Life-Limiting Illnesses – When to Call Hospice

A life-limiting illness is an incurable chronic disease or condition that no longer respond to curative treatments.

Examples of a life-limiting illness include:

  • Alzheimer’s Disease or Dementia
  • Stroke
  • ALS
  • Parkinson’s Disease
  • Heart Disease
  • Pulmonary Disease
  • Liver Disease
  • End-stage Renal Disease
  • AIDS
  • Cancer

A life limiting illness, coupled with symptoms below, could be indicators of decline and hospice eligibility:

  • Frequent hospitalizations, ER visits, or visits to the physician within the last six months
  • Progressive weight loss (with consideration to weight gain factors such as edema, when applicable)
  • Decreasing appetite
  • Dysphagia or difficulty swallowing
  • Increased weakness or fatigue
  • Decline in cognitive status or functional abilities
  • Increasing assistance needed with Activities of Daily Living (ADLs)
  • Increasing pain or increasing difficulty in controlling pain
  • Increasing dyspnea or shortness of breath
  • Oxygen dependency
  • Reoccurring infections
  • Ascites
  • Increased nausea and/or vomiting that is difficult to control
  • A desire to forgo future hospitalizations
  • A request to discontinue treatment
  • Recurrent or frequent infections
  • Skin breakdown
  • A specific decline in condition

If you or a loved one has a life-limiting illness and are experiencing any of the above symptoms, consider speaking to your physician about hospice services. You can also call Premier Hospice & Home Health, and one of our team members can help guide you through the process of requesting hospice through your physician.

The Grief Survival Kit

Let yourself grieve. It’s important to let yourself take this roller coaster ride and feel your emotions rather than suppress them. No matter how hard you try to bury those feelings of grief, they will continue to resurface, and you won’t be able to truly move on. Start the healing process by giving into grief.

Lean on friends and family. Your friends and family expect you to be upset. While they may not always know the right things to do or say, they do want to be there for you even if it’s just to listen or offer affection. Never feel too proud or embarrassed to lean on them in this time of need.

Join a support group – online or offline. Whether you find a group through social media or in person, support groups provide ways to talk and listen to others who are in the same position and truly understand what you are going through.

Focus on the positive aspects of your life. The loss you are experiencing could feel like the worst thing that’s ever happened to you and no one can change your mind. Despite this, what you need to do is reflect on all the good aspects that continue to bless your life and are worth pushing through the grief.

Keep yourself busy. Become more involved, go on a trip, try something new – participate in activities you enjoy and that can keep you focused on something other than your grief. Redirect your energy into doing things you’ve always wanted to do but never prioritized.

Breathe. If ever you find the grief to be too overwhelming, take a few deep breaths. The body’s breathing becomes shallow when we are feeling tense or stressed, resulting in insufficient oxygen to the body. This adds to the stress you are already feeling, so focusing on conscious, deeps breaths helps you relax and breathe normally.

Journaling Through the Grief

Journaling while grieving can help you document and process the feelings of grief you are experiencing. As you begin the healing process and reconnecting with who you once were, you may start thinking about or telling yourself things you would want to record. Putting these thoughts and feelings into words can be very beneficial and help in better working through the grief. This is why it is a great idea to keep a grief journal.

There are many, different ways you can start to fill up your journal. From creative writing and poetry to journaling and writing letters to your deceased loved one, each way provides you with a venue to communicate without fear of being judged. Opening up and disclosing your feelings to others can be difficult, but each of these methods allows you to express what you are feeling in a more personal, therapeutic way.

Research demonstrates that grief journaling after a significant loss has beneficial value. Experts explain that ‘reconstructing your personal self-narrative’ is crucial to the healing process. A grief journal can assist you in recording your experience, recognizing patterns, and establishing growth.

Are you interested in grief journaling but aren’t sure where to start? Here are some writing prompts to get you started:

  • Today, I am really missing…
  • I feel most connected to my loved one when I…
  • If I could talk to you again, I’d tell you…
  • My goal for this week…
  • I know I’m going to be okay because…

Sandy Parker’s Experience as an Eleventh-Hour Volunteer

One basic value of hospice care is that no one should die alone without support or the presence of loved ones. In addition to caring for the patient, the loved ones of hospice patients deserve and benefit from support as well. Eleventh-hour volunteers are trained to keep vigil and provide that supportive presence to patients and families in the final hours of life. The following is Sandy’s story and her journey as an eleventh-hour volunteer.

