Although many caregivers are actively involved in patient care for a considerable amount of time, they may not be confident or knowledgeable sometimes about the specifics of caring for someone else while maintaining their own quality of life. In addition, thoughts of preparing for a loved one’s death and their own future bereavement after the loved one dies often lurk in the background of their daily living. Healthcare providers can be a great source of support and information for caregivers in terms of confidence building and advisement.
The National Family Caregivers Association shares the following four-point message of advice for caregivers:
1)Believe in yourself.
2)Protect your health.
3)Reach out for help.
4)Speak up for your rights.
In this video titled Caregiving: What Can I Do About It?, caregiving advocates share information on quality caregiving and how it impacts lives.
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.
New Grandparents Mitch and Lonnetta White with Amelia
Becoming grandparents for the first time can be quite spectacular, especially for older adults. My friends Lonnetta and Mitch White recently began this wonderful journey just in time for Grandparents Day on September 9th. Their contagious excitement over the birth of "Miss Amelia" prompted me to feature them on this blog. Not surprisingly, they were eager to share their pride, joys, concerns, and expectations in this interview.
Lonnetta (L), Mitch (M)
1) What were your thoughts as you anticipated the arrival of your first grandchild?
L
I have/had feelings of extreme happiness, joy and excitement!
My thoughts were fantasies of how wonderful it is going to be to love and spoil a grandchild the way I was loved and spoiled by my paternal grandmother.
M
I remembered the anticipated arrival of my son.Of course, in those days we didn’t know if we were having a girl or boy. The imaging technology simply hadn’t gotten that far. But I was there in the delivery room and had the privilege of seeing Amelia when she emerged from the delivery room. What a wonderful opportunity!
2) Howdid you feel during the first days after Amelia was born?
L
I felt proud and on top of the world. I was also pleased that she was FINALLY here, healthy and absolutely gorgeous! I felt blessed to see, hold, kiss, cuddle, and in all ways experience my granddaughter.
M
Elated. In wonder of this child who came here with her eyes wide open.
3) What do you love most about this new chapter in you life?
L
Life is good! Optimism is a constant companion and more easily accessible. My existence has given me a new lens through which I view the world. Every time I think of her I find myself smiling!
M
She’s been here before!
4) Grandparents are an important influence in their grandchildren’s lives. How does
Amelia influence your life?
L
I brag incessantly. I now have a subscription to a magazine on parenting. In addition, I read all articles about babies and parenting. I want to do all that I can to help her to be the best at whatever it is she wants to be.
M
I am the proud grandpa who never loses an occasion to show the latest picture or video of Amelia. She’s the most observant child I have ever seen. I just want to be called Grampa, not Grandpa, but simply Grampa.
5) What concerns do you have about Amelia growing up during this particular time in
American history?
L
I am concerned that she be afforded opportunities to be whoever and do whatever she wants in a peaceful, clean, and politically just world. I am also concerned that her gender and race not be deficits. My ultimate wish is that she be healthy, confident, happy, and successful.
M
All of American history has its challenges. Amelia comes to us at a time when inequities are in full force, but she is fortunate to come from a family of modest economic means. She has a powerful enclave of parents and grandparents to help her in her development.
6) Atan early age, children begin to internalize negative stereotypes about older adults.
Many grow up to become the stereotypes themselves. How will you help Amelia
understand that negative stereotypes about older people are not true?
L
I will provide experiences and conversations that allow and encourage her to be less judgmental, more open-minded, and optimally tolerant and respectful of everyone, regardless of age.
M
Amelia will learn this from the warm and supportive cocoon of her parents with occasional intervention from her aunt and grandparents.
7) Interms of character building, what role will you play in encouraging Amelia
to become a proactive person who cares about improving society?
L
I believe Amelia’s parents are proactive individuals who respect and care about themselves and each other. They will be her first role models. My hope is to teach her by example that she can influence her world by being a competent leader.
M
I don’t know about Amelia becoming a “proactive person who cares about improving society,” but I do know I'd like to see her become very aware of herself, her own capabilities, and her ability to share with others. I believe that if you learn the lessons of sharing, you learn how to help and respect others.
8)What advice do you have for other grandparents in making their grandparent
journey successful?
L
LOVE, LOVE, LOVE your precious little ones! Enjoy, enjoy, enjoy! Encourage and support them in their endeavors to become happy, successful adults.
M
I’m too early in this wonderful adventure to offer advice to others, but I do know that, whether you’re raising a child or supporting your grandchildren, it’s extremely important to show them love by attending to their needs, teaching them to share, and helping them to grow beyond themselves. Right now, Amelia is understandably egocentric. The world is her oyster. Getting her in another structured environment is the next step towards preparing her to interact with the world. She’ll be ready sooner than we think. She’s been here before.
