What to Expect When the Older Adult You Care for is Dying

One of the most powerful ways a professional caregiver can support an older adult at the end of life is to stop doing and start listening.

For the professional caregiver, trained to help older adults with ongoing care needs, hygiene support, housekeeping, meal preparation, and other activities of daily living – the role of supporting a dying client can be a tough one.

Yet delivering care support to an older adult at the end of their life is also one of the most important things a caregiver can do. Often, end of life care means attending to the client’s psycho-social needs, rather than the task-oriented responsibilities like cooking, dressing, says Kim Mooney, a certified thanatologist, and owner of Practically Dying, an educational source for support and information on dying, death, and grief.

Mooney teaches HomeCare of the Rockies caregivers how to support older adults at the end of life, during the HomeCare 100 Caregiver Training Curriculum.

Led by HomeCare of the Rockies the HomeCare 100 provides 100 hours of classroom and practical training to professional caregivers on dozens of topics.

Caregivers learn about the aging process, approaches to dementia care, safe transfers and fall prevention, caregiver wellness, and what to expect and how to help an older adult in the dying process.

Learning how to deliver quality care even at the end is something that professional caregivers should talk about and prepare for, Mooney says.

“We all deal with death so differently,” says Sandi McCann, president of HomeCare of the Rockies, which provides in-home caregivers to older adults and families living in Boulder, Longmont, Louisville, Lafayette, Broomfield, Loveland, and all surrounding areas. “Yet the loss of a loved one and our own mortality are things we all face. It’s important that we learn and talk about grief and dying so that professional care providers feel comfortable and capable of supporting older adults through their own transition.”

Your End of Life Attitudes

Our views on death and dying are shaped early on by how we are raised, our personal experiences, and attitudes, and beliefs. Many of us grew up in households where death was rarely discussed and there were strict rules about how to grieve, Mooney says.

Often people were told not to cry, and urged to “move on” and get over their grief and because their “loved one was in a better place.” Yet, these approaches are not helpful to older adults who are nearing the end of life, nor to those of us who go on living without them.

As a professional care provider, then, it’s important to consider your own beliefs and experiences with death and grief, so that you’ll be able to bring yourself and expertise consciously to the older adult you are caring for. When we understand why we respond to death and talk of dying as we do, we can be more responsive – rather than reactive — and provide the kind of care support the older adult needs, even when it’s different than what you want or believe.

“Often people who are dying want and need, most of all, is to be listened to,” Mooney says. “To be attended to and supported in a way where they feel that they can bring anything up. Your job as a professional caregiver is to support the older adult in the way that they need.”

In many cases, this means putting your own beliefs aside. For example, if you are a Christian who believes in Heaven or an afterlife and you are working with an older adult who is an atheist and finds no comfort in confession or prayer, don’t impose your beliefs and “ask to pray with him.”

Instead, provide comfort and care by being present and open to anything the older adult shares. The senior may be scared or angry. She may express her frustration.

Rather than changing the subject, or jumping in with answers and solutions, Mooney suggests caregivers use this simple phrase: “Tell me more about that,” to normalize the senior’s experience and make it safe for them to share whatever emotion they are experiencing.

“Don’t react and try to fix,” Mooney says. “Instead, help them to be comfortable with anything they are feeling. Many times, people just need to be listened to.”

For the professional care provider, that can mean sitting in silence. If you are talking longer than 60 seconds it is time to be quiet, Mooney says.

It’s also important to manage your emotions while at work. If you find yourself sitting and crying along with your dying client, then the older adult may feel bad, as though they must take care of you. This can limit their own experience and emotion.

If a client asks: “Why am I still here?” and you offer reasons such as how much their family loves them or needs them, this may cause them to feel more stress and greater responsibility to stick around to care for and protect their loved ones. Or, they may feel bad, as though they are letting the family down by not being able to be stronger and live longer. Yet, dying is a natural process, not a failure or weakness and it’s important to normalize the process and allow the senior to go through the transition in the way the supports and serves them.

As a professional caregiver, you can be instrumental in helping them do this. And the way you support their physical needs will probably change too.

What to Expect During the Dying Process

As the body changes during the dying process, you’ll notice several things happen.