Why Did Sandy Become an Eleventh-Hour Volunteer?

Sandy was already a volunteer with Premier Hospice & Home Health before she became an eleventh-hour volunteer. When the program director approached her asking if she would like to join the eleventh-hour volunteer program, Sandy immediately answered that she would. Since being with the program from its conception in 2015, Sandy has sat with more than 10 patients and continues to dedicate her time in between her busy schedule.

How the Eleventh-Hour Has Impacted Sandy

Sandy spoke about one striking moment that has stood out for her during her time as an eleventh-hour volunteer. She recalls sitting with a patient and his wife during her third assignment. As they were sitting knee to knee, Sandy and the wife talked for a long while beside the unresponsive husband. Despite the circumstances, her and the wife were laughing as Sandy listened to stories about the couple’s lives together. Sandy explained that it was so nice to see that the patient’s wife was so positive about life.

It was like two ladies telling stories over coffee.

As they continued talking, Sandy noticed changes in the patient’s breathing. When Sandy turned to check on the patient again, she noticed he had passed. When she told the wife, her response was, “What? Really? That was so peaceful.” They way she responded was very calm and steady.

Sandy went on to explain that she firmly believes the last thing to go is a patient’s hearing. As she explained this to the wife, Sandy said she believed the husband had heard them and realized how calm and joyful his wife was, and felt it was alright to leave.

“This encounter really made an impact on me because of the peacefulness of the situation. The wife had such a joyful attitude and I found it so wonderful. I was so blessed to be there for that moment.” -Sandy Parker

Why Does Sandy Continue to Volunteer?

“There is something about being with someone who is dying. Often, there can be a lot of stress on family members or friends, so someone needs to be with and advocate for the patient. As I said, I truly believe the last thing to go is hearing, and I don’t want the environment to not be peaceful for the patient. I need to be there for the patient and make sure there is a thread of continuity.”

“It is an honor to walk into a situation where I don’t know anyone and I am able to act as something concrete for both the patient and the family. I blessed to be able to put myself in these situations and be calm and focused. I always make sure to recognize the patient and acknowledge them when maybe others aren’t able to.”

If you or someone you know is interested in becoming an eleventh-hour volunteer, please contact Laura Ehmann at (602) 274-7572 or laura.ehmann@premierhospiceaz.com.

Susan Lee’s Experience as an Eleventh-Hour Volunteer

One basic value of hospice care is that no one should die alone without support or the presence of loved ones. In addition to caring for the patient, the loved ones of hospice patients deserve and benefit from support as well. Eleventh-hour volunteers are trained to keep vigil and provide that supportive presence to patients and families in the final hours of life. The following is Susan’s story and her journey as an eleventh-hour volunteer.

Why Did Susan Become an Eleventh-Hour Volunteer?

Many eleventh-hour volunteers’ journeys begin the same – a loved one passed away and they were unable to be there. It can be scary to leave a loved one’s side for even a second during their last moments of life. Susan Lee’s story is one very similar.

When Susan’s mother passed away, she had left her side for just a little while and, tragically, was not there for her mother’s last breath. Her mother passed away alone, and this is a fear that every family member struggles with when caring for a loved one during their final moments of life. Susan can relate to this feeling, and her motivation as a volunteer is to ensure others don’t experience it.

When Susan was approached to volunteer, she was immediately ready to help. She says,

“There are so many people who don’t have family around, and I don’t want anyone to pass away alone. I am someone there to watch over them, to make sure they’re getting their medication, and to ensure they’re comfortable.”

Susan has been with the program since its beginning in 2015. Since then, she has sat with more than 60 patients. As an eleventh-hour volunteer, Susan can make certain no one dies alone or that family members have someone to be with them.

How the Eleventh-Hour Has Impacted Susan

It was Susan’s first time as an eleventh-hour volunteer.

