Caregiver-Patient Joy (Dementia-Music Poem)

When caregivers approach patient care with win-win expectations, they can be surprised by them at any time. Meaningful conversations and feelings drift into a now/here place that are not forced, but still joyous and explosive moments. Many times the experiences are subtle, quiet with a settled satisfaction that brings whispered gifts of personal knowing about life lessons that strengthen the bond between caregiver and patient. One reason some people assume caregiving is always depressing is that caregivers don’t share their joyful caregiving moments enough with people who are unaware of powerful scenarios that occasionally occur between caregivers and patients.

I recall a few of the very special moments I have known as a bedside hospice volunteer caregiver in Detroit nursing homes. This poem describes one of my favorite caregiving moments. I had a very challenging patient whose name was Katherine. She usually lay in bed sleeping or looking up at the ceiling. I couldn’t tell if she was bored, unhappy, mellow, or all three. Rarely speaking, she never sat up on her own or walked. We mostly stared at each other while I talked. But I kept trying to think of ways to climb over the walls that separated us. That was my challenge as her volunteer.

Knowing that Katherine had been active in her Baptist church in the South at one time, I decided to use my CD player (old days) with headphones to help her enjoy music sung by Mahalia Jackson, whom many hail as the greatest gospel singer ever. After reading this poem, you’ll understand why it’s one of my favorite caregiver-patient joys and why I still smile every time I read it. If you have a special caregiver-patient moment of joy, share it so others can smile with you.

                          Sounds of Ecstasy

Headphones frame your head.

You look at me, your volunteer,

wonder what they can be.

Mahalia Jackson’s song erupts,

“When the saints go marching in...”

Sleepy eyes widen like popped corn.

“It’s a CD player,” I say.

Your mental video rewinds

through time from the nursing home

to an Alabama church service

where bodies rock to music.

I join you clapping with the choir.

Your stiffened hands move

with a powerful energy that rises

like a resurrected hot flash.

“It’s wonderful,” you whisper.

Mahalia responds singing,

“Walk all over God’s heaven...”

I picture you joking with Death

when it’s your time to holy dance

to the Other Side of Through.

Mesmerized by the music,

you soak in every song.

A CD player exhilarates you

with sounds of ecstasy.

Such an easy thing for me

to bring, but before I leave,

you say you love me twice.

                  © Frances Shani Parker from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes (an original poem after each   chapter)

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

Caregiving with Sensitivity: Semi-Sensory Deprivation and The Virtual Dementia Tour (Video 3:04 mins.)

I have been a big fan of semi-sensory deprivation training for some time. For example, lack of eye care for nursing home residents is widespread in America and greatly impacts these residents’ quality of life. It’s only logical that if volunteer participants could wear glasses or goggles that have lenses smeared, so their vision is blurry, they can arrive at a better understanding of what patients with impaired vision experience. Simulations impairing speech, smell, taste, hearing, walking, talking, eating, touching, etc. help others really experience what patients are going through on a daily basis, and they provide great discussion. Nursing homes, hospitals, and medical schools are supportive of providing these experiences.

Because family members care for most patients with dementia, it is important that family caregivers develop more sensitivity to patients’ experiences. One example of training to improve their sensitivity is The Virtual Dementia Tour. This training developed by P.K. Beville for Second Wind Dreams “helps sensitize families to the needs of their loved ones” by helping them see, feel, and hear in ways similar to the experiences of an elderly person with dementia. Second Wind Dreams® is a national non-profit organization based in metro Atlanta.

In this video about the Virtual Dementia Tour, participants perform everyday tasks such as matching socks while wearing the following:

1) Dried corn in their shoes to simulate arthritis
2) Gloves with taped fingers to simulate declining age
3) Goggles to simulate impaired vision
4) Headphones to simulate background noise distractions that interfere with patients’ focus

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