Hospice Elders Need Control Opportunities During Dying Process

Control, we all crave it on some level. When it’s not there when we want it, our spirits feel stifled. Even toddlers will assert themselves when they feel their power slipping away. What about control needs of terminally ill elders in hospice care? Do they strive to exercise control over aspects of the dying process? Research says they do.

The School of Social Work at the University of Wisconsin-Madison explored this issue through in-depth face-to-face interviews with 84 terminally ill elders receiving hospice care. Interestingly, all 84 elders used at least one primary control strategy.  83 of them practiced one primary control strategy in combination with anther primary or compensatory secondary control strategy. Aspects of the dying process that they sought to control were these: Decision making, independence, mental attitude, instrumental activities of daily living, activities of daily living, and relationships

Although over half of the elders wanted more control, they felt their illnesses prevented them from having it. How frustrating might that be? What do these results say to caregivers of terminally ill elders? They say that these elders are just like everyone else in wanting to feel empowered. These results remind us of how important it is to be sensitive to control needs of terminally ill hospice patients. Even as they are dying, they still need opportunities to be proactive in their everyday living.

Frances Shani Parker, Author

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

“Hospice and Nursing Homes Blog”

Homophobia in Nursing Homes, Long-Term Care, Assisted Living, and Home Care (LGBT Video 4:01 mins.)

Life can be horrendous living in a community where you are excluded and harassed. This is the experience of many elderly lesbian, gay, bisexual, or transgender (LGBT) people living in nursing homes, long-term care, assisted living, and even those receiving home care from healthcare workers. Consider how you would feel being dependent daily on bigoted caregivers who resent your presence. Imagine being isolated socially by fellow residents regularly or only being included because you hide a major part of your identity. Either way, damage to your emotional and physical health can be devastating.

The “Michigan Daily” reports that LGBT elderly increasingly have been “disrespected, shunned, or mistreated in ways that range from hurtful to deadly, even leading some to commit suicide.” Important solutions to this problem include a national drive to train long-term care providers in equitable and compassionate care, and a move for separate, but equal care.

Implementation of culture change in senior institutions requires sensitivity and commitment to the creation of person-centered environments that welcome LGBT residents. As this award-winning LGBT documentary titled  “Gen Silent” explains so well, no one should have to live in fear in order to survive. What kind of quality of life is that?

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

Prison Inmate Hospice Volunteers: Iowa State Penitentiary

People are more than the worst things they ever did.

Each year, more than 3,000 men and women die in prisons. It is estimated that 20% of America’s prison population will be elderly by 2025. Many will eventually need quality end-of-life care. Some will ask, “So what? Did these prisoners treat their victims with dignity? Why be concerned about their death journeys?” One response is that people are more than the worst things they ever did. Another is that society should be held to a higher standard of treating prisoners better than they treated victims. At several prisons, inmate hospice volunteers are providing comfort to terminally ill inmates.

“Sail to Serenity” by Edgar Barens is the hospice prison program at the Iowa State Penitentiary. Some patients may no longer have attentive relationships beyond prison walls. Many serving life sentences, including some who are hospice volunteers, know they will die in confinement. Nurturing support given by familiar faces of those who have also experienced the prison system can enhance prisoners’ quality of life during the dying process. 

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

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”

Elderspeak in Nursing Homes: Sweetie, Can We Talk?

Elderspeak is a form of baby talk that most adults would not ordinarily use in conversations with other adults. As a hospice volunteer in nursing homes, I noticed elderspeak being used often with older residents, especially those who had dementia. For example, “Hi, Mr. Smith. I hope you’re enjoying your day? Did you have a good dinner?” might become a singsong version of, “Hey, Handsome. Are you behaving today? Did you eat all your dinner veggies like a good boy? You did? That’s my baby!” Imagine what an everyday adult would think about being addressed in this manner. But some nursing home staff members, caregivers, and others think nothing of speaking to residents in this manner. Unfortunately, stereotypes about the elderly often result in adults using elderspeak when speaking to seniors in general, regardless of the location.

Use of elderspeak implies that the resident is not competent enough to be spoken to on an adult level. Even when residents get used to being spoken to in elderspeak and seem not to mind, their self-esteem may be lowered. In addition, using elderspeak perpetuates stereotypes about the elderly and encourages ageism. Elderspeak research by the University of Kansas School of Nursing reports that elderspeak use by nursing home staff increased the probability of resistance to care in older adults with dementia. These residents responded frequently with screaming or yelling, negative comments, and crying. It is far more helpful to respectfully use adult speech with clarity, while keeping in mind the uniqueness of each individual.

Born and raised in the South, I was taught at an early age that all adults were entitled to the respect of being called by their formal names, such as "Miss Jones." Imagine my shock as a teenager the first time I was allowed to drive a car to pick up my grandmother from her job as a cook at a segregated white school. Young students of all ages were calling her "Lou." She allowed it because she needed the job. But the embarrassment in her eyes when she saw me witness this will never be forgotten. That night, my mother told me I couldn't pick up my grandmother from work anymore. For many older African Americans, being called by their first names or nicknames without their consent carries painful memories of historical racist condescension.

You can read researched elderspeak views of certified nursing assistants (CNAs) here.

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 booksellers such as Amazon.

Hospice and Nursing Homes Blog