Lonnetta and Mitch, thank you so much for your insightful responses to these questions on grandparenting. Happy Grandparents Day! Of course, our interview would not be complete without Amelia having her say. After all, she’s the reason you became Granny and Grampa. Welcome to the world, Amelia!
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.
Frances Shani Parker, an eldercare consultant, former school principal, hospice volunteer, and author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes, was featured guest on Aging Well in America, a television show hosted by Anne Marie Gattari. The interview covered these topics:
Hospice
Nursing Homes
Volunteering
Caregiving
Dementia
Death Preparations
Intergenerational Partnerships
Older Adult Stereotypes
Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homesis available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.
Caregivers who embrace patient care with win-win expectations know that aha moments can come at any time. Meaningful conversations and feelings drift into a now/here place that helps us worm our way from the unknown to the known. Aha moments are not forced or always joyous and explosive occasions. Many times they are subtle, quiet with a settled satisfaction that brings whispered gifts of personal knowing about life lessons. One reason some people assume hospice work is depressing is that our aha moments with patients are not shared enough with people who are unaware of powerful scenarios we experience sometimes.
Recall a few of the aha moments you have known, especially those that made you better people. Many of you have had them. Share these enlightenments with others who wonder why you do this work or those who express a general interest in what your work entails. Aha moments can enhance lives of patients and caregivers.
This poem describes one of my favorite aha moments as a hospice volunteer. 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.
Knowing that Katherine had been active in her Baptist church at one time, I decided to use my CD player with headphones (this was before iPods, etc.) 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 aha moments and why I still smile every time I read it. Share your aha moments with others, and you’ll be smiling, too.
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homesis available in paperback at many booksellers and also in e-book form at Amazon and Barnes and Noble booksellers.
Meet Care-O-Bot and CASERO, two German robot brothers that can provide needed services in long-term care facilities. Care-O-Bot is a robot assistant, while CASERO is an automated guided vehicle system. Previously, I shared information with you about Nursebot Pearl, a robot that services patients in private homes. She has a caregiving voice and an emotional face with interchangeable parts.
Through robots, technology strives to meet the needs of our growing population of older adults who are living longer with healthcare concerns.Of course, expensive robots will never replace compassionate and efficient healthcare workers. But they can provide services that allow healthcare workers to have more time with residents and enhance quality of their lives. Depending on the degree of dementia, robot trials indicate that people with dementia can accept robots and be amused by them.
What about our two robot brothers and some of the services they perform? Care-O-Bot, the younger of the two, can enter a room, introduce himself, pass out drinks, and even keep track of who drank and how much. With colored cameras used like eyes, this robot can recognize and respond to individual faces, play games, and lead residents in singing. CASERO, a more developed robot, uses its multiple cameras to monitor hallways and transports objects by guiding itself, sending for an elevator, and riding it to another floor. Change is slow, and, while everybody may not love service robots, many people do. You can read more about both robots in this article about service robots.
This video titled Service Robots in Nursing Homes: Care-O-Bot 3 and CASERO shows the robots in operation at Parkheim Berg, a nursing home in Germany:
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.
Can you answer these four questions about dementia? View answers below the dementia daycare video.
1)Where do most people with dementia die (home or institution)?
2)Name two illnesses people with dementia usually die from?
3)What is the second most common form of dementia affecting older adults after Alzheimer’s disease?
4)Name two reasons dementia daycare is beneficial for caregivers and people with dementia.?
This video titled KRIV 26 - Sheltering Arms for Dementia Patients.flv supports not only people with dementia, but also those with several other impairments. It gives an overview of the kinds of activities that engage participants and improve their quality of life at daycare programs.
Answers (Good luck!):
1)(Death Location) A widespread myth is that most patients with dementia live and die in nursing homes. Many people think that as the disease progresses, most patients go from home to hospital to a nursing home and stay there, but dementia patients make various transitions in care, following no definite path.
2)(Death Illnesses) People with dementia, including advanced dementia, usually die from cancer, heartdisease or pneumonia.
3)(Dementia 2nd) Dementia with Lewy bodies or Lewy body dementia is the second most common form of dementia to affect older adults after Azheimer’s disease.
4)(Daycare Benefits) Dementia daycare programs allow people with dementia to continue living at home. They provide beneficial individual and group activities and additional support services. Caregivers enjoy having more time for themselves without worrying about loved ones’ safety and quality of life.
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.
Photography is such a fascinating process. Capturing that special something which means more than words can ever say by themselves connects people at a guttural level of humanity. What if you are a healthcare worker giving ongoing caregiving support to patients as part of your job? What would you want to capture in photos to show the world what you really want to convey about your relationships with patients? How would you envision a photograph of compassionate caregiving and an accompanying story about your interactions with patients?
Research on compassionate caregiving was done by the University of North Carolina, Charlotte. The study was designed to understand the views of direct care workers and included 15 nurse aides and medical technicians working in an assisted living and special care assisted living community for people with dementia. Participants were given digital cameras to create photographs showing what caregiving meant to them. Discussions, photographs, and written and oral stories revealed participants’ perceptions about their essential relationships with patients, not their required care relationships.
Like all direct care workers, doctors are also expected to demonstrate compassion in their care of patients. University of California San Diego Medical School is preparing aspiring doctors for practicing caring skills. In this video titled Putting The Care Back Into Health Care, KPBS Health Reporter Kenny Goldberg shares a compassionate care story of medical student Pritha Workman.
Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homesis available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.
A sun has set. Someone has come face to face with the Other Side of Through.
This checklist includes tasks to do immediately after death:
Some airlines have bereavement or compassion fares available for family members traveling for an imminent or actual death. These fares are discounted off the full price, but may not be the lowest fares available.
If possible, the exact time of death should be recorded. Loved ones may want to spend time with the deceased. Institutions where deceased persons lived will have procedures to follow regarding death.
Family members, hospice staff, and possibly others such as a spiritual advisor and a mortuary for funeral arrangements, should be notified.
Several certified copies of death certificates will be needed to collect insurance and other death benefits. These copies can be obtained from mortuaries, vital statistics offices, county health departments, and online at county and state Web sites. Wills, trusts, birth, marriage and divorce certificates should be available. Social security cards, veteran papers, an obituary, and other documentation will be needed.
Family members may want to notify newspapers about publishing death notices and obituaries announcing the time and place of funeral or memorial services.
Arrangements with an online memorial service, often affiliated with newspapers, can ensure that those who do not attend funeral or memorial services in person will have the opportunity to participate online.
Contact should be made with insurance companies, unions, fraternal organizations, government offices, banks, credit unions, credit card companies, and real estate agencies to change titles if necessary.
Employee benefits from all previous employers should be investigated.
Arrangements for child care and out-of-town guests must be considered.
In the midst of all this activity, family members and friends should also consider their own feelings about death and the person who has died. The occasion that they may have been expecting while the loved one was ill has finally come. A life has been lived.
Information above is from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.
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.
As a hospice volunteer in Detroit nursing homes, I had contact often with patients not assigned to me. My hospice patients were always my primary concern, but most of them shared rooms with up to three other patients. At mealtimes, my patient and I shared a table with six other residents. In the excerpt below, I am the only one at the dinner table without dementia. Due to limited staff, I knew I would have to supervise, encourage, and generally keep an eye on everybody at the table. A school principal, I was used to multi-task management and didn’t mind being table captain at all.
I continued talking to Naomi (my hospice patient) and assisting her while monitoring others at the table. I noticed that Petra had not touched anything. Petra was not a very independent eater, but I knew she was physically capable of feeding herself by any means necessary.
“Petra, your food is just sitting there getting cold. You have a whole tray of delicious things to eat. You should eat some and see how good it is. You’re a good eater. Eat your food.”
“Food? What food? I don’t have none.”
“The food on this tray is all for you, Petra. This is your food tray right in front of you. Watch me point to each item. You have coffee, juice, milk, mashed potatoes, fish, broccoli, bread, and fruit. That’s your name spelled P-e-t-r-a.”
“That’s not my name. My name is Petra. That’s somebody else’s name. That’s not my name. I know my name.”
“Well, that is still your food on the tray. You should eat before it gets cold. Go ahead and eat. Give it a try.”
“Eat? Eat what?”
“Your food, Petra, your fish, potatoes, and everything else.”
“Fish? What fish? I don’t have none. Do you see a fish here? I don’t see a fish. I don’t have none.”
From previous experience, I knew that Petra and I could go on roaming forever around this same circle. Luckily, today she was sitting next to me. I gave her a taste of the fish because I knew she liked it. Then I placed her fork in her hand and started her off eating. I did this in steps by steering her hand and giving her directions on putting food into her mouth, chewing, and swallowing. Patients with dementia needed tasks broken into simple steps. Usually, she ate for a while by herself, even with her hands, once somebody started her off. Without any help, she sat and looked at the food she said was not there. My other hand continued to assist Naomi.
