Dying: Being in Control (Research, Hospice Story)

Are you ready to die? Because I have been a hospice volunteer many years, people sometimes assume that my patients and I talk about death a lot. We don't. But death-related discussions are important parts of advanced care planning and palliative care. Some people also assume my volunteer visits must be depressing because no one really wants to die. Wrong again. Some of my patients have stated they looked forward to death and gave reasons that had nothing to do with depression.

People have complex attitudes about death, dying, and ethical considerations. A Massive Open Online Course (MOOC) titled “Dying2Learn” provided an opportunity for researchers to explore societal and personal attitudes about wishes and beliefs regarding death and dying. Among research results highlighted were desires of patients to exercise choice and control in relation to dying. Some individuals wanted control while preferring not to know that they were dying. Others wanted to know as much as possible and still be more in control. Even after legal matters related to death were in order, some patients had concerns that others might not consider important, but the element of control still mattered.

All this talk about control reminds me of my hospice patient named Rose. Are you ready to die? Rose was. This is what she said to me about her upcoming death that clearly indicated her need for control:

She began by asking me, “How old did you tell me I was?”

I responded, “You’re ninety-nine, and you’ll be a hundred years old on your next birthday.”

“A hundred years old is too old. I don’t think I want to be that old.”

“There are three other ladies in this nursing home who are older than that. One is a hundred three. We talked to her last week during your wheelchair ride.”

“How much longer will it be before I make a hundred? I don’t know if I want to wait too much longer.”

“It’s only one more month. I remember you said you had spiritual talks with your minister. If you decide to wait, I’ll get you a big balloon that looks like a birthday cake.”

“I guess I could wait. Yes, I think I will wait. That way I can celebrate my hundredth birthday. When I do get to heaven, I can tell everybody I lived to be one hundred.”

And that’s exactly what she did because she felt she was in control.

(Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes)

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers. Visit Hospice and Nursing Homes Blog and Frances Shani Parker's Website.

Home Funeral (Video 4:17)

Participation in death-ritual arrangements at home was therapeutic years ago and can still provide supportive closure and comfort. After a death took place, the body of the deceased was prepared at home for viewing. Mourners came to pay their respects, console the family, and offer other forms of assistance. The family appreciated this outpouring of support from the community. After the funeral, the body was buried.

Returning to past traditions such as home funerals is another death ritual option that can be considered by families when a loved one dies. Saying final goodbyes may be more appropriate for them in a death ritual celebrated at home. Most states allow home funerals as long as legal documentation related to claiming the body and arrangements for burial or cremation are handled appropriately.

For those who feel the need for more assistance, a home funeral can be done with help from a funeral home providing a la carte services such as transporting the body to a cemetery. In addition to saving thousands of dollars, some families want to have more control over how the deceased is cared for after death. Many people view a personalized home funeral as an extension of hospice care they provided a loved one at home.

This video titled Home Funerals is an introduction to the dignified death ritual process creating an alternative for family and friends to unfasten their earthly connections with loved ones who die. Comments are especially welcome from those who have participated in home funerals.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers. 
Hospice and Nursing Homes Blog

End-of-Life Conversations Honor Future Wishes

The holidays provide wonderful opportunities for families and close friends to get together, reminisce, and have a joyful time. But what about happiness in the future? Eight out of ten people say it is “very” or “somewhat” important to write down end-of-life wishes, but only 36% actually have written instructions. Why not take advantage of holiday time together to engage in important end-of life conversations that can be crucial later in honoring wishes of those you love and yourself.

Engage With Grace  is a a movement aimed at promoting these kinds of conversations using the five questions below. They’re not easy questions, but they are important and shouldn’t be ignored. Sometimes we think we know what loved ones want, and we really don’t. Later in life, when several people are involved in making inevitable decisions about life threatening health matters, guessing, confusion, and hurt feelings can easily hinder progress. The key to preventing this negativity is having end-of-life conversations when they can be positive with personal input regarding what loved ones really want. Fortunately, many people actually enjoy discussing their answers with loved ones.

