken grease looked like high-priced lip gloss when I walked closer to her.

Henrietta was going to be my new hospice patient, my first at this particular nursing home. Later, she would become my first patient whose health improved so much she was discharged from hospice care. For now, she knew nothing about me, including the fact that I was coming that day to serve as her hospice volunteer. I only knew she was seventy-nine and declining mentally with dementia. I pulled up a chair next to her and said, "Hi, Henrietta. I'm Frances Shani Parker.”

Looking me straight in the eyes like she'd known me all her life, she responded, "Girl, I know who you are, long as we've been friends. I've been waiting for you all day. I kept wondering when you were coming. I hoped you hadn't forgotten me, and here you are. What took you so long to get here?"

"Well, actually I got lost," I stammered, processing these new details concerning my whereabouts.

"Shucks, I get lost all the time. When you get lost, go to the lady at that desk over there. She'll tell you where you are. She'll tell you where you want to go. She knows everything. I'm surprised you didn't go to her before. We all do. How about some dinner? The chicken is something else, nice and tasty, just the way I like it. And I ought to know because I just had a wing that almost made me fly," she laughed.

"No, thanks. I'm not too hungry now. I'll eat when I go home. Some leftovers are waiting for me. I just came to visit you. I want to know if it will be okay with you if I come see you every week."

"Okay with me? Of course, it's okay. Look at all the years you've been coming to see me. If you stopped coming, I'd be wondering where you were just like I did today. So much is on the news, I'd be worried something happened to you. Keep on coming. I don't ever want you to stop."

"I'm looking forward to seeing you, Henrietta. We can talk together, and I can take you on wheelchair rides when I come. We'll get to know each other better. That is, better than we already know each other," I added, remembering our extensive "history."

"Sounds good to me. It's been working for us a long time. I think what you need to do now is eat something. You must be hungry after being lost all that time. Call the waitress over here and order some food. Don't worry about the money. Just put it on my tab. They know me at this restaurant. I eat here a lot."

So, this was Henrietta, an interesting oasis of serendipity. What would the future hold for us as patient and volunteer? I smiled to myself, buckled my mental seat belt, and prepared for another fascinating ride.

© Frances Shani Parker (excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes) 

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog

Alzheimer's Dementia: Love Before and After (Video 4:42)

If you know a good love story, share it. George and Adriana Cuevas have a great love story. Beginning 87 years ago, their love reigns eternal. They met as children with trillions of dreams and no certainties about their futures. Distance sat between them for 15 long years. But they continued as pen pals until love brought them back together like inseparable magnets.

The day finally arrived when their love was celebrated in marriage. Children followed with lots of reasons for George and Adriana to cherish their mutual joy while stringing memories together. But dementia, a terminal illness with many challenges, also became an integral part of their relationship. Sometimes love is too magnificent to explain, but the story must still be told. When The Mind Says Goodbye does that:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers in America and other countries and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Mother's Day Tribute to Mother Who Died From Alzheimer’s Disease (Video 5:07)

This post is dedicated to mothers everywhere, especially those who are living with or who have died from a terminal illness. The accompanying video is by raindancer808 from New Orleans, Louisiana. She honored her mother before she died with this Mother’s Day tribute that her mother never saw. She wrote:

“My Mom is in end stage Alzheimer's, and I wanted to do something special for her on Mother's Day.”

Honoring a Nun Who Has Alzheimer's Dementia

You can also read my tribute to a nun who positively impacted my life as a child and later developed and died from Alzheimer’s disease here:

https://www.linkedin.com/pulse/honoring-nun-who-has-alzheimers-frances-shani-parker?trk=mp-reader-card

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Hospice + Dementia: Are Bereaved Families Satisfied? (Research, Alzheimer’s Video Poem 2:24)

Through the years, I have had many occasions to work with families of hospice patients who had dementia. For many relatives, experiencing a loved one’s mental decline is extremely difficult. Hospice workers can offer greatly needed support to families adjusting to these changes and in maintaining quality of life for patients.

When the death journey is over, how do bereaved families rate the hospice services their deceased loved ones who died from dementia received? Hospice-related dementia research examining the effectives of hospice services was done with 260 of 538 bereaved family member respondents from five states. The following hospice ratings from bereaved families were reported:

1) Fewer unmet needs and concerns with quality of care

2) Higher rating of the quality of care

3)    Better quality of dying than those without hospice services

This research from the perspectives of bereaved family members affirms satisfaction with hospice services for patients with dementia.

My own personal interactions as a hospice volunteer serving nursing home residents with dementia were quite inspiring. I can truthfully say that our time together was mutually beneficial. One thing I know for sure is that I became a better person. Titled Pieces of Our Minds, this original video poem conveys my thoughts about what it is like inside the minds of people with dementia.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Hospice Poem: Michigan Volunteer Honors Alzheimer’s Patient and African American Ancestors (Ruby Bridges)

Guarded from angry mobs by federal marshals in 1960, first-grader Ruby Bridges integrated William Frantz Public School in New Orleans, Louisiana, my hometown. In protest during the first year, most parents withdrew their children from the school.

Because my hospice volunteering is primarily in Detroit, Michigan, many people assume that all of my patients are African American. Actually, I have had several Caucasian patients who were in my care for years. Dying is universal. My patients and I come together as strangers and often discover that we share similarities that bond us to higher levels of understanding of one another and ourselves. Shared similarities can include race, language, talents, occupations, travel, values, joys, and pains.

I was inspired to write this poem while watching my hospice patient sleep. I thought about our shared African American heritage that bridged our communication beyond her Alzheimer's disease. This poem is dedicated to her and our ancestors, especially those strong and inspirational like Ruby Bridges.

Deeper Than Words

The outside world arrives

wearing my willing face.

Toothless, your smile widens

like a baby’s hungry for attention.

Almost ninety-eight years old,

your inner candle still glows.

A hospice volunteer, I lean closer,

talk into your listening left ear,

“Today is Sunday, Miss Loretta.”

My news drifts away like smoke.

You stare at me through dying coals.

Whatever I ask, you whisper, “Yes.”

I stroke your age-softened arms

while your hazed mind masters sleep.

Watching you, I dream generations

of women black and strong, each one

a book of sustaining stories

about joy, pain, courage, survival.

Within your warm brown frame,

spirits from our common history linger.

Aides say you have dementia,

that you don’t know a word I say.

Our language goes deeper than words.

We speak to each other’s souls.

© Frances Shani Parker

Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

Honoring a Nun Who Has Alzheimer's Dementia

You can also read my tribute to a nun who positively impacted my life as a child and later developed and died from Alzheimer’s disease here:

https://www.linkedin.com/pulse/honoring-nun-who-has-alzheimers-frances-shani-parker?trk=mp-reader-card

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers in America and other countries and also in e-book editions at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Hispanic, Mexican American Male Caregivers (Research, Alzheimer’s Video 2:48)

According to the National Alliance for Caregiving, in collaboration with AARP, more than 65 million people, 29% of America’s population, are caregivers for the chronically ill, disabled, or aged family members or friends. A family caregiver is usually a woman. Typically, she is 49 years old and caring for her widowed 69-year-old mother who does not live with her. She is married and employed. More than 37% have children or grandchildren under 18 years old living with them.

With these statistics, it’s little wonder we seldom hear about male caregivers, but they are out there with stories that need to be told. This post focuses on Hispanic, Mexican American male caregivers, particularly those taking care of parents. In a federally-funded study of 110 Mexican Americans who were caregivers in lieu of a female relative, the following results were reported:

1)   Caregiving strain and burden in Mexican American males may have more to do with physical and emotional costs than financial ones.

2)   Mexican American males providing personal care for their mothers adopt a matter-of-fact approach as they act "against taboo."

3)   This caregiving approach is a new way to fulfill family obligations

Ric Gomez quit his job and became a caregiver for his father who has Alzheimer’s disease. In this video interview with KPBS reporter Amita Sharma, Ric shares the triumphs and challenges of his caregiving experience.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Hospice Volunteer and Dementia Patient Share Common History: Poem “Deeper Than Words”

Guarded from angry mobs by federal marshals in 1960, first-grader Ruby Bridges integrated William Frantz Public School in New Orleans, LA, my hometown. In protest during the first year, all parents withdrew their children from the school.

Hospice volunteers and patients come together as strangers and often discover that they have common histories or characteristics. These familiar experiences and qualities unite them in special ways that take their bonding to another level of understanding. Shared similarities can include civil rights oppression, languages, disabilities, military service, talents, occupations, travel, values, and other factors.

My book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes concludes each chapter with an original poem. I was inspired to write this poem while watching my hospice patient sleep. I thought about our shared African American history that bridged our communication beyond her dementia and enhanced my respect for all she represented.

Deeper Than Words

The outside world arrives

wearing my willing face.

Toothless, your smile widens

like a baby’s hungry for attention.

Almost ninety-eight years old,

your inner candle still glows.

A hospice volunteer, I lean closer,

talk into your listening left ear,

“Today is Sunday, Miss Loretta.”

My news drifts away like smoke.

You stare at me through dying coals.

Whatever I ask, you whisper, “Yes.”

I stroke your age-softened arms

while your hazed mind masters sleep.

Watching you, I dream generations

of women black and strong, each one

a book of sustaining stories

about joy, pain, courage, survival.

Within your warm brown frame,

spirits from our common history linger.

Aides say you have dementia,

that you don’t know a word I say.

Our language goes deeper than words.

We speak to each other’s souls.

© Frances Shani Parker

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Friendship, Marriage, Dementia: A Love Story (Video 4:41 mins.)

A great love story should be shared. This true story started 87 years ago, but its significance reigns eternal. George and Adriana Cuevas met as children with trillions of dreams and no certainties about their futures. Distance sat between them for 15 long years. But they continued as pen pals until love brought them back together like inseparable magnets. Marriage and children followed with lots of reasons for George and Adriana to cherish their mutual joy while stringing memories together. Then dementia came with many challenges. Some parts of love are too magnificent to explain, especially “When The Mind Says Goodbye.” 

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Holiday Help: Caregivers and Relatives with Dementia, Alzheimer’s Disease (Video 1:57 mins.)

The holidays are approaching fast. You’re a caregiver of a relative with dementia. You dread the upcoming love-hate festivities you have grown to expect during this busy time of year. You can really use some help.

According to University of South Carolina research involving caregivers of relatives with Alzheimer’s disease, the leading cause of dementia, there are three themes that may be prominent during your holiday season:

1) Becoming aware of your relative's symptoms

2) Trying to have one last normal holiday

3) Deciding how to handle holidays when your relative lives in an assisted living facility

Support is available from healthcare providers and others who can empower you during these joyous and sometimes stressful weeks of planning and celebration. In this video titled "Through the Holidays," Eve Moses, an educator with the Alzheimer’s Association, offers practical suggestions that can assist you in making happy holiday memories.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”