‘The Journey’ Comes To An End, At Home…

By: DeAntha Wright-Thornburg

I mentioned earlier that my mother invited Hospice to her home last Thursday. She told all it was her choice and she wanted Hospice to help my siblings and I with her care. Death comes in its own time, in its own way. Looking back now, that day was the surge of energy that is mentioned that happens one to two days prior to death.

She wanted me to call her sister. I did, she told her not to worry, that she loved her, and that Hospice would be here to help my siblings and I manage her care. She talked to a couple of other neighbors that same afternoon. She wanted us to take pictures. So, we all stepped up without complaint and took pictures. The next 48 hours were both memorable and heartbreaking.

Hospice is a blessing for many families, unfortunately some wait too late for the family to share the full benefits. Hospice is a network of professionals who help the terminally ill and the elderly live comfortably and maintain their quality of life. A specially trained team of professionals and caregivers provide care for the “whole person,” including physical, intellectual, emotional, social and spiritual needs. Palliative care supports patience, independence, access to information and the ability to make choices about their care. Services typically include all supplies needed, including comfort drugs for each different situation.

Our nurse emphasized that quality of life as the most important gift. If my mother wanted a salty French fry from McDonald’s, we were to go out and get them. No drug is going to save her. That low salt diet was a thing of the past. If she desired to have a milkshake at 4 a.m. she could. Hospice is there to afford our loved ones that independence to live life each day as they wish.

Giving our loved ones the dignity to have a quality of life is critical to an end-of-life experience.  In some situations, those in denial (our family) hinder our loved ones wishes. My mother’s wish was to be surrounded by those who loved her. For those who cared for her it was difficult. Dying isn’t pretty, and it isn’t what they portray in the movies.  At 11:13 a.m. Sunday, Sept. 3, 2023, my mother took her last breath. Watching a loved one slip away is such a helpless feeling. What I want most is for others to understand for themselves and their loved ones. Ask for hospice on your final days, weeks, months. Hospice will help the entire family from beginning to end and beyond.

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Medicare Hospice Benefits

Who is eligible, what services are included, how to find a provider are important questions. Hospice care is a program of care and support by trained professionals for the terminally (with a life expectancy of six months or less). Hospice helps people who are terminally ill live comfortably. It isn’t just for people living with cancer. The focus is on the comfort of the patient, not on curing an illness.

Once you are enrolled in Hospice, a plan is put in place to monitor your care. It includes your family as top priority, doctors, nurses, counselors, social workers, pharmacists, physical and occupational therapy. In addition, Hospice nurses are on call 7 days a week, 24/7.

To find a Hospice provider one must contact their primary care provider, or call 1-800-MEDICARE. Medicare only covers your Hospice care if the Hospice provider is Medicare-approved.

Once your Hospice benefits start, original Medicare will cover everything you need related to your terminal illness. Hospice care is normally given in the home. The plan your Hospice team creates can include any or all these services.

Doctors’ services, nursing care, medical equipment (wheelchair, walkers), medical supplies (bandages and catheters, oxygen), prescription drugs, Hospice aide, physical therapy, social workers and dietary counseling. They also offer grief and loss counseling, short -term inpatient care and short-term respite care.

Dying isn’t pretty. One to two months prior to death. An individual goes through a withdrawal. As the individual begins to acknowledge that fact, a person begins to withdraw from the world around them. This is the separation, from the world with no more interest in newspaper, people, neighbors visiting. The processing of one’s life is usually done with the eyes closed, so sleep increases. With withdrawal comes less need to communicate with the physical life. Words lose their importance; touch and wordlessness take on more meaning.

Food is a way to energize our body. There will be a gradual decrease of eating, nothing tastes good. Cravings come and go. Our loved ones feel helpless that family will not eat.

One to two weeks prior to death: Disorientation, sleeping nearly all the time. There is literally one foot in each world. A person become confused, talking to people and about places and events unknown to others.

Physical changes: Blood pressure rates will either become increasing high and upward to more than 150 or decreasing down to zero. Increased perspiration and often a clamminess of the skin will take on a yellow color. Nail beds, hands and feet are often pale and bluish because the heart can’t circulate the blood.

Breathing changes also occur. Respiration my increase from the normal 16 to 20 to upward of 50 or 60 every minute. This can be puffing, and blowing of the lips on exhaling. The breathing changes come and go, one minute the symptoms increase and then decrease.

One to two days (to hours) prior to death: Sometimes there is a surge of energy. A person may be alert, talk clearly, visit with relatives, have a favorite meal, spend hours socializing with family and friends. The spiritual energy from transition from this world to the next has arrived and it is used for a time of physical expression.

My mother’s surge of energy was that Thursday afternoon when she welcomed the Hospice nurse to her home, made phone calls and posed for pictures. After this event there will be restlessness, breathing patterns change become slower and irregular. Congestion can be very loud. Eyes maybe open to semi open but glassy, not seeing anything, often tearing.

Hands and feet become purplish, knees, ankles elbows become blotchy. Generally, a person becomes non-responsive (unable to respond to their environment. How we approach death is going to depend upon our fear of life. The separation becomes complete when breathing stops. What appears to be that long last breath is often followed by one or two long spaced breaths and the physical body is empty.

– DeAntha Wright-Thornburg worked for the Indiana Department of Transportation for more than 30 years and is also a freelance journalist.