Male Caregiver Interview: Frances Shani Parker and Frank Gasiorek

                               

                                     Catherine and Frank Gasiorek

I met Frank Gasiorek during a time when he was devoted to taking care of his ill mother who died. Like millions of people carrying personal stories others will never know, he told me he was a caregiver after I happened to mention my involvement with eldercare. According to AARP, the typical caregiver is a middle-aged woman caring for a relative, often her mother. Nowadays, 40 percent of the 40 million Americans caring for loved ones are men. They may accept a caregiving role while having little experience and may be less inclined to reveal their problems to others. 

From my conversations with Frank, I began to view him as an excellent role model for caregivers in general, especially men. In this interview with me, he shared his caregiving journey:

1)   Frank, how did you become your mother’s primary caregiver?

I began my role as my mother's primary caregiver due to being an only son with siblings living out of state. Also, having a strong bond with a person who was a dedicated single parent and mentor during my early childhood years gave me the desire to give back and return the service.

2) What concerns do you think are unique to caregiving of a parent by an adult child, especially one of the opposite sex?

Sometimes different interests and backgrounds may be factors.  However, the realization that I only get one of these, a unique person and mother, is important. As the years passed and more personal care and attention were needed, my mother stated she did not want to live her final years outside of her home. She also did not want outsider care assistance.   

Acceptance of my role as a male caregiver had to be addressed. No longer am I the son. I had to explain to my mother that, when I step in as the caregiver, she needs to respect the care she receives. I am the professional person providing home care. There have been times when she returned from the hospital and then to rehab and back home. I did contract some part-time assistance with homecare nursing for the short term. 

3) Has your being a male made you less prepared or efficient as a caregiver?

Having worked previously within the healthcare system has exposed me to the assistance that comes with caregiving. In addition, having been rooted in human sensitivity has provided me with a foundation to complement the needs of the healthcare person.

4) What are some resources that you have found to be especially helpful and that you would recommend for others?

Always consider the local church, community and city services that offer guidance and support. Public and private agencies are easy to research via the Internet.

5) Do you communicate regularly with other caregivers for support?

Having a network of colleagues associated with caregiving is essential to maintaining balance. A support group with other caregivers creates a bond of positive feedback. Primary physician support staff members are often good individuals for consultations. 

6) Caregiving can be stressful and socially isolating. Have you experienced this? If so, how do you cope with these challenges?

My network of support helps to keep me balanced when I experience challenges. We allow one another to vent our daily drama of caring for loved ones.

7) What rewards have you enjoyed as a caregiver?

Spiritually satisfying, caregiving brings the joy of assisting another person for the common good.  Keeping a person exposed to dignity and love is uplifting to the spirit.

8) What advice would you give to other caregivers now that you understand what this responsibility entails?

Caregiving is not for everyone. Caregiving is not easy.  Caregiving takes planning and involves orchestrating many daily human needs of an individual. Always maintain space between caregiving assignments and appointments to recharge.

9) How can those who are not caregivers support those who are?

Financial support would seem to be the easy answer. Nonetheless, periodic backup team members who are not caregivers can greatly assist primary caregivers. For example, team members can provide helpful phone calls to caregivers and homebound individuals.

 

   10) Do you have any final words?

Caregiving is a rewarding experience. As our mature population continues to live longer and more independently, there is an increasing need for caregiving at different levels. Respect for life must be admired, honored and planned for to create quality life.

Frank, thank you for sharing your caregiver experience. Your firsthand knowledge will be beneficial to caregivers, patients and many others involved in improving quality of life for those in need of caregiving assistance.

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 paperback and e-book forms at Amazon booksellers. Visit my website at www.francesshaniparker.com.

Cremation Pros and Cons

Cremation is definitely in the mainstream these days as a method of body disposal. People are finding interesting ways to dispose ashes or cremains of loved ones. Traditionally, cremains are often stored by families who keep them in urns and other containers that vary in their uniqueness. These may include vases with pedestals or even personalized teddy bears with hidden pouches. Teddy bears can be sewn from the deceased person’s clothes. Among other uses, cremains are being used in jewelry, shotgun shells, and fireworks. In terms of destinations, cremains can be stored in cemetery plots, mausoleum, or scattered in a garden or body of water. They can even be sent aloft into outer space into luna orbit.