“Don’t do that! Leave my food alone! Get your nasty hands off my plate! Help! Can somebody help me?” screamed a patient at our table as if she were under attack. All the nurse aides were occupied feeding patients at other tables and experiencing their own mealtime problems. I was resigned to be the unofficial table captain now. I told Roscoe sternly to leave Charlena’s food alone. He gave me a confused look, pretended he didn’t know what I was talking about, but betrayed himself with a silly smirk he thought I didn’t see. I leaned across the table and directed his attention to his own plate by putting his spoon in his food. He picked up his spoon and started eating again. Then I reassured Charlena that everything was okay, and she could finish eating. Charlena smiled with an air of triumph. Roscoe was in trouble, and she relished knowing she helped to get him there.
Rita had been watching me help Naomi and Petra eat. Now, she was attempting to feed George, but with her own used utensils. George had his mouth open obligingly, anything to help the cause. I interceded before any damage was done. By this time, several patients had spilled food on the table or the floor and had food stains on their bibs. Petra had to be restarted twice to eat the food she insisted she’d never received. I had stood to lean across the table two more times to settle other table disputes involving food and different residents.
Naomi ate right along during all the interruptions. I had been giving her ongoing praise on how well she was doing. I also praised others at the table when they did well. They savored the attention, and Naomi wasn’t the least bit jealous. She had already told the others that I was her guest and even offered me food, which I declined. I hadn’t gone there to eat and couldn’t even think about eating if I had. When one resident was praised, another would often say, “Look at me. I’m eating, too.” This reminded me of students at my school who said the same thing when someone else was praised. I laughed, thinking the world was a universal classroom. Maybe the stars in the sky were created to be placed on billions of people’s foreheads when they did something praiseworthy.
My experience above is consistent with research findings on factors affecting independent eating among elderly patients with Alzheimer’s disease. Published in Geriatrics & Gerontology International, this Alzheimer's research study on independent eating is the first to generate objective data showing that difficulty in beginning a meal is a factor that hinders feeding independence by older adults with Alzheimer’s disease. The study also concludes that eliminating environmental interference factors and providing assistance promoting beginning a meal are necessary to assist older adults with Alzheimer’s disease.
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.
Many people wonder why hospice-palliative care volunteers serve patients who are terminally or chronically ill. Here are some answers researched by the Department of Psychology at Mount Allison University in Canada. Participants in the volunteer research included 41 hospice-palliative care volunteers from community and hospital-based programs. They were asked these questions with the following responses:
1)What aspects of your work provide you with the most (and least) satisfaction?
In five of the nine programs involved, volunteers said that feeling appreciated by the patients and families they support gave them great satisfaction.
Boundary issues and/or role ambiguities were mentioned among the least satisfying aspects of their work by volunteers in four programs. (Volunteer coordinators should note this as part of ongoing training.)
2)Why do you continue to volunteer?
Volunteers in all nine programs mentioned that they continue to volunteer because it makes a difference and meets a need in other people's lives.
3) Why would you stop doing this volunteer work?
Among the reasons given for potentially stopping volunteering were a family crisis, burnout, old age, and other commitments.
Many kinds of activities are available for hospice-palliative care volunteers. Among services needed in addition to direct patient care are opportunities in community education, fundraising, and office work. Potential volunteers should also consider using special talents or unique job skills that they already have. Haircuts @ Home is a volunteer program of San Diego Hospice and The Institute for Palliative Medicine. This video titled Haircuts @ Home: San Diego Hospice Volunteer Program features two volunteer hairdressers giving haircuts to hospice patients.
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.
If you are around terminally ill patients and their caregivers on a regular basis,
you may have noticed the following just as I have:
1)Patients miss personal contact with friends and family who may not be able to visit them regularly, particularly if patients live at new locations such as nursing homes. Some may not visit because of transportation issues or because they find the idea of visiting a hospice patient in person too depressing. I had a patient once whose mother refused to visit him due to the neighborhood where the nursing home was located.
2)Patients want to feel more empowered and in control of their lives. They want to be able to initiate interesting conversations about current events, recent stories about family and friends, and feel like they are making exciting contributions to conversations that welcome their input.
3)Caregivers experience the loneliness of not being able to socialize with family and friends freely the way they did before they became responsible for someone terminally ill. Some friends and family may have stopped inviting them out because they think caregivers will probably not be available. Some may feel awkward talking to caregivers in person about their problems.
