What services and support will hospice provide for me after my loved one has died? What does the End of Life Doula provide for grief support?
What services and support will hospice provide for me after my loved one has died? What does the End of Life Doula provide for grief support?

Most hospice teams leave a case after the patient has died. Many times families are feeling this as another loss. Hospice does offer bereavement services for up to a year or 15 months in most states. This is usually initiated by a call from volunteer and the living family member is told about monthly support groups that they may attend. The original hospice team that worked with the family is not part of this service.

Can an End of Life Doula help make funeral arrangements for me?
Can an End of Life Doula help make funeral arrangements for me?

Yes. An End of Life Doula has a ”scope of practice” that includes everything from the time of a terminal diagnosis to helping patients and families as the illness progresses, to the vigil, time of death, understanding and honoring grief and finally recover of life after loss.

What is the difference between and hospice volunteer and an End of Life Doula?
What is the difference between and hospice volunteer and an End of Life Doula?

An End of Life Doula can do everything EXCEPT give a medication and do any form of medical treatment or wound care. There is no limit of number of hours to sit bedside. The hospice volunteer needs to follow Medicare regulations that prohibit any form of touching, moving, feeding, bathing, toileting etc. The hospice volunteer in most US states is limited to a maximum weekly bedside visit of 4 hours. The average volunteer visit is 1-2 hours a week. This does not provide the adjunct support that patients and families so desperately need at this stressful time.

Caregiving While Working
Caregiving While Working

Stretch your time and cover your bases Over 40 million Americans are taking care of a loved one 50 or older. Approximately six in ten of them are doing it while also trying to earn a living. If you’re among them, here’s help. Human Resources Ask your HR rep about company policies and programs to support caregivers. Many companies have a plan in place to help employees find community services, counseling, respite care, legal and financial assistance, and caregiver support groups. Others offer caregiving leave or flexible work arrangements. Some employers may not have a policy for employees who are also caregivers, but they may be open to the idea. AARP and Northeast Business Group on Health have developed a toolkit to help employers support their working caregivers. Share this toolkit with your employer to help them learn more. Employee assistance or your loved one’s insurance carrier might cover visits with a therapist specializing in caretaking or family issues. Sometimes one small thing can be a big help. Be prepared: Even within the same company, different managers may be more or less supportive. Talk to Your Manager If you work for a small company with no HR department, make an appointment with your boss. Be upfront about your caregiving responsibilities from the start. Most bosses value good employees and will work to keep them. Don’t go in with the idea that there is a single answer Present solutions that won’t cost the company money or time. Flextime and telecommuting are accepted practices in many offices. Employers may be more likely to agree if you suggest a trial period that could be continued if successful. Be ready to compromise. A flexible schedule might not be possible, but your company may be willing to change your schedule, let you work from home one day a week, or pay for respite care when you travel for work. If your supervisor lets you work from home, make sure you are always accessible by phone and email. Respond quickly. Attend meetings from home by conference call or Skype. If Skyping, find a quiet room where you won’t be interrupted, and dress as you would at the office. Check in regularly to make sure the arrangement is working for all sides. Family and Medical Leave Act (FMLA) Under the Family and Medical Leave Act, eligible workers are entitled to unpaid leave for up to 12 weeks per year without losing job security or health benefits, to care for a spouse, child or parent who has a serious health condition. Companies that employ fewer than 50 people are exempt from FMLA. To qualify, you must have worked for the company for at least 1,250 hours in the last 12 months. Check with your HR department to see if you qualify. The company is required by law to tell you your rights under FMLA and, if you qualify, offer you leave. Employers may not threaten you or make your work life difficult because you requested a leave. You may take the 12 weeks of leave all at once or in pieces — for example, three days twice a month when a parent is receiving chemotherapy. When your leave is up, you must return to work to protect your job. Under the Americans With Disabilities Act (ADA), employees taking time off to care for a disabled parent or spouse are entitled to the same treatment as coworkers who take time off to care for disabled children. The ADA also gives you protection if you lose your job or are harassed. Some states have laws similar, but not identical, to the federal FMLA. They may provide different benefits. If no law applies, your employer is not required to give you time off or make any accommodations. Look Close to Home Investigate and participate in your local caregiving community. An adult day care program is good for socialization and structure, and has activities designed to maintain or strengthen skills. It may help you to talk to others who are facing the same issues. You also may be able to find people with whom you can have a mutual backup agreement or share a part-time caregiver. Plan Appointments Minimize the time you take away from your job. Schedule your loved one’s doctor and therapy appointments early in the morning or at the end of the day. Don't Abuse Work Time If you have to check in with your loved one, make doctor appointments or do related research, do it during your lunch break. Stay Organized Manage your time efficiently. Set priorities. Tackle the most important items first. When you are stretched between two obligations, it’s easy to forget something. Keep focused by using two to-do lists — one for caregiving and one for work. Put obligations for both caregiving and work on a single calendar. Delegate at work and at home. Show Appreciation Assume your coworkers may be pitching in to assist with the workload when you’re not in the office. Thank them now, and — when you are able — volunteer to help colleagues who are facing similar situations. More For Working Caregivers Learn to control what you can TELL US: How do you keep strong for loved ones? Read more: https://www.aarp.org/caregiving/life-balance/info-2017/work-benefits-rights.html?intcmp=AE-CAR-CLB-R2-C1