But love for cremations is not embraced by everyone. Even though they are cheaper than traditional burials and better in terms of ecology, some view cremations as morally inadequate. They believe cremations include "the destruction of community memory, and, by extension, community and individual identity. Cremations deprive the living of these benefits, while also treating the dead in a way which goes against common intuitions about personhood, anthropology and respect for the will of the deceased.” They believe death and the corpse are too important to be marginalized by cremation, depriving individuals and communities in terms of social ethics.

Like many other death-related practices, people should make plans in advance regarding disposal of their bodies in a manner they approve and want. If cremation is selected, they should also plan for disposal of the cremains. This includes making sure they are following the law regarding where they do the disposal. Disposal at Disney World and Disneyland, a popular trend for some, has become a nuisance for others.

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, Frances Shani Parker's Website

Can Volunteer Service Choose You?

                    

If you are a volunteer, have you ever thought that you didn't choose volunteer service, but that it chose you? I have been a hospice volunteer for twenty years, most of them in urban nursing homes. But I can remember when I dreaded being around sick people. Mostly, I felt I didn't have skills to do the right things in a healthcare environment where somebody might get hurt if I messed up. Once in high school as part of a school club, I visited a nursing home where I fed a woman jello. Years later, jello still reminded me of her and the nursing home, but not in a good way. Volunteering with sick people? Nope, no way! Not me!

So what changed me? Life did. During the 90's, AIDS caused by the HIV virus was like a pandemic in the LGBTQ community. Infected people were often ostracized, criticized, demonized, and dying. I was principal of an urban public school in an area of high poverty, crime and homelessness. Although I had plenty to do on my crowded plate, I felt right at home. However, over a three-year period, I was thrust into life-threatening dilemmas of two gay men I hardly knew. They were my introductions to long-term care of the terminally ill.

Jake, who was in his 30's, came around to talk sometimes after school dismissal. He was showing signs of dementia. He complained about being harassed by invisible people all the time. His boyfriend left him, and he had no family support. I knew he couldn't navigate the healthcare system alone. Eventually, I convinced him and his unseen tormenters to pile into my compact car, buckle up, and let me drive everybody to the hospital where Jake was admitted immediately. Later, he was placed in a nursing home that he said the invisible people did not like. They left, but I looked out for him until he died several months after that.

I thought that surreal scenario would never happen again, but it did a few months later with a man named Sam who was in my exercise class. I didn't really know him, but I asked him what was wrong when I saw him crying in the parking lot one day after class. He told me he had AIDS and had just lost his job because he had missed too much work. He had little family support because they knew he had AIDS and were reluctant to be around him or go to his house. I found him an HIV-AIDS support group which he loved, helped him on his medical journey, and learned more about healthcare and myself in the process. I believe good service is always win-win when I am open to my own growth. Fortunately, his condition improved greatly when better medications became available. 

Several months later after Sam had moved on, I met a friend I had not seen in quite a while who told me she was a hospice volunteer. I actually asked her what a hospice volunteer does and was surprised when I realized that was what I had been doing with the two men. I had been a hospice volunteer all that time and didn't even know it. A few weeks later, I saw a newspaper ad recruiting people for hospice volunteer training. I decided to take the classes and become certified  in case another very ill person showed up in my life. 

Of course, the rest is history. Terminally ill people have come into my life often as patients assigned to me in various nursing homes where I have experienced compelling challenges and satisfying rewards. My book, Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes shares captivating stories, original poems, and more about the nursing home world and hospice volunteering that chose me.

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. Frances Shani Parker's Website

Hoarders: Who? Why? How? (Blog Video 3:39)

Hoarding can be described as a disorder characterized by excessive acquisitions and persistent difficulty in discarding possessions. These possessions can be alive or not. This disorder continues to be a serious problem for many people that you may or may not know are hoarders.

While you may think a hoarder would be somewhat embarrassed by terrible living conditions, that is not always the case. I discovered this when a friend I didn’t know was a hoarder actually invited me inside her one bedroom apartment in the building where we both lived. She displayed no shame at all about her accumulated chaos. 

The entry hall was so packed with stacks of “stuff” that only a narrow passageway remained. This path bordered by mounds of boxes, old clothes (some that she said her mother had saved from her childhood), unopened TV purchases and other clutter was overwhelming.  When two cats came running to greet us, I was in shock. Unsanitary and dangerous living conditions such as these, particularly for older adults, puts them at increased risk for fire, falling, disability, and other health risks.

A systematic study by two reviewers of the literature to determine the possible causes of hoarding suggests that individuals with hoarding behaviors may have a genetic susceptibility or abnormal neural activity in the brain. Traumatic life experiences may also predispose individuals to hoard.