She was with a gentleman who had nobody. Susan could tell that even though the patient was not conscious, he could hear her when she was talking or feel her touching his hand.

When the time came for him to pass, the peacefulness that came over the patient was overcoming. Susan explains that she could see all the worry and pain leaving his face. As this was happening, a sense of peacefulness came over Susan. She felt privileged to be there for his last moments.

She’ll never forget this first experience and its impact.

Why Does Susan Continue to Volunteer?

“I continue to volunteer because everybody needs someone with them during that time. They’re unable to speak for themselves, so you need to be that voice for them. I can be there to watch them and make sure they aren’t in pain so they can rest peacefully.” – Susan Lee

“One of the best parts about it, is that even if I’m not feeling well that day, I go anyways if they contact me. When I get there, I don’t feel as sick or as tired anymore. It puts how I’m feeling into perspective and I realize I could be feeling worse than I am.” – Susan Lee

If you or someone you know is interested in becoming an eleventh-hour volunteer, please contact Laura Ehmann at (602) 274-7572 or laura.ehmann@premierhospiceaz.com.

 

Mickey Gulli’s Experience as an Eleventh-Hour Volunteer

One basic value of hospice care is that no one should die alone without support or the presence of loved ones. In addition to caring for the patient, the loved ones of hospice patients deserve and benefit from support as well. Eleventh-hour volunteers are trained to keep vigil and provide that supportive presence to patients and families in the final hours of life. The following is Mickey’s story and her journey as an eleventh-hour volunteer.

Why Did Mickey Become an Eleventh-Hour Volunteer?

At a young age, Mickey’s father passed away. As the oldest sibling of two younger brothers, she was expected to handle almost everything related to her father’s death. Afterwards, she felt as though she was ill-prepared for her roll and uneducated. In retrospect, she knew the job could have been done better. As years went on, Mickey had other close family members pass away. She recognized that she was able to handle the situation a lot better because of the experience she continued to gain each time.

Mickey continued to do research and apply her knowledge. Unfortunately, her husband passed away eight years ago. The one thing that was different, though, was her gained experience from similar situations. She explains, “I did an outstanding job. We were pleased to be able to help him have a nice death.”

At the time Mickey began volunteering, she was a pet therapist with Premier Hospice & Home Health. The volunteer coordinator mentioned the eleventh-hour volunteer opportunity to Mickey and she thought, “Yes, I could do that. And I could do that well.” Following that conversation, she went through the training process and realized this was some place she felt very comfortable.

“Oftentimes I am asked how I can do this and if it is sad. I always respond saying that it is not sad at all. To me, it is such a privilege to be able to do this and to be invited into a family to help them through a difficult time.” -Mickey Gulli

How the Eleventh-Hour Has Impacted Mickey

Oftentimes, the eleventh-hour volunteers do not know the story of their patient beforehand. If the experience is in a private home with family, volunteers can sometimes pick up bits and pieces of the patient’s life. In a facility, though, there is normally no one else present.

It happened a few weeks ago.

Mickey arrived at a facility to be with a patient in a memory care unit who had no family. Shortly after she arrived to relieve another volunteer, a staff member came in to say goodbye to the patient. Afterwards, the staff member stayed for fifteen minutes and talked with Mickey about the patient and how fond of her she was.

A few minutes passed, and another staff member came in to the room and started telling Mickey about the patient – how she was always so warm and positive.

A little while later, another.. and ANOTHER.

Mickey was simply amazed.

“It was so nice to hear these stories and how the patient impacted lives. To hear the stories about how happy she was – it wasn’t just a person dying in front of me that I knew nothing about. These stories personalized the experience. I thought about it for days afterwards.” –Mickey Gulli

Why Does Mickey Continue to Volunteer?

“I continue to volunteer because of the experience I have gained. It is such a privilege to be a part of this for so many families and to know that the patient is not dying alone in their bed with no one with them. Normally, the family can be uncomfortable with the situation. It can be apprehensive. My presence makes it more comfortable for them. I know that this is not for everyone and that not everybody can do this. I am pleased that I am in a position to be an eleventh-hour volunteer and that my past has brought me to this place.” – Mickey Gulli

If you or someone you know is interested in becoming an eleventh-hour volunteer, please contact Laura Ehmann at (602) 274-7572 or laura.ehmann@premierhospiceaz.com.