4)Caregivers often feel stressed out spending so much time being caregivers, often with few outlets for outside communication. They can benefit from stimulation beyond their caregiving world and feel like life isn’t passing them by.
Research often validates what we already observe simply from living life.
When I ran across loneliness research comparing the loneliness experiences of the dying, their caregivers, and the general population, I began drawing my own conclusions based on my own observations. The Institute for the Study and Treatment of Psychosocial Stress in Toronto, Ontario, Canada performed research involving 37 dying cancer patients, 78 caregivers and 128 participants from the general population. All responded anonymously to a 30-item questionnaire describing their experience of loneliness.
Results indicated that dying patients and their caregivers had significantly higher scores than the general population did. These results are another wake-up call emphasizing the importance of supporting patients and caregivers. The average person can help patients and caregivers in several ways:
1)Offer to assist a patient and caregiver by temporarily relieving some of their burden physically or financially.
2)Share uplifting activities with them. Welcome their input in conversations.
3)Keep them informed about services that can help them. Aid them in getting the services.
4)Be a good listener and offer encouragement.
This video titled I Feel Socially Isolated: Caregiver Confessions with Leeza Gibbons gives more loneliness solutions that can benefit the patient-caregiver experience:
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.
Do you want to live to be in your nineties? How about living to be 100 and beyond in relatively good health for that age? More and more of the oldest adult Americans are doing just that. University of Southern California longevity researchers studying this extraordinary group of people have found several characteristics unique to the population of the oldest old:
1) They were more likely to live independently and had fewer diseases, better mental health, and better physical and cognitive function than those who did not survive to age 97.
2) They experienced health declines upon reaching 97 years of age, but between one-fifth and one-third of them remained disease free with no functional limitations or depressive symptoms, and one-fifth retained high cognitive function.
3) Oldest men were healthier than the oldest women, and whites were generally healthier than nonwhites. Oldest adults who were educated had better cognitive function than their less-educated counterparts.
Sure, we all know of and hear most about very old adults who reach maximum longevity in a state of poor health and functioning. But let us not forget about and encourage others to be more aware of the oldest of the old who remain healthy and high-functioning.
In this video titled Secrets to Living 100 Years, exceptionally old adults share their personal secrets to longevity:
Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homesis available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.
There’s a reason you feel compelled to enhance lives of the terminally ill. Cherish that inspiration. Move forward committed to an amazing and rewarding healthcare adventure.
2)Believe it’s all win-win.
Providing end-of-life service is a privilege, not a calling to be a savior. You and those you support come together in relationships of mutual healing and growth. Honor your win-win journey.
3)Be present.
By all means, show up. But be present with patients after you arrive. Evaluate appearances, behaviors, surroundings, and interactions with others. Listen with your heart. Even silence speaks. Really try to understand living from their perspectives. Focus on advocacy for improving their quality of life.
4)Try other doors.
Patients will have challenges such as dementia that may not respond to your usual front-door communication. Try other doors and even windows. Obstacles are enrichment opportunities in your partnerships with patients. Touch, music, pictures, stories, and fantasies are a few entry points. Let patients help you navigate your way into their world.
5)Know your piece in the puzzle.
Adherence to rules of protocol and professional ethics should be routine. Be aware of boundaries such as confidentiality regarding yourself, your patients, and their loved ones. Follow guidelines of your hospice organization, and seek help when needed.
6)Untie your knots.
There may be times of doubt, confusion, sadness, and guilt. These are normal knots of the caregiving process. Untie them by seeking support for your total well-being. Maintain proper rest, nutrition, exercise, and balance in your life. Do your best. Don’t be surprised when you discover reasons to kiss yourself.
7)Spread the word.
Be knowledgeable about hospice and palliative care. Share information so others can benefit from these specialized areas of healthcare. Encourage involvement in hospice and palliative care career and service activities.
8)Pick up a turtle.
If you see a turtle sitting on a fence post, you know somebody helped to put it there. Be on the lookout for turtles aiming for fence posts. Be a role model for other volunteers. Participate in organizations, conferences, workshops, and discussion groups where you can share best practices while learning new ideas.
9) Write death sentences.
Death will come no matter how often you avoid it or wrestle it to the ground. Have your advance directives, finances, and property in legal order. Urge others to do the same. Don’t burden loved ones later with important decisions you can record now. As you unfasten yourself from this life, be satisfied knowing your death sentences will be carried out according to your wishes.
10) Expect rainbow smiles.
Rainbow smiles hug you so tightly you can feel ribs of joy press against your essence. Hospice volunteering provides ongoing moments for you to positively impact lives. When you make those connections happen, rainbow smiles will come.