In the following video, the unsanitary conditions at a California home caused the owner to become sick and hospitalized. “Inside Edition,” a television show, features Jim Moret suited up to go inside with the crew assigned to clean the space. A New York woman's hoarding problem extended beyond the walls of her house and into her front yard concerning her neighbors. Animal hoarding is also included in this video.

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. Frances Shani Parker's Website

Older Adults and Robotic Dogs: Meet Aibo

Imagine wanting a pet dog, but knowing you don’t have the time, living space, or the energy required to walk and play with it as regularly as its needs require. Many older adults who fit that description might benefit from a robotic dog that responds to them in ways that alleviate their loneliness and soothes their cravings for love and attention. Years ago, I learned that such a dog existed in the form of Sony’s robotic dog named Aibo, which was being tested in nursing homes.

I was so impressed with the pleasing possibilities this little charmer could bring to older adults, especially lonely ones, that I included a robotic dog story in my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. In the chapter titled Baby Boomer Haven, a resident takes the reader on an imaginary tour of a nursing home based on best practices including a a robotic dog: 

“Watch out for Diva Dog over there, one of several resident pets. She’s just looking you over to make sure you look her over. In her spare time, she’s a certified psychologist. For residents who prefer the convenience of a responsive robotic pet, we have two mechanical dogs that operate with artificial intelligence. They provide playful companionship without the need for feeding, walking, and cleaning up after them. The best part about the robotic dogs is that the more residents interact with them, the more responsive the dogs become to the residents. All the animals here are like our extended family.”

Robotic dogs are also used in therapy for residents living with dementia.

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. Frances Shani Parker's Website

Personal and Family Caregiving Issues

Caregivers often have complicated roles that can include love, hatred, guilt, joy and resignation. People become caregivers for different reasons, and the reasons are not always their own preferences. During my years as a hospice volunteer, I have spoken to many caregivers. They shared their stories. These are three examples from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.

1) “We held a family meeting when Mom and Pops continued to deteriorate in their health. They had reached the stage where they couldn’t live alone any longer. Mom almost burned the house down, and Pops started roaming all over the neighborhood asking people where he lived. At the meeting, everybody had reasons why they couldn’t be primary caregivers. They either lived out of town or had other obligations they said interfered. Several of them mentioned that I lived in town and didn’t have as many responsibilities as they did. I don’t know how they could make assumptions like that about what’s going on in my life. I don’t tell them most of my personal business. Anyway, I finally agreed to be the primary caregiver, but only if they would all make a written commitment with me. We made a list of what everybody would do to help on a regular basis. I can truthfully say they all are doing what they promised, including contributing money to our parents’ care. Knowing I can always count on them helps me a lot and makes my parents proud of the way we are handling things.”

2) “If you look at who’s taking care of my daddy now, you wouldn’t know he had three other children besides me. The others hardly do anything for him, and I’m always asking them to help out. Before you start thinking he was a bad father when we were growing up, let me tell you he wasn’t. If you want to know the truth, he was too good to us. My trifling sisters and brothers just took him for granted. Now they know Daddy is confused with Alzheimer’s disease, so they use that as another excuse not to come see him. They figure he won’t miss them. My siblings are a disgrace. Everything is on me.”

3) “My mother was the kind of person who never should have had children. She was into drugs and the fast life for as long as I can remember. As a child, I prayed for her to change, but she never did. She left us alone a lot, even at night. Finally, my grandmother stepped up and raised my sisters and me. Bless her soul. She died six years ago. We made sure she didn’t want for anything. My mother is dying now, and I’m the only one who will go see about her. My sisters say she’s getting what she deserves for all those years she chose dope over us. I don’t judge them because I know how they feel. I’m still angry with her myself, but I come see about her anyway. I guess I want to be a better person than she is.”

Most people don’t set out to become primary caregivers. 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. Millions of people provide care to an ill or disabled adult. While many embrace their responsibilities and welcome the chance to serve others, there are also many who feel alone and abandoned. Caregivers all need ongoing support to be effective as caregivers and as healthy people themselves. Assistance is available from your city and state agencies. AARP assistance is available for caregivers at this website and these phone numbers: aarp.org/caregiving 

Phone: Toll-Free Nationwide: 1-877-333-5885

Toll-Free Spanish: 1-877-342-2277

International Calls: +1-202-434-3525

TTY user dial 711
    -English: 1-877-434-7598
    -Spanish: 1-866-238-9488

Hours: Monday - Friday from 7 a.m. - 11 p.m. ET

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.
Frances Shani Parker's Website