There is a note of humble awe in her voice as Kelly Fehr, the owner of Amada Senior Care of Nashville, recalls the final hours in hospice care that caregiver Jill Murray spent with their longtime senior client, Margie.
“On the day of her death as Margie was unresponsive and being cared for at home with hospice, I watched as Jill spoke with a gentle voice, moistening her lips and brushing her hair,” Kelly said. “We sang songs, said prayers and told Margie how much we loved her. She passed later that night. We cried together, a lot.”
When families undergo the end of a senior loved one’s life, hospice is where they usually do it with the help of caregivers like Jill. In our culture, we tend to fear death. Our fear can transfer to the people who are in the process of dying. Hospice, or the homes where terminally ill seniors go to live the rest of their lives, can be a breeding ground for this infectious fear unless we avert it and cultivate comfort, as Jill did for Margie.
Families who are present for an end-of-life situation experience conflicted feelings that do not foster the best environment for their loved one to pass away in. This blog will offer families tools for coping with the hospice process. These strategies taken from best practices can help you keep a peace of mind until the very end. November being National Home Care & Hospice Month promotes awareness that information and resources from agencies like Amada Senior Care are available.
Amada Senior Care reiterates the importance of planning for aging matters such as long-term care, estate planning and ending of life not only because it is good to plan ahead, but also because serious problems can arise if planning is never done. Near the end of a senior’s life, important decisions about their dying process must be made and communicated before they become too incapacitated to handle things themselves. A dying senior will often need others to advocate for them as they pass away. Trusted advisors, who will most likely be family, must know what orders to give health professionals who treat their elders, where and how their senior loved one wants to die, and when to assert their authority to prevent harm. Having serious conversations with your elderly loved ones about these decisions is the best way to plan ahead.
A Family Ordeal
Initially, you might think that hospice is all about the treatment of a patient or senior. The senior’s care is definitely at the forefront of all matters in hospice care, but what eludes some relatives and care providers is the importance of the family around them.
“How very awful it must be to be doing this frightening thing,” said Kerry Egan, a hospice chaplain, to Next Avenue. “Not everybody is frightened, but some are—and really want friends and family to be with them. You’re lonely and you don’t feel good and you’re sick and you want the people you love to be with you, but they’re afraid of you.”
The fear and despair level of a family around the dying can be toxic and disturbing in what should be a peaceful event. Families tend to fear both losing their senior loved one and being in the presence of them. The greatest tool in preventing the harm that fear can cause in an end-of-life family ordeal is remembering that everyone, living or dying, is a normal person in a difficult situation. Seeing as the dying tend to have family – above all other matters – on their mind as they pass, family unification is important, too.
The ending of life and end-of-life planning can be uncomfortable and challenging to talk about – which is why preparing for the end of one’s life often is an avoided task. However, not being prepared for a situation in which you are unable to make medical decisions for yourself can be disadvantageous to you as a patient and to your family. This is why Dr. Michael Demoratz, co-author of Dying 101: A Candid Conversation on Terminal Illness,” focuses on educating families about the importance of Advance Care Planning.
“If you deal with some of these issues before they become a crisis, they’re easier to handle,” said Dr. Demoratz, a nationally recognized expert on hospice and palliative care and National Clinical Director for Amada Senior Care.
Finding the Right Care
After Margie’s passing, Jill helped select her burial outfit and coordinate funeral arrangements. She even cleaned out the refrigerator, knowing that the family wouldn’t have time to see to it before items began to spoil.
The family requested Jill apply Margie’s makeup for the funeral because she knew how to make Margie look her best. Jill took time to consider the request before respectfully declining. The task would have been too emotionally draining for her, given she also was mourning Margie’s death.
On the eve of the funeral, knowing that Margie’s only granddaughter needed to stay at the house, Jill changed all the bedding and even baked muffins for the family. During the service, Jill held the great grandchildren on her hip and sang to them during her client’s funeral.
Indeed, Jill exemplifies the ideal care provider who you would want to help in your senior loved one’s end-of-life process. Finding the right care for this difficult job can be done with caregivers like Jill and experienced agencies like Amada Senior Care. Doing so takes time and informed decision-making by the senior’s family.
