We are born, we experience, and then we die. That is how the “game” of life works. If it is a guarantee of life that living will at some point end, why do we have such a challenge coming to terms with a terminal diagnosis?
Yes, medical advances have been amazing in curing and healing, BUT death will still come at some point.
There are two ways to die. Fast is one way, where you have a heart attack or a stroke or you’re hit by a truck. The body is alive one minute and dead the next. There is no process here. It is immediate. There are no signs, no warnings. A person is literally alive one minute and dead (for whatever reason) the next.
In these difficult economic times, families caring for a loved one with a life-limiting illness often face heartbreaking choices. When the primary wage earner becomes ill—or when a caregiver must stop working to provide care—basic needs like food, utilities, and medications can become overwhelming burdens. No family should have to choose between keeping the lights on and caring for someone they love.
We health workers feel we have to do something. We have to take blood pressure, pulse, temperature, check peeing and pooping, and do assessments.
With approaching death, it isn’t so much doing something as it is just being there.
Emotional support, guidance for caregivers, and listening are our best tools. Addressing humanity is end of life work.
End of life work takes the focus off the disease and increases the attention on the humanity of a person. It focuses on the person that has a disease instead of the disease that the person has. I’m not saying you shouldn’t focus on the disease and its treatments. I’m saying focus on the human being that has a disease, and only THEN look at the malady.
Denial by the person with a life threating illness, denial by the caregiver, and I’ll even add denial by some attending physicians. Denial is often the reaction to diseases that have reached the point of not being fixable.
It can’t be me. It can’t be my special person. The doctors are wrong. If we do everything the physician recommends, we’ll be fine. If we do all the “right things” (eating, exercising, not smoking, not drinking alcohol, praying) everything will be okay. AND if the doctors are right in saying the disease isn’t fixable, then there will be a miracle and death will not come. Other people die, not me or even anyone close to me.
Veterans and their spouses are invited to join us on November 11th from 12pm – 2pm for a delicious complimentary lunch at Belle Reve provided by Quinlan Care Concepts/Karen Ann Quinlan Hospice. Each Veteran will also receive a commemorative certificate and pin.
Hospice takes care of people the doctors are having a difficult time fixing; people the doctors probably can’t fix. What does hospice do? Hospice helps people live with the greatest possible comfort during the limited time they have left.
It is interesting that a person who can’t be fixed, who is approaching death through disease, looks very sick and often frail in the months before their death BUT they don’t look like they are dying or at least match our idea of what a person looks like. They have probably entered the dying process in those prior months but they don’t look like they are going to die. It is only in the one to three weeks before death, that a person who is dying from a disease actually looks like they are dying.
People are generally referred to hospice in the last weeks of their life, which is way too late to help the patient and is often just crisis solving with the family.
In a recent story titled “Saying Goodbye at the Bedside,” by Barbara Karnes, RN, Award Winning End-of-Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner, and International Humanitarian Woman of the Year for 2018 & 2015, she talks about what you can do when you are with your loved one at the end-of-life. It’s an inspirational read which addresses topics you may be thinking and doing and gives you ideas of what you can do in those final, sacred moments with your loved one. Read the full story by Karnes here: https://bit.ly/41yjrWa
Barbara’s blog, “Something to Think About: A blog on the end of life,” which has a collection of valuable stories and end-of-life education materials for families and professionals, can be found here: https://bit.ly/3J2PW8N
In a recent story published by AARP, research shows the number of family caregivers has jumped to 63 million Americans, representing a 45 percent increase, or nearly 20 million more caregivers, over the past decade, according to a joint report by AARP and the National Alliance for Caregiving (NAC). This means roughly 1 in 4 American adults are caregivers, with 59 million caring for adults and 4 million for children under 18 with an illness or disability.
The new report, Caregiving in the US 2025, is a near 30-year research series that provides a comprehensive look at the state of caregiving in America, revealing how caregivers are taking on more complex responsibilities, often at the expense of their own health and financial security. Today’s family caregivers are younger, more diverse and more likely to be juggling multiple roles, with nearly a third caring for both children and adults.
Many of us know someone who is a caregiver or you may be a caregiver yourself. Many caregivers feel alone, helpless, confused, unprepared, tired and unable to provide for the needs of their family member or friend. Many caregivers put the loved one that they are caring for first all the time, which puts strain on their own mental and physical health. Often, people caring for another need help and do not know how or who to ask.
There are many ways to help support a caregiver…
Ask the caregiver how they are doing:
Acknowledge what they are going through and let them know you respect their privacy, but care about them and want to offer support and a listening ear. Caregivers tend to experience “caregiver’s guilt,” which is a feeling that they think they aren’t doing enough. Give them strength by reassuring them that they are doing everything possible for the person they are caring for.
Spend time with the person who is sick or injured:
Family caregivers are often the only link the care receiver has with the outside world. Offering to spend time with the person can be a gift to both the care receiver and caregiver. Bring a book or newspaper to read aloud, a game to play, a craft to do together, photos to share, a good movie to watch, or just a friendly ear for a conversation. And plan to stay a while, it will be appreciated more then you know.