Palliative Care Specialists Can Reduce Your Pain and Speed Healing
Palliative Care Specialists Can Reduce Your Pain and Speed Healing

The hospital health team you didn’t know you had David Griffiths couldn’t breathe. The 69-year-old cinematographer had been losing his voice for months. Then, one night last summer, he woke up gasping for breath. “It was frightening,” says Griffiths. “I walked around all night because I was afraid to go back to sleep.” The next day at Mount Sinai Hospital in Manhattan, an ENT (ear, nose and throat doctor) probed Griffiths’ throat and discovered a huge white tumor wrapped around his larynx — crushing his windpipe, his esophagus and his vocal cords. Doctors rushed Griffiths into surgery to place a breathing tube in his throat and, over the next few days, inserted a feeding tube in his stomach and a port in his shoulder for delivering medication. Griffiths would need five kinds of chemotherapy, plus radiation, to shrink the tumor and kill the cancer. He’d spend the next six months traveling to and from the hospital several times a week for outpatient treatment and IV rehydration. He was unable to work, or even ride the subway, because he couldn’t risk catching an infection. The unrelenting pain in his neck made it nearly impossible to sleep. But unlike most people who enter the hospital with a severe illness, Griffiths had a secret source of strength: the Mount Sinai palliative care team. Comprising a specially trained doctor, nurses and other practitioners, the team helped Griffiths deal with the pain, stress and logistics of his treatment. In addition to making sure he was on the right dosage of morphine, his palliative care team helped him get rides to and from the hospital, provided a nutritionist, helped coordinate his care with all of his other doctors and answered any questions he had in between visits. “They were fantastic,” Griffiths says. “They kept a close eye on me.” Griffiths’ experience may sound exceptional, but it needn’t be. Palliative care specialists are available at most major hospitals, and they can ease your pain, reduce your stress and perhaps even improve your chance of survival. Their services are typically covered by private insurance, Medicare or Medicaid. So why haven’t you heard of them? To get expert tips to help feel your best, get AARP’s monthly Health newsletter. Health care’s best-kept secret Most people hear the words “palliative care” and think “hospice,” but they are different types of care. Hospice is reserved for when curative treatments have been exhausted and patients have less than six months to live. Palliative care, on the other hand, is a team-based medical specialty focused on providing relief from the symptoms and stress of a serious illness — care that you can get at any age and at any stage of your illness. “Why should you have to be dying to have somebody focus on your quality of life?” asks Sean Morrison, M.D., director of the National Palliative Care Research Center. That’s a relatively new point of view in the American medical system and one of the biggest (and least talked about) changes in health care. Palliative care developed in the U.S. in the 1990s and only became a formal medical subspecialty in 2008. Today, three-quarters of U.S. hospitals with more than 50 beds have a palliative care program, according to the Center to Advance Palliative Care (CAPC). Ninety percent of hospitals with 300 beds or more offer it. And these specialists can have an enormous impact on the quality of your life and your outcomes. When adult patients with blood cancers saw palliative care clinicians at least twice a week during bone marrow transplant procedures, they experienced better symptom control during and after their hospitalization, according to a 2016 study in the medical journal JAMA. A 2010 New England Journal of Medicine study showed that lung cancer patients receiving early palliative care had less depression and better quality of life — and lived nearly three months longer. In fact, the American Society of Clinical Oncology now recommends that all patients diagnosed with advanced cancer receive palliative care within two months of