Helping Older Adults Accept Caregiving Support at Home
Helping Older Adults Accept Caregiving Support at Home

Researchers identify four key reasons for reluctance and provide families with strategies to overcome them A recent AARP survey found that 76 percent of adults 50 and older want to live in their home as long as possible. Yet as their physical, functional or cognitive needs mount, some are reluctant to accept the help they need, which can compromise their safety and eventually jeopardize their ability to stay in their home. “In my clinic I frequently see patients where I know they need help at home, they’re really struggling, but they don’t want to have help,” says Lee Lindquist, M.D., chief of geriatrics at Northwestern Medicine in Chicago. “There’s a switch that goes off when people reach their 70s or 80s where they don’t want people coming over to help.” After seeing this pattern again and again, Lindquist began to wonder, Why do older adults resist accepting the help they need? and What can be done to overcome this resistance? To find out, she and her colleagues held a series of eight focus groups with adults age 65 and older living in and around Chicago and Fort Wayne, Ind. During the meetings the participants discussed their concerns about remaining in their home as they age and their reasons for being reluctant to accept help there. As the participants discussed their concerns the researchers identified four common themes and then encouraged everyone to brainstorm effective strategies for overcoming their reluctance. The findings were published in the August 2018 issue of the Journal of the American Geriatrics Society. For more on caregiving, visit AARP's Care Guides. Here are the primary reasons older adults don’t want to accept assistance, along with their suggestions for ways that family members and caregivers can help older adults look at the situation differently and overcome their reluctance. Reason for reluctance: Fear of losing independence If they become unable to complete basic tasks at home, many older adults in the focus groups said they wouldn’t want to ask for help because they worry that it could lead to a further loss of independence. “They feared it would be a slippery slope and they’d end up being sent to a nursing home,” Lindquist explains. In a separate study involving 8,881 adults age 65 and older, researchers in Australia found that the fear of losing one’s independence was second only to the fear of losing one’s physical health, both of which were underscored by a fear of being admitted to a nursing home. Strategy for overcoming it Reframe the concept of independence to reflect “that everyone is dependent on each other in some way,” Lindquist says. From the time we’re born until the time we die, most people depend on others to some extent. It’s a matter of relative independence and autonomy, in other words. Reason for reluctance: Not wanting to be a burden on others Focus group participants feared that asking for help would burden their loved ones who already have plenty to do; some even felt it would be degrading to have to ask. It’s a common refrain: In a previous study, researchers from the University of Pennsylvania found that older adults often express concerns about not wanting to burden their adult children and complicate their busy lives. Strategy for overcoming it Acknowledge that letting other people help you gives them satisfaction and joy, so you’re essentially contributing to their well-being. That alone makes it easier to accept help. But when you need to ask for it, “the challenge is to get past that first time,” Lindquist notes. “It’s like dating. Once you get past that first time, it’s easier.” Reason for reluctance: Lack of trust Some people were concerned that by accepting home-based care, they could be taken advantage of or exploited by their helpers. Others worried that they wouldn’t know whom to trust and that that would make them vulnerable. Strategy for overcoming it Think of yourself as in the driver’s seat because you can interview multiple people, ask for recommendations and check references. Once you start working with a helper and it goes well, the trust issue becomes easier to manage, Lindquist says. Reason for reluctance: Not wanting to lose control This fear stemmed from participants’ belief that asking others to help with or take over a task (such as grocery shopping) that they had done previously meant relinquishing control of the situation or that area of their lives. Strategy for overcoming it Remind yourself that “you’re the one in control because you’re doing the asking and you can name the time and place,” Lindquist advises. Also, remember that “if you’re open to help, you’re more likely to stay in your home longer.” After completing the focus groups, Lindquist and her team created an online tool called Plan Your Lifespan (www.planyourlifespan.org) to help older adults, their family members and caregivers better communicate and plan for possible home-based needs. “It was built for seniors by seniors, and it helps people plan for their 70s, 80s, and 90s — what we call the fourth quarter,” Lindquist says. “It’s about empowering older adults and helping them figure out what they want for the future. This way, they have a say before they get sick or injured or there’s an emergency. Ultimately, Lindquist adds, “Seniors need to realize that asking for help doesn’t mean I’m less independent. It just means I want to stay in my home longer.” Read more: https://www.aarp.org/caregiving/home-care/info-2018/overcoming-caregiving-concerns.html?intcmp=AE-CAR-CAH-BB-LL1