Offer specific help:
Don’t say “call me if you need me,” it is too vague and may not appear to be a sincere offer to help. Often caregivers do not want to be a bother or may not feel they have the time to make a call, as it is one more thing for them to do. Be specific: tell the caregiver you are going grocery shopping and ask them what can you pick up for them, offer to make a phone call for them, cook a meal for the caregiver and care receiver a day or two each week (pick the days and stick to it, that’s one less thing the caregiver has to worry about those days), sit with the person who is ill, do research to find local and legitimate resources that would be helpful for the caregiver given their situation, take care of the person who is ill overnight, if you are able to do so, giving the caregiver a much needed overnight break or go with the caregiver to appointments and help the caregiver get the care receiver into and out of the appointment. You never realize how helpful a second set of hands is when you are taking someone who is dependent on you out of their home to appointments.
By offering to do something specific, you are communicating that you are really willing to help the caregiver. If you call the caregiver and they don’t answer, text them. Sometimes caregivers feel so burned out they don’t want to answer the phone or can’t answer the phone and texting is a quick way for them to respond back to you when they have a moment. They will be thankful you reached out and want to help in whatever way you can.
According to the National Alliance for Care at Home, a survey of 400 family caregivers ages 22 to 44 found that many millennial and Gen Z unpaid caregivers in the United States need more support from home care and hospice providers. The most common and urgent needs of the caregivers, according to the report from Transcend Strategy Group, included education in elder care and support and expertise in end of life care and decision making.
Evidence of the burden on these younger caregivers is demonstrated in these responses:
-90 percent said caregiving is emotionally and mentally taxing; -84 percent said caregiving is a significant financial burden; -70 percent are unsure they’re providing quality care to the person they’re caring for.
Getting more information matters to these caregivers, but so does how they receive that information. One-on-one conversations between caregivers and clinicians are the most preferred way for home care providers to guide unpaid caregivers, according to the survey, but education and support can also be provided via videos, written materials and social media.
“Respondents generally prefer to have a conversation with a medical professional when receiving healthcare information,” reads the report. “However, those aged 22 to 32 were more likely to prefer social media videos provided by content creators compared to those 33 to 42.”
A particular area of need for these younger caregivers is end of life care, beginning with education. One third of caregivers in the survey believe hospice care increases the likelihood of death for the patient or makes death occur more quickly. Fixing those misconceptions would begin to improve end of life care for these patients.
Caregivers, of all ages, need to know that with hospice care comes an entire team of people to help them and educate them. In addition to our team of nurses, who are available 24 hours a day, hospice offers social workers and counselors to provide emotional and practical help. Chaplains offer spiritual support as requested. Certified home health aides help by providing patient physical care and hygiene and training the family caregivers on best methods as well. Trained volunteers offer assistant and companionship for the patient and family.
Caring for yourself as your loved one’s caregiver is one of the most important things you can do. Karen Ann Quinlan Hospice supports the family in conjunction with the patient. Hospice can arrange extra relief for caregivers who must work, travel or rest for a period of time. The special help includes extended hours of home health aide care or the temporary placement of the patient in a respite care facility.
How do you know if you or your caregivers could benefit from hospice care?
You or your caregivers are physically and/or emotionally exhausted from caring for you or your loved one.
Your family is feeling isolated because of caregiving demands or the uncertainties you feel about your loved one’s future.
You or members of your family appear to need emotional support to cope with the situation.
You are overwhelmed by the physical, financial, emotional and spiritual concerns arising because of the illness.
Hospice care enables the individual and their families to experience the final stage of life together, in the setting most comfortable for them. Each team member is focused on the person, not the illness, making sure that all physical, emotional and spiritual needs are met.
On Wednesday, June 5, at the Annual Home Care – Hospice Conference & Exhibition held in Atlantic City the Home Care and Hospice Association of New Jersey presented the Martha Esposito Award to Lee Ellison.
Ellison was recognized for outstanding contribution to the hospice industry through pioneering the End-of-Life Doula (EOLD) movement at Quinlan Care Concepts by establishing their Navigators program. In collaboration with International Doula Life Movement the organization has trained 31 End-of-Life Doulas to date. This groundbreaking initiative, led by Ellison, provides crucial emotional, spiritual, and physical support to patients and families before, during and after end-of-life transitions, focusing on advance directives, grief support, legacy projects, holistic comfort care practices and normalizing the conversation about death and dying.
“25 years ago Julia Quinlan received the Martha Esposito award for her work in the hospice industry. It’s such and honor to receive this award as we celebrate 45 years of serving the community – continuing her work with innovative and pioneering programs to help our families,” said Ellison.
“End-of-life doulas have been in existence since the beginning of time. Introducing them in home care and hospice is a natural progression. We can all work together to normalize the conversation about death and dying because a life well lived deserves a good death. We’re all going to die, but we don’t know when, where, or how. What we can do is prepare and that’s were our Quinlan Care Navigators and end-of-life doulas come in,” said Ellison.
Mary Pradilla was presented the Carol J. Kientz Member of the Year Award at the the Conference. The award was given to a member who has gone above and beyond the benchmark of involvement in and commitment to the Home Care & Hospice Association of NJ and it’s work to serve as a catalyst for excellence in home care and hospice in New Jersey.
For more information about the Quinlan Care Navigators program please visit: quinlancare.org. If you are interested in becoming an end-of-life doula, the next in-person class starts on August 23 and information can be found online at Quinlancare.org/Navigators or by calling 973-782-1255.
