Massage Therapy in Hospice and Palliative Care (Research, Video 3:35)

When I reached over and held my hospice patient’s hand, she smiled saying, “Now, that’s nice.” This simple meeting of skin and energy represented her treasure for the day, week, month, or whatever amount of time had passed since her last encounter with physical affection from another human being. For many patients in nursing homes, these moments seldom came.

Although little research on the use of touch with older adults has been done, it is obvious that touching can be a positive form of communication. But touch can do so much more. When used during massage therapy with older adults, particularly those receiving hospice-palliative care, touching can improve their quality of life significantly on several levels. The Gerontology Department at the University of Kentucky compared self-reported health outcome scores among older adults regarding their use of massage therapy. Those who reported massage therapy usage in the past year had significantly better health outcome scores in the following domains:

1)  Emotional well-being 

2)  Limitations due to physical issues  

3)  Limitations due to emotional issues

These research results reinforce the beneficial role massage can play in hospice-palliative care.

This video from Everflowing showcases a touch exercise during a hospice caregivers’ training workshop. Irene Smith, who believes the healing of touch is reciprocal, narrates “The Language of Touch.” 

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

Reluctant End-of-Life Caregivers: Would You Do It Again? (Research, Video 3:10)

Most people don’t set out to become caregivers. Some enjoy nurturing loved ones and find the caregiving experience challenging, but rewarding. Few people talk about caregivers who feel depressed, guilty, trapped in a hole with no way out except the death of persons in their care. Maybe they were the only sibling living near the parent, the only relative or friend with resources to provide care, or the only person willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of the situation. If they had a choice, would they do it again? Some say they would not.

In a study reported in the “Journal of Pain and Symptom Management,” factors associated with an unwillingness to become caregivers again were reviewed. Former caregivers of palliative care patients were interviewed. Comparisons between those who would do caregiving again and those who would not were made with these results:

1)   One in 13 (7.4%) former caregivers indicated that they would not provide such care again.

2)   One in six (16.5%) would only "probably care again."

3)   Increasing age and lower levels of education controlling for spousal relationship lessen the willingness to care again.

4)   Despite most active caregivers being willing to provide care again, a

proportion would not.

This Visiting Nurse Service of New York video titled “How to Relieve Stress When Caring for an Aging Parent or Spouse” presents ways to cope with caregiver stress.

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

Diabetic, Hospice Amputee Outruns Death: “World Champion” Poem

Skoney, a diabetic amputee who was also mute and partially blind, epitomized “down, but not out.” My hospice volunteer experiences with him at the nursing home inspired me to write “World Champion,” a poem about his long-distance death journey. Although Skoney endured several close calls with death, he repeatedly overcame them until he eventually died one day. Observers couldn’t understand why he didn't give up sooner. Didn’t he know that death would make him free? Because he had no legs and was such a determined survivor, I viewed him as an Olympic marathon runner.

World Champion

Your bedridden body

wins survival marathons,

breaks records in life's

Olympic Games.

I touch your skeletal chest,

feel spirit of an aging heart

that outruns the Grim Reaper

in back-to-back wins.

Some pity your amputated legs,

anguished moans, unexpected

comebacks when death

competes with bare existence.

No one claps or cheers

for your personal-best pace

toward the final race

when you clear each hurdle.

They don't understand

why you won't give up

when you defend each challenge

to clock more blocks of time.

Your laps for life press onward

as you struggle to the finish,

grin like a World Champion

each time you grab the gold.

© Frances Shani Parker

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 editions at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Quality of Life for the Oldest Old With or Without Dementia (Quiz, Research, Video 1:06)

How happy will you be when you’re 100 with or without dementia? Little research has been done regarding the quality of life of the oldest of the old, particularly those with dementia. With more people living longer, information concerning this age group is becoming more of a priority. Due to their interactions and observations of those aging in their care, caregivers can also add insightful information on this topic.

The following questions are worth considering regarding this geriatric population. See if you can guess the answers after you read the questions:

Do the oldest old perceive their quality of life as good or not so good?

Are their perceptions of quality different from or the same as the perceptions of their caregivers?

What if the oldest old have dementia? Do they perceive their quality of life as better or worse? Do their caregivers agree or disagree with the oldsters’ perceptions?

If you were guessing the answers as you read the questions, you may be surprised by the results of a Mayo Clinic investigation involving 144 community dwellers with mean ages ranging from 93 to 94.

Research Results:

Although the overall functional ability was higher in groups without dementia, all subjects reported high overall quality of life.

And the caregivers? Caregivers perceived the subjects' overall quality of life to be lower with increasing severity of dementia. The difference in subjects' and caregivers' perception is more pronounced for the groups with dementia. Apparently, quality of life is more strongly correlated with depression than with dementia severity.

The photo above showcases Mississippi Winn, a 113-year-old woman who was believed to have been the oldest living African-American in the country and the world's seventh-oldest person. She died January 14, 2011. This video features a reportedly 130-year-old Russian woman named Antisa who may have been the oldest woman in the world at one time.

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

Family and Friends Rate End-of-Life Patient Care in Nursing Homes (Research, Hospice Video 1:00)

As much as people say they plan to die at home, most are dying in hospitals and nursing homes. What roles do family and friends who are patient advocates play? How do they feel about their experiences while their loved one is dying? Answers to these questions were topics for research at Brown University.

Telephone interviews were held with 54 close family members or friends of individuals who had spent at least 48 hours in the last month of life of a loved one in a nursing home. Respondents described the last year of life with the deceased loved one and their nursing home experiences.

These were the key themes of their areas of concern:

1)   Families often felt the need to advocate for their dying relative because of low expectations or experiences with poor quality nursing home care.

2)    They noted staff members who did not fully inform them about what to expect in the dying process.

3)    Respondents reported burden and gratification in care they themselves provided which sometimes entailed collaboration with staff.

4)    Interviews also identified ways hospice care impacted families, including helping to relieve family burden.

These themes highlight the urgent need for a reduction in the family’s burden at this critical stage of caregiving a dying loved one. Also needed is improved communication so families can be better prepared at the end of the loved one's life. This includes more information about hospice care. The family’s trust in the nursing home depends on how these supports are enhanced to make their experience with a dying loved one beautiful for everyone.

This one-minute video titled “PSA #9 Nursing Home Hospice QT.mov” is funded by the Pennsylvania Department of Aging and produced by the Take Charge Partnership. The scenario presented introduces a family member to hospice care for their loved one.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” (paperback, e-book)

“Hospice and Nursing Homes Blog”