Learning to Serve the Dying
Learning to Serve the Dying

End-of-life doulas provide a new type of caregiving to patients and families Cheri Rigby always knew she wanted to work with the dying. As a registered nurse, she was exposed to death frequently, but she believed that more support was needed for those who were facing it. Through an unfortunate circumstance, she was given the opportunity to make a difference. “There was a tragedy — one of my very best friends,” Rigby recalls. “Her daughter was a special needs child. She choked on a Fruit Roll-Up and died. This was a little girl who was at my house all of the time; we spent a lot of time together. When Sophia died, I was sort of the closest person to that, because my friend didn’t have any immediate family. It was a life-changing experience for me. I saw that raw emotion firsthand with my friend, and quite honestly, instead of it scaring me away, it drew me in.” For Alua Arthur, it was meeting a stranger on a bus in Cuba, a young lady who was dying of cancer. Arthur says she engaged the woman in conversation about her inevitable death, and it sparked a fire that she says could not be contained. “I thought, Wow. We’re all going to do this at some point. Why aren’t we all talking about it now? Who are the people to support people through this? On that bus I got super clear this was going to be my work, yet I didn’t really know how.” “There’s a lot of medical support in dying, and there’s some emotional support, as well, but I find that death doulas do a great job of tying it all together." — Death Doula Alua Arthur Arthur and Rigby eventually found their way to becoming what is called an end-of-life, or death, doula – a professional who provides nonmedical caregiving services to people who are dying and to their families. Among the extensive services an end-of-life doula can provide are vigil sitting, vigil planning, respite care for family members, legacy projects to memorialize the life of the soon to be deceased, care coordination, and comfort to the dying person, through techniques such as massage and guided visualizations. Many end-of-life doulas, also known as death midwives, say they are there to complement the care provided by hospitals, senior-care facilities and hospices, as well as to fill in the gaps that occur during the dying process. “Although hospice is wonderful in the death and dying field, they don’t have the hours and hours and hours that the doulas have to really, deeply, get into this work,” says Janie Rakow, a practicing end-of-life doula for nine years and president of the International End of Life Doula Association (INELDA). “There’s a lot of medical support in dying, and there’s some emotional support, as well, but I find that death doulas do a great job of tying it all together and having knowledge about a vast array of subjects,” says Arthur, who has been a death doula for five years. End-of-life doulas bring their skills and expertise to various environments. “For the most part, I would envision that doulas would be practicing at someone’s home,” says Francesca Arnoldy, lead instructor in the University of Vermont End of Life Doula Professional Certificate program. “Caring for someone who would want to die at home, ideally with the support of hospice or palliative care, who then adds the doula in as an additional layer of support. But a doula can be hired to go into an assisted living facility or independent-living facility or even a respite house, hospice house – all of those are also options for doulas.” "[End-of-life doulas] figure out with the family where they are at, what do they need, what’s causing them to become overwhelmed, what kind of services are they looking for.” — Merilynne Rush, co-owner of the Lifespan Doula Association The Larner College of Medicine at the University of Vermont and partner Cabot Creamery Cooperative offer an eight-week online End-of-Life Doula Professional Certificate program. “Our program is comprehensive. On average, people probably spend about 80 to 100 hours on this work,” says Arnoldy. The first thing an end-of-life doula does is work with the client to determine the services needed. "They figure out with the family where they are at, what do they need, what’s causing them to become overwhelmed, what kind of services are they looking for,” explains Merilynne Rush, registered nurse, a practicing doula for 10 years and co-owner of the Lifespan Doula Association. “Different doulas offer different kinds of services.” “It’s being present enough to know what the patient and the family need — things like hand massage, foot massage, encouraging self-care for the family,” says Rigby, who recently completed the University of Vermont program. “It’s very much embracing the entire scenario. It’s not just about you and the dying person. You have to be able to read the situation well enough to fine-tune things.” Many end-of-life doulas find similarities between their role and that of the more commonly known role of a doula, aiding with childbirth. “Waiting for a baby to be born and waiting for a person to die are very similar in terms of the skill set required,” says Patty Brennan, an end-of-life doula with a background in birth and postpartum midwifery, and co-owner of the Lifespan Doula Association. Brennan says both circumstances require the ability to be fearless, patient and calm. There is no oversight credentialing body for end-of-life doulas, but there are programs such as those offered by INELDA, the University of Vermont and the Lifespan Doula Association that offer training and certification. Rakow, the INELDA president, says there was a demand for this type of doula service that led to the creation of her organization, which, along with training and certifying individuals, educates organizations such as hospitals, hospices and senior-care facilities to start their own programs. “People were hungry for it. We kept hearing from people, ‘How can I learn about this? Why doesn’t this exist anywhere else?’ “ “Waiting for a baby to be born and waiting for a person to die are very similar in terms of the skill set required.” — Patty Brennan, co-owner of the Lifespan Doula Association Some doulas have private practices, and others work in connection with hospices, hospitals and community organizations. “We try to forewarn people that if you’re planning to become a private-practice doula, it’s really going to take initiative,” says Arnoldy. “You’re going to have to develop your business and your role in the community and your reputation. You’re not going to look in the newspaper and find a job ad.” In addition to services provided, many are spreading the word and trying to teach the public more about death and the role of a doula. “Word of mouth has really been useful, but also creating opportunities for people to learn about the work,” says Arthur. “I think part of the reason why we’re not inundated with requests is that people don’t know that it exists. A big part of my work is in public education – letting people know that these services exist and that there are people to support them in their time of need.” And practitioners say the work is its own reward. “It's not depressing,” says Rigby. “It’s very powerfully motivating. It’s like a wake-up call that feeds your will to live fully. This is a common thread that folks who work with the dying understand.” Read more: https://www.aarp.org/caregiving/home-care/info-2018/end-of-life-doulas.html?intcmp=AE-CAR-CAH-BB-LL4