Are you aware that some chronically ill and dying Americans are receiving more care than they and their families actually want or benefit from? Add a new gift to your holidays by including thoughtful conversations that can improve quality of life. No one knows what the circumstances could be at future family gatherings during a healthcare crisis. You and your loved ones can benefit greatly from answering these questions and implementing the suggestions given by being proactive  when the time comes:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers in America and other countries and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Advice for Caregivers: Life, Death, Bereavement (Video 2:56)

Although many caregivers are actively involved in patient care for a considerable amount of time, they may not be confident or knowledgeable sometimes about the specifics of caring for someone else while maintaining their own quality of life. In addition, thoughts of preparing for a loved one’s death and their own future bereavement after the loved one dies often lurk in the background of their daily living. Healthcare providers can be a great source of support and information for caregivers in terms of confidence building and advisement.

The National Family Caregivers Association shares the following four-point message of advice for caregivers:

1)   Believe in yourself.

2)   Protect your health.

3)   Reach out for help.

4)   Speak up for your rights.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Ten Steps to Becoming Dead Right: Hospice Volunteer Perspective

If there’s one thing I’ve learned from years of hospice volunteering, it’s that death will come when it comes. Dealing with death can be so much easier when it’s approached like any other important life event. By following a workable plan, you can enjoy comforting closure when that ultimate destination is reached. Consider using these ten steps featuring scenic routes on your journey to becoming dead right:

     Ten Steps to Becoming Dead Right

1.  Accept death as part of life.

Death will come no matter how often the topic is avoided or how forcefully technology wrestles it to the ground. 

2.  Listen to the Universe.

Some say it’s the Universe. Many use God, Higher Power or other names. If you believe you are part of an infinite enlightenment, be still and listen.

3.  Expect rainbow smiles.

Rainbow smiles are joyous, healing, memorable moments that come more often when anticipated.

4.  Live a healthy lifestyle.

Practice habits of healthy living in all areas of your life.

5.  Be informed and proactive.

Keep abreast of what’s happening in life. When circumstances arise that can benefit from your input, apply what you know.

6.  Do your best.

You can’t solve every problem or be everything to everybody. Do what you can.

7.  Give service to others.

Complement others by fulfilling needs through service. Both server and recipient benefit from this partnership.

8.  Be grateful for blessings.

Blessings come like wondrous celebrations held in your honor. Let appreciation reign!

9.  Put death wishes in writing.

Fulfillment of your end-of-life wishes will often depend on what you discuss and record now. Get medical, financial, and property decisions in order.

10.  Have a dignified death journey.

Breathe in your final phase of life with contentment. Experience a dying process that brings beauty and calm to your personal letting go.

© Frances Shani Parker

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes 

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Holiday Blues Grief Support

The holidays can be a troubling time for many who are adjusting to the loss of loved ones. Through the years, people associate holiday traditions with familiar people and places. These suggestions  offer bereavement support for those grieving during the holidays:

Mourners have to decide the best ways they can adjust to the holidays. One option is to create new holiday traditions. If holidays were celebrated as a family, new traditions can be planned as a family, so everyone can have input. This will give family members an opportunity to discuss their feelings about the deceased loved one and possibly include something in the new tradition that commemorates that person in an uplifting manner. This could be a type of memorial that adds pleasure to holidays in the future, something that would have pleased the deceased.

Whether celebrating the holidays alone, with others, or not at all, people should always follow their hearts and do what feels best for them. There is no one way for everyone. There are different ways that work well for different people. Some people who found the holidays stressful, phony, or too commercial before their loved one died may want to redirect their holiday focus. They might choose to participate in an activity that is calmer and more meaningful to them such as volunteering at places where they can help others or sharing with others in another capacity. Others may want to celebrate alone or with a few friends, take a trip to another state or country, or just be involved with something they enjoy doing that may or may not have anything to do with the holidays, but everything to do with their own quality of life."

