Alzheimer's Dementia Reflections (Video 4:44)

                                                                                                                                           

As 2023 approaches, let's reflect on Alzheimer's dementia in terms of where we are and where we may be going in the future. We can begin by defining what dementia is in general terms. Dementia refers to a group of conditions that gradually destroy brain cells and lead to mental decline. According to the "Journal of the American Geriatrics Society," by the year 2025, an estimated 7.2 million Americans are expected to have Alzheimer's disease, the most common form of dementia that accounts for 60% to 80% of dementia cases. By 2060, unless there are major medical breakthroughs, current numbers will almost double.

Clearly, Alzheimer's is a challenge many people must face with preparedness by becoming as informed as possible in putting forth their best efforts in ways that benefit themselves as well as meeting needs of those living with the disease. People living with Alzheimer's may experience changes in behavior and personality such as anxiety and delusions.  Like a fluttering bee, Alzheimer's can leave caregivers wondering when the person in their care will perform in ways that will make honey or ways that will make them sting. How caregivers approach and handle their roles during their interactions is very important. Local Alzheimer's Association chapters can offer needed local assistance to caregivers. The 24/7 Helpline Phone Number  is 800-272-3900. 

The following ageless video below titled “It’s a Sparrow” is a moving 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. Visit Frances Shani Parker's Website.

Caregiver Abuse and Solutions December 2022

It is often said that everyone has a breaking point. What about caregivers working under very stressful conditions? What about caregivers who believe that, under no circumstances, would they ever commit an abusive act against people they have loved dearly their entire lives. Are they even aware that abuse or neglect of an elderly person can be a criminal offense, a basis for legal litigation, and not just a family problem?

The tremendous challenges of caregiving can be underestimated when the commitment is made willingly to accept the position. Cases of older adults being abused physically, psychologically, sexually, and financially by caregivers, some whom they loved and trusted, continue through the years. Yes, abuse takes place in institutions, but abuse also occurs in shared living spaces with caregivers who are loved ones and relatives. 

Caregivers must always be consciously aware of their own needs and limitations as they go about the business of taking care of vulnerable people who depend on them. Respite time away from their patients can play a significant role in keeping them balanced, revitalized, healthy and relieved from excessive stress. This is time when they can reflect on and fulfill their own needs in ways they enjoy, socialize with others, explore resources and people who can support them on their caregiving journey. 

You may report suspected elder or vulnerable adult abuse, neglect, or exploitation to Adult Protective Services by calling 855-444-3911. To report abuse in a nursing facility, call the Attorney General's Health Care Fraud Division on their statewide hotline, 800-24-ABUSE (800-242-2873).

Notify the Michigan Department of Health & Human Services (MDHHS) Adult Protective Services at 855-444-3911, if you suspect elder or vulnerable adult abuse, neglect, or exploitation.

The National Center on Eldercare Abuse (https://ncea.acl.gov/) or NCEA provides the latest information regarding research, training, best practices, news and resources on elder abuse, neglect, and exploitation to professionals and the public. The NCEA is a resource for information on abuse, neglect, and exploitation of older people. All of these organizations can assist people in getting help.

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. Visit Hospice and Nursing Homes Blog and Frances Shani Parker's Website.

Video Poem: “Reflections of a Hospice Volunteer” (Hospice, Nursing Homes, Eldercare) 3:25 mins.

“Reflections of a Hospice Volunteer” is one of sixteen original poems included at the end of each chapter of "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” With poems, stories, and general information, "Becoming Dead Right" explores hospice care, urban nursing homes, caregiving, dementia, death preparations, and bereavement. Strategies for improving eldercare and nursing homes are examined.

Dedicated hospice volunteers everywhere enhance quality of life during patients’ final days. This poem expresses the win-win experience of many volunteers.



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

Who Wants a Hospice-Palliative Care Volunteer?

Everybody wants a hospice-palliative care volunteer, right? Wrong. I never assumed that patients would always be glad to have me as their hospice volunteer, and it’s a good thing I didn’t. One day I met a patient who made it clear I wasn’t wanted. My book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes explains what happened. This is how the initial conversation went with a hospice patient named Lelia:

“When I first met her, she was sitting alone in a dimly lit room she shared with three other women. Her blouse was unbuttoned, exposing one sagging brown breast and a wormlike scar where her other breast had been removed. Depression embraced her like a close friend. A wary look in her eyes told me she had no place for a hospice volunteer on her agenda.

“What’s that, you say you a hospice volunteer, and you want to come see me every week? No, I don’t need to see you. I have enough visitors,” Lelia complained shortly after I arrived. Her tone reeked with annoyance at my intrusive presence in her gated world.

“Lelia, I came by to see you today because I hoped we could get to know each other better. I was thinking that I might be able to help you in some way, maybe with a problem or something.”

“No, I got enough help. Like I said, I don’t need to see you. I don’t need to see nobody. I just want to be left alone.”

© Frances Shani Parker

So much for making me feel welcomed. Fortunately, I was able to win Lelia over and have a very interesting relationship with her. Her story is one of my favorites.

What does research say about dying people wanting hospice-palliative care volunteers? According to the “The American Journal of Hospice Palliative Care" research at Mount Allison University yielded the following results using 100 adults:

Participants were asked to imagine they were terminally ill and told about services volunteers could provide. Finally, they were asked if they would want a volunteer and why. Eighty-nine participants wanted a volunteer, mostly for general support and lack of nearby family. What about the other thirty-five? Some sounded just like my patient Lelia by saying they didn’t need help. Other reasons included being private people.

In the total group, sixty-five participants were aware of the volunteer program. Among those who were not aware, 89% expected their family doctor to inform them of the program. These results indicate a need for more patient information regarding the availability of hospice-palliative care volunteers.

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