Looking At Your Own Mortality
Looking At Your Own Mortality

Dealing with your own mortality can be a challenging prospect, but approaching death doesn’t have to be an unpleasant or deeply distressing experience. With the right support and care, this sacred journey can be calm, peaceful and tranquil. Although death is the only certainty in life, it can be a subject that people shy away from. Even following a decline in health, you may find that even your closest family and friends find it difficult to acknowledge what’s happening. Whilst making plans and remaining in control of your experience can be empowering and reassuring, this can be complicated if those around you feel unable to provide the practical or emotional support you may need. Working with an end-of-life doula ensures you have continued access to care, support, and reassurance during your final days or hours. With prior planning, you and your end-of-life doula can make appropriate arrangements for your passing, including where you want to be in your final hours, how you would like the environment to look, feel or smell and whether you would like anybody else to be present. What does an end-of-life doula do? An end-of-life doula supports you through the sacred journey of death. As well as being with you during your final hours or days, a doula can also provide support in the weeks and months prior to end-of-life care. Whether you want to spend this time in quiet contemplation or doing as much as you can, an end-of-life doula can help you to prepare, emotionally and practically. End-of-life doulas are committed to empowering people throughout their journey, whatever stage they’re at. If you’ve been recently diagnosed with a terminal illness, for example, you may want to discuss the dying process with an experienced professional who can provide all the information and support you need. Additionally, you may wish to work with a doula to create appropriate remembrances for your family, friends and loved ones. Importantly, an end-of-life doula will also be with you during your final days or hours, providing compassionate and professional support throughout. Whilst an end-of-life doula provides comfort and reassurance to their client, they can also be an invaluable support for your family and friends too. When is the right time to contact an end-of-life doula? Your journey should be as unique as you are, so there are no set times at which you should contact a doula. In fact, you should feel able to get in touch with an end-of-life doula at whatever point feels right for you. Whether you want to talk with someone in the days, weeks or months leading up to your death, create lasting remembrances or plan your death, an end-of-life doula can provide the emotional reassurance and practical help you may need. As death approaches, you may wish to have your end-of-life doula with you, to ensure your transition is peaceful and in-keeping with any prior arrangements you may have made. Committed to providing exceptional levels of support, reassurance, and comfort, an end-of-life doula can help you to approach the issue of your own mortality with clarity and calmness.

We at You Are Not Alone Elder Care believe everyone matters and are worthy of validation
We at You Are Not Alone Elder Care believe everyone matters and are worthy of validation

We at You Are Not Alone Elder Care believe everyone matters and are worthy of validation. We assess and provide input to ensure quality of life up until the last breath. We affirm everyone is a culmination of their life experiences and not just the place in which they find themselves. We minimize the stressors of the senior years. We are here for you.

YANAEC  provides a service.  We are not a location nor a placement
YANAEC provides a service. We are not a location nor a placement

YANAEC provides a service. We are not a location nor a placement. We go wherever our clients are; nursing home, assisted living, hospital, home, children’s home, etc.. We help families who have a hard time facing death by facilitating important conversations and providing support and education.

Dame Cicely Saunders
Dame Cicely Saunders

“You matter because you are you, and you matter to the last moment of your life. We will do all we can, not only to help you die peacefully, but also live until you die.” Dame Cicely Saunders

Unknown
Unknown

“Sometimes in life we just need someone who will be there for us. Someone who will listen. Someone who will understand us.” Unknown

A good death is recognition that a person is still living until the last breath....living your best life
A good death is recognition that a person is still living until the last breath....living your best life

Death is still a taboo subject in our society - or if not "taboo" something that we don't want to talk about. Most people, therefore, don't have a healthy concept of what it's like to die before it happens, or what constitutes a "good death." Ask any death doula what a good death means, and they'll tell you that it is a recognition that a person is still alive until they take their last breath. An individual might have a terminal illness, they may have no prospect of recovery, and they may have accepted the inevitable, but they're still a person with feelings and emotions. Death is not an easy thing to face. Most people go through their lives with the expectation that their experience will continue the next day. A person at the end of life doesn't have this security: each day might be their last. The process can be especially tricky for people who are used to planning and thinking about the future. It's hard to continue a compelling life narrative when the horizon for one's own life is so short. Death doulas don't operate like medical professionals: their focus is not exclusively on the physical wellbeing of the patient. Doulas instead focus on helping the emotional, psychological and spiritual development of the person in need, making sure that they continue to live their best life. The tragedy of the end of life is that it can bring a person's life to a screeching halt, even before they have died. A terminally-ill individual might not see the point of making plans, going on vacation, or pursuing their hobbies. The prospect of death can destroy a person's quality of life, even if their actual condition doesn't prevent them from doing anything that they want to do. Death doulas, therefore, can be thought of as a kind of support that attempts to prevent this kind of fatalism. The job of a death doula is to provide a good death, helping a person approach the end of life as an opportunity to do the things that they've always wanted to do. Life isn't over until it's over. But when prospects are bleak, it can feel like it. Families, in particular, can get into a thinking rut, mulling over the negative aspects of a person's illness, without considering what needs to be done with the time left. It doesn't help that there isn't a clear definition in the medical literature of what constitutes a "good death." The best description we have so far is a death that is free from avoidable suffering for the patients and their family. But a good death isn't just about the avoidance of pain but also the acceptance of it, and a willingness to continue living despite it, right until the end. End of life doulas help people live their best life possible, despite the circumstances. They offer emotional, spiritual and physical support in the final days.

About You Are Not Alone

About Adrian Allotey, Owner, Certified End-of-Life Doula I am currently living my best life by responding to a calling on my life; service to elders and their loved ones. My life’s calling came as a result of being present in my 106 year old, loving grandmother’s journey until her last breath. Although I loved her dearly, I often felt troubled that I couldn’t be there for her like I wanted. Life got in the way; being a wife and mother and having a successful career. She was pretty healthy, but she lacked companionship. I knew there were things that could improve the quality of her life such as long talks, sharing stories, cooked meals, and transportation to the doctors, stores and church. I did my best, but there simply wasn’t enough time in the day to show up like I felt she deserved. Her passing gave my life’s purpose clear; service to elders and their loved ones. I made it my life’s mission to promote the final years as a sacred, beautiful, honorable stage of life. I became a hospice volunteer and a certified end-of-life doula, a person who assists in the dying process, much like a birth doula does with the birthing process. Working with elderly patients has been life affirming so much so that I left a career of 20+ years. Along with my team, we serve as non-medical elderly companions who specialize in physical, emotional and spiritual care. We meet our clients on their terms, see them as whole, and build relationships with them and their loved ones. Our self-care regimen, personal growth and intuition allow us to mindfully hold space and provide comfort for elderly people and their family in a non-judgmental, loving manner. Our motto “heart to heart" is evident in the holistic elder companionship we provide. Holding this space decreases the stress and fears family members face when looking for care for their loved ones; whether they are in need of respite relief, work long hours or live long distance. We can help. Through extensive end-of-life doula training, we are able to provide support, education, and suggestions for comfort. We have a toolkit of available resources to ease the anxious person and their family members including virtual “elder cams,” essential oils, crystals, reiki, mindfulness practices, etc. We are often referred to as “angels”, “Godsends”, “extraordinary”, “beyond belief” and words of the like. Contact us TODAY to see how we can be of assistance to you TOMORROW and we promise to assist in enhancing the life of your loved elder. MEMBERSHIPS National End-of-Life Doula Alliance Doulagivers National Hospice and Palliative Care Organization End of Life Practitioners Collective National Home Funeral Alliance CERTIFICATIONS Doulagivers End of Life Doula Practitioners Training Reiki Level 2 VOLUNTEER EXPERIENCE Ascend Hospice Reiki Practitioner and End of Life Doula Haven Hospice Reiki Practitioner


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