11th Hour Volunteers: A Supportive Presence in the Final Hours of Life

One basic value of hospice care is that no one should die alone without support or the presence of loved ones. In addition to caring for the patient, the loved ones of hospice patients deserve and benefit from support as well. Eleventh-hour volunteers are trained to keep vigil and provide that supportive presence to patients and families in the final hours of life.

What is an eleventh-hour volunteer?

Oftentimes, patients find themselves alone during their last days because they have limited or no family close-by. These trained volunteers are able to fill in when a loved one cannot or when a family members need a break or support for themselves during this time by offering warmth, compassion, concern and a healing touch. Simply offering gestures like sitting with the patient and/or family, holding hands, praying or sharing in silence make a world of difference during such a difficult time.

Premier Hospice & Home Health in Phoenix, AZ provides these services for our patients. After 12 hours of face-to-face training in the classroom, in addition to the standard volunteer training that is required, our eleventh-hour volunteers leave well-prepared and ready to offer their supportive services. This unique service is offered around the clock and it does not matter the location – in private homes, assisted living facilities, or group homes – our volunteers will be there.

How our program started:

In 2015, one nurse was discussing with coworkers about a patient’s family where the husband/father was dying. She explained that the wife was with him and the adult children had flown in with their families as well. Because of the patient’s last wish being to die at home, the family was distraught and constantly bickering over who knew best for him. In addition, none of the family had slept because they wanted to be there when he died and make sure they were meeting all his needs.

In response to her story, one of the nurse’s coworkers, Laura Ehmann, offered a suggestion – that they have a volunteer sit there and be with the family and patient during the final hours. They sent two volunteers, to sit in two 8-hour shifts, so that the family could rest. One volunteer explained,

“I made make-shift beds in the living room for the family. I had to be firm with them and promise to wake them if anything changed. Six hours into my shift, I noticed the patient’s breathing change. I woke the family up and everyone was able to sit on the edge, well rested, and be present with him while he took his last breath like they wanted.”

Driving home that morning, the volunteer realized that there needed to be something more to what she just did. As a result, Laura took the next nine months to write a training manual for eleventh-hour volunteers. This way, the volunteers are more prepared for similar situations in the future.

Our program now:

Now, Premier Hospice and Home Health offers 14 eleventh-hour volunteers. Some have even been with the program since its beginning.  These volunteers make a difference in the lives of their patients’ families. As one patient put it,

“I do not know how I would have made it through the night

if my volunteer had not been there for me.”

These volunteers continue to make an impact on patients and their families as they pass through hospice care. In November of 2016, Premier Hospice & Home Health was awarded the 2015 Excellence in End-of-Life Care award honoring services that go above and beyond. Our dedication to ensuring these volunteers are educated and prepared offers families the quality experience they expect and deserve from us.

If you or someone you know is interested in becoming an eleventh-hour volunteer, please contact Laura Ehmann at (602) 274-7572 or laura.ehmann@premierhospiceaz.com.

 

P.s. Be on the lookout for our next 11th Hour Volunteer articles featuring our volunteers and their journeys with this program!

Premier Bloomington 2018 caregiver of the year award!

Melinda Roach being awarded the 2018 Premier Bloomington caregiver award!

Premier Bloomington’s very own Melinda Roach receiving the 2018 caregiver award for the branch!

Congratulations to Melinda Roach from the Premier Hospice and Home Health Bloomington team for receiving the 2018 caregiver award! Your outstanding efforts have not gone unnoticed!

Now Hiring – Open Interviews!

Now Hiring - Open Interviews blue flyer. Join Tuesday January 29th and again Wednesday 20th!

Now Hiring – Open Interviews!

 

Join us for donuts and open interviews Tuesday, January 29th and again Wednesday, January 30th at our Kokomo branch located at 2529 Commerce Drive Suite A, Kokomo IN, 46902

 

Please bring a resume or have the ability to attach one following the interview! Please contact us if you have any questions.