The actions of caregiver Justin Delgado, who is employed by Christina Ram as the owner of Amada Senior Care of Tucson, typify how having a trained and compassionate caregiver can bring comfort to a senior loved one. While their senior client Deryk was in hospice at his assisted living community, Justin learned that the med tech could not administer medications until those orders were received via computer. Justin realized that if he did not intervene, Deryk would continue to suffer unnecessarily in an uncomfortable and agitated state.
“Justin made sure the hospice nurse was notified immediately to rectify this situation,” Christina said. “He did this with diplomacy—working with all parties to ultimately provide the much-needed relief to Deryk while understanding the need to preserve relationships with the assisted living community and the hospice staff.”
Based on Jill’s and Justin’s experiences (as well as many others from their fellow Amada caregivers), it’s clear that a caregiver who offers guiding support will be least abrasive to your sensitive situation during a senior loved one’s passing. Find a caregiver who will show tact, grace and respect to your elder just as much as she or he does to your family.
Learning to Live While Dying
“This condition is humanity at its most raw, its most vulnerable. it is frightening, but viewed in a different way, it is incredibly beautiful. What is left is the essence of self. The inside is the outside. And don’t worry. You’ll wear it well.”
These words about dying are written by Bruce H. Kramer, a former college dean who struggled through a losing battle with ALS, or Lou Gehrig’s disease. He said to Minnesota Public Radio, “I found that by embracing it, it actually has become, in many ways, a friend. when you embrace your death, it just opens up vistas for you. Things mean much more to you because you know they’re passing.”
Life while dying is either toned negatively in despair or positively with gratefulness and appreciation. This goes for both dying seniors and their families because both might experience regret for dying too soon or thankfulness for a full life. Living while dying may take parts of either outlook, but time will carry on nevertheless, and everyone is faced with the choice to make the most of it.
Learning to live while dying means grasping life for all that it is in the final moments. Families can do this by treasuring the company they keep with dying senior loved ones, sharing memories, healing old wounds and assuring the dying that everything will be okay when they pass on. Seniors at the end of their lives can still learn to live by reveling in the kindness others around them offer, sharing their personal selves with others and appreciating the care of providers who will be there every step of the way.
Holding on or Letting Go
With advanced healthcare technology, seniors’ lives are prolonged in good ways and bad ways. Yes, a longer life is appealing to all of us. But seniors who might have to undergo prolonged life in the dying process may have to do it under dire circumstances. Especially if seniors are too incapacitated to communicate their dying process preferences, families who want to hold on to their loved ones may order their increased treatment. This treatment might be invasive, inhumane and even deadly.
Families must have serious conversations about hospice treatment or palliative care with their elderly loved ones. They must also come to a consensus about the decisions they make. These decisions should be accurately communicated with healthcare providers who will be in charge of treatment during the dying process. With assured direction no matter what may happen as a senior loved one dies, families will be able to focus on their quality time with the senior instead of bickering over their treatment. Most importantly, knowing when to hold on or to let go can give seniors the most comfortable, peaceful passing possible.
A senior loved one passing away may have lived a life to contentment and may have no further wishes before they die. But asking your senior loved one if they do can mean the entire world to them. Discover the priorities of your elder as they near the end of their lives to see if you can make their wishes possible. They might request a final treat, like their favorite meal or a visit to the ocean. They might want to find a lost connection and make amends. They also might want to update their will. While you have the chance to communicate with a dying loved one, be accepting, realistic and willing to execute their final wishes.
You are not Alone
Both Jill Murray and Justin Delgado were highly praised in October at the annual Value Awards presented by Amada Senior Care to recognize six caregivers who embody its “6Cs of caregiving.” These include Compassion, Commitment, Communication, Competence, Confident Humbleness, and Congeniality, and they reflect Amada Senior Care’s caregiving philosophy and process. Amada franchise partners nominated members of their caregiver teams for consideration and a juried panel selected the six award recipients.
Jill and Justin deserved this recognition not only because they stood strong as rocks for multiple senior clients and their families in need, but because they exemplified the message Amada Senior Care wants to give you: you are not alone in your experience with hospice. Whether you are the patient nearing the end of your life or the family preparing for it, you can keep your peace of mind with the right help. To find the right caregiver for you in your family’s end-of-life process, find an Amada Senior Care location near you.
“End-of-Life Peace of Mind: Family Tools for Hospice,” written by Michelle Mendoza and updated by Michelle Flores, Amada Blog contributors.