their diagnosis. “People who get palliative care feel better; avoid preventable 911 calls, ER visits and hospitalizations; and stay independent and in better control at home,” says CAPC director Diane Meier, professor of geriatrics and palliative medicine at Mount Sinai. “They have someone who can help if a crisis arises in the middle of the night.” Morrison says a palliative care provider acts like “a quarterback,” working closely with the other team members — which may include a nurse, a chaplain and a social worker—as well as the patient’s other doctors. Communication is critical because one of the major issues people living with serious illness face is the fragmentation of our health care system. “People don’t talk to each other — a particular specialist is only interested in his or her particular organ system,” Morrison says. “My role is to make communication easier by coordinating care.” “Let your specialist focus on treating your disease, prolonging your life, ideally curing you,” says Meier. “Let your palliative care team focus on everything else.” How to get the care you need Approximately 6 million people in the United States have a need for palliative care, according to the CAPC. But most patients don’t know about their options. “The grave majority who could benefit from care are not getting it,” says Meier. One reason is workforce shortages. “There just isn’t enough staff to address the widespread suffering of seriously ill people in hospitals,” she says, “not to mention the much larger numbers of similar people who are not hospitalized.” Another major impediment is a pervasive misunderstanding among doctors of what palliative care is. “Physicians are a major barrier to access,” Meier says. “They often don’t refer, and when patients ask them about it, they say, ‘Oh, you don’t need that. You’re not dying.’ ” If you feel that a palliative care specialist could help with managing your pain and stress, you’ll probably need to ask for it. Morrison recommends you start by saying, “I know I’m not dying, but I’d like the added layer of support that palliative care can provide. Can you refer me to a palliative care specialist?” If your doctor isn’t helpful, use the Find a Provider tool at getpalliativecare.org to search for a specialist in your area. You can look for care that is provided at a hospital, a nursing home or a doctor’s office, or even at home. You may need to be your own advocate and push to get the palliative care that you need or ask your health care proxy or another loved one to help you get it. Four things to tell your doctor What “quality of life” means to you. For some, it may mean maximizing time with loved ones. Others may prioritize relief from pain and other symptoms. Or it may mean remaining independent and making your own decisions for care and where you want to be treated (home versus hospital). Your religious, cultural or personal beliefs. Share anything that might be important to consider in your care and treatment decisions. Which treatments you may or may not want. Remember, you have the right to refuse any treatment you don’t want. Whether you have a living will or health care proxy. Give your doctor a copy. (If you don’t have these yet, consider setting them up.) Read more: https://www.aarp.org/health/conditions-treatments/info-2018/palliative-care-hospital-health-team.html

In-Home Care Services
In-Home Care Services

Identifying the Best In-Home Care Options for You If your goal is to allow your loved one to continue to live independently at home —in-home care might be the best solution for your loved one and you. There are flexible options that provide care for a few hours, a few days or live-in. The following steps can help you choose the right care arrangement for your situation. Step 1: Determine what you need help with Step 2: Figure out how often you need help Step 3: Assess your budget Step 4: Determine your loved one’s comfort level Step 5: Start evaluating specific companies/caregivers Read more: https://www.aarp.org/caregiving/home-care/in-home-care-services/

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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