Changes in appetite.
The senior may want to eat and drink a little, or not at all as the body begins to conserve energy.

How to help: Do not force the older adult to eat or drink. Instead, help them be comfortable. Ice chips, frozen Gatorade or juice might feel good in their mouth. A cool, moist washcloth placed on the forehead may be a physical comfort.

Altered sleep patterns. As death nears, the older adult may spend more and more time sleeping and might be uncommunicative or difficult to wake. This is due in part to the body’s changing metabolism.

How to help: During this time, you can sit with the older adult, hold their hand, speak quietly. Do not shake them awake or speak loudly. Also preserve dignity and professionalism by talking directly to the person as you would if he was awake and never talking about the older adult or his condition to others, while in the presence of the individual you are caring for.Hearing is the last sense to go, and it’s possible the person can hear you and be comforted or even hurt by the conversations taking place around them.

Vision-like experiences. Many older adults speak or claim to have spoken to people who have already died. They may also appear to respond to people or experience places and things not visible to you. For some people, these vision-like experiences are a natural way to prepare to transition from this life.

How to help: Don’t be afraid, these visions are normal and common. And, do not argue contradict, explain away, or deny what the older adult is sharing or experiencing. These visions are very real to them and a very natural part of the dying process. Simply affirm and support.

An increase in restlessness. The older adult you care for may begin tugging at the bedsheets or clothing or display other restless motion. This behavior can be a result of a decrease in oxygen in the brain and metabolism changes.

How to help: Do not interfere or try to restrain, but do try to calm by talking in a quiet and natural way. Reading to the older adult, playing soothing music, or gently massaging the senior’s forehead can help calm them.

Help from Hospice

As these symptoms and signs emerge, it is a good time to recommend that hospice become involved. If it isn’t already, make the suggestion to your care manager, who will then follow up with the family.

Some families will already have palliative care programs in place which helps the older adult manage pain and symptoms while they are undergoing medical treatments. Palliative care programs also coordinate care between providers to help monitor interactions between patient medications and keep the patient and family educated about the medical conditions.

Most families will also receive hospice care as their loved one nears the end of their life. Hospice care also supports seniors and their families by providing medical and non-medical care delivered by physicians, nurses, chaplains and others to people with and expected six months or less to live and is no longer seeking treatment. Hospice providers will also help families navigate the process after the senior has died.

At the End

When a client is a hospice patient at the time of their death, your role is to first contact the hospice provider. Do not say that the individual has died, but instead, tell the hospice provider that you believe the person has passed. Then remain in the home until hospice arrives.

After calling hospice, HomeCare of the Rockies caregivers are to call their Care Manager. If that individual is unavailable call the office or on-call scheduler. At that time, the HomeCare of the Rockies team will provide grief support to the caregiver and next-step instructions.

After death, some family members may choose to sit with the body and say goodbyes or conduct a small ceremony. Others may call the funeral home immediately – all of that is OK. Remember not to impose your beliefs or opinions, during this time.

While you may, understandably, be dealing with your own grief and fears, it’s important to maintain your own professional boundaries. Do not accept personal gifts, take on extra responsibilities, or share your personal business with the dying person or family.

While you may feel very close to the older adult who has died, you are a professional, not a family member and the family must ultimately go through this process in their own way. Maintaining your professional boundaries at this point is in fact, the best way to help the person and family you care for complete their process.

And, Mooney says, it’s OK too, if you are aware of the sadness and grief without feeling deeply affected by it. Respectfully allow others to grieve, without feeling as though you need to join them.

Death and dying is a natural part of living, yet it is complicated by our own personal views and experiences and influenced by the way we’ve been raised to think and talk about the process.

A professional caregiver who knows what to expect near the end can best support the older adult in a way that can help them find comfort, peace, and meaning in a life already lived.

Want to learn how to deliver care support to an older adult as they approach death and receive the support you need to manage your own grief? At HomeCare of the Rockies, we provide paid training to caregivers in the HomeCare 100 so they are capable and qualified to deal with any situation. And, we provide ongoing support to all our caregivers.

Apply Now. Jobs are available 720-204-6083.

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