© Frances Shani Parker, Becoming Dead Right

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Holiday End-of-Life Conversations

The holidays often provide opportunities for families and close friends to get together, reminisce, and have a joyful time. But what about happiness in the future? Why not take advantage of this time together to engage in important end-of life conversations that can be crucial later in honoring end-of-life wishes of those you love and yourself.

Engage With Grace is a a movement aimed at promoting these kinds of conversations using the five questions below. They’re not easy questions, but they are important and shouldn’t be ignored. Sometimes we think we know what loved ones want, and we really don’t. Later in life, when several people are involved in making inevitable decisions about life threatening health matters, guessing, confusion, and hurt feelings can easily hinder progress. The key to preventing this negativity is having end-of-life conversations when they can be positive with personal input regarding what loved ones really want. Fortunately, many people actually enjoy discussing their answers with loved ones.

Add new meaning to your holidays by including thoughtful conversations that can improve quality of life. No one knows what the circumstances could be at future family gatherings during a healthcare crisis. You and your loved ones can benefit greatly from answering these questions and implementing the suggestions given. The Caring Connections website has information to help you with your plans. (Click on the questions below to make them larger):

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Hospice Volunteers for Pet Owners: Pet Peace of Mind (Video 8:06)

What would you do if you were dying with no one to care for your pet? What would happen to your pet if you actually died? If you had no reliable support system in place, your pet could end up at an animal control shelter where it might not be adopted within a certain time frame and could be euthanized. A national program for non-profit hospices, Pet Peace of Mind provides help to hospice patients experiencing these problems.  Funded by Banfield Charitable Trust, this program works with hospices in providing temporary and permanent care for pets of hospice patients. Care includes training materials, routine pet care, and tools to facilitate adoption.

For many people, their pets are their family, sometimes their only family.  They love and worry about their pets in the same ways others express concern about their children. When hospice patients are too ill to care for pets or need others to take full ownership of pets after they die, knowing a hospice volunteer will provide that care can be the difference between having a death journey with peace of mind or having one feeling depressed and anxious about the pet’s well-being. 

This video titled Pet Peace of Mind from Banfield Charitable Trust shows the importance of having a pet adoption program available for hospice patients.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Approaching Death: Dying Symptoms, Caregiver Support (Video 5:31)

The body knows when it’s time to slow down and die. Each body will die in its own way and in its own time when the process starts. I have been asked on several occasions to explain some of the circumstances that may be present when death is near. This excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes addresses that:

“Among symptoms of impending death, there might be decreases in food intake, swallowing, communication; and increases in sleep, weakness and spiritual awareness. The latter might include speaking to or appearing to look at, or dreaming about persons who have already died. Patients may become incontinent, agitated, confused, withdrawn, and congested. Bright light in patients’ eyes should be avoided. Patients should be turned gently when necessary. Hospice care should provide every reasonable effort to control pain and stabilize patients to a plateau of comfort. The hospice nurse or doctor can explain any changes that cause concern during the dying process.

Some caregivers become upset when dying patients lose their appetites. Because they view food as nurturing, they want to keep giving patients more food than they need. It is important to keep in mind that dying patients with little or no appetite are not starving or in pain from hunger in the manner that is commonly understood. They are responding normally to the body’s breaking down as part of the dying process. Swallowing may be difficult for them and could lead to choking when food is forced into their mouths. They could also become nauseous and vomit from being forced to take in food they do not want. Dying patients may also want less to drink. The insides of their mouths can be moistened with droplets or a fine spray, and a lip cream can be used, especially if they are breathing through their mouths. It is not unusual for breathing of dying patients to fluctuate from quiet to noisy or to have an irregular rhythm."

As much as possible, caregivers should remain calm and give patients reassuring presence. This video titled “Palliative Curriculum - Part 6 - Last Hours of Living” presents a scenario about a daughter’s concerns during her mother’s final days.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog