Sarah Neeley

I’ve been part of the Alive Hospice team for the last 27 years. For two of those years in the 1990s, I was a home care admission nurse. I would see potential patients who often were unsure if it was the appropriate time to become a hospice patient.

I would tell them that the worst they ever had to feel was the day before their hospice admission.

When people heard that we could control their discomforts, whatever they were, we could help them feel better. I explained that the role of a hospice nurse is to stay two jumps ahead of their disease, to plan, and educate about what to expect and what to do when (not if) these symptom occur.

People were always surprised to hear that we can make them feel better. The interdisciplinary team provides the care with the social worker, the chaplain, the hospice aide and the volunteer help. The patient may be concerned about how the illness and care are affecting the spouse or caregiver. Bingo! The social worker is there. The patient may have spiritual issues regarding his or her illness and prognosis, so the chaplain is there.

A volunteer can be present for all types of help be it massages, errands or just friendship. The hospice aide (a CNT) provides personal care (bathing, grooming, etc.) and alleviates this task for the spouse or caregiver.

When there is a limited life-expectancy, regardless of the illness, hospice needs to be present to ensure you will feel the best you can feel, as should the caregivers. Our care begins the day of the admission; the admission nurse recognizes symptoms and intervenes immediately.

It’s worth repeating: The worst a person has to feel is the day before his or her hospice admission.

Sarah Neeley is Alive Hospice’s clinical nurse educator and the proud mother of a recent college graduate!

Nanette Mathe

One of the first questions I ask a patient after he or she has been admitted to our care is, “Do you attend worship services?” If so, I ask where and who his or her leader is and if their faith community is helping them at this time. They may be bringing food, visiting, or praying for the family.

If the patient has a faith community, I explain that my support is secondary to their faith community support. The patient usually has a good and longstanding relationship with his or her community and looks to the leader for guidance.

The faith leader plays an important role in the life of the patient and family members by providing support through visiting, prayer, scripture and the assurance that the patient and family will be cared for. The faith leader may also provide forgiveness, absolution, reassurance about life after death, and may be called upon to provide guidance with end of life decisions.

On a related topic, Alive Hospice is offering a faith leaders’ conference on August 6 that will explain hospice and help faith leaders understand the care the patient is receiving and the important role he or she plays in supporting the patient and family. It’s free!

Alive Hospice’s interfaith chaplains will offer insights and tools that can help turn a difficult visit with a dying patient into a very meaningful experience for all involved.  I am honored to be one of the presenters and will be talking about a patient/friend of mine, the care she received from hospice and the lessons I learned about living from her.

Please join us! To register, call 963-4831 or send an e-mail to kking@alivehospice.org by July 6.

We wrapped up our summer camps on Friday, and what memorable experiences they were! We welcomed 41 kids to Camp Evergreen in Kingston Springs June 2-4, and 37 kids to Camp Forget-Me-Not in Murfreesboro June 16-18. They came from lots of different places in Middle Tennessee, but what they all had in common was that they lost someone they love.

At Camp Evergreen and Camp Forget-Me-Not, they learned things they’ll carry with them the rest of their lives. They saw that they weren’t alone. They learned healthy ways to cope with loss and ways they can remember their loved ones, and they saw that it’s OK to be kids, too.

Here’s a look at our summer at camp:

Ruth Williams

Feelings are something all of us experience. As a psychotherapist for many years helping folks deal with a wide range of problems, I have observed that we often have a very limited vocabulary of feeling words.

At Alive Hospice’s children’s grief camps, we always dedicate one small-group activity to the topic of feelings. At our most recent camp earlier this month, in our group of 9-10 year olds, we decided to brainstorm as many feeling words as we could come up with. We came up with almost fifty! Impressive, huh? However, in most of our day-to-day conversation, we probably stick to the most familiar: sad, mad, glad, scared…

One that often pops up in my sessions with grieving persons is guilt. It most likely comes after some trust is developed in our relationship, because it’s one many people are hesitant to share. Guilt is one of those kinds of emotions that has some discomfort attached to it. Not that all other feelings are all comfy, but guilt relays the notion that something could or should have been different than what it was. That doesn’t feel very good.

Perhaps a wife feels guilty that she was ready for her husband to die. Perhaps he/they had suffered for so long, she was as ready as he was for him to let go of life on this plane of existence. Or, perhaps, their life together was filled with nothing but pain. Relief from that pain would be welcome. It happens!

And then, when a person has the courage to admit that to someone else, the feeling of guilt comes along with it.

Or, perhaps there is guilt attached to not having done enough or making so-called wrong decisions about a loved one’s care.

I believe guilt is an emotion felt by many of us. Regret over what wasn’t or what could have been often fills our already over-burdened minds and hearts. A “healthy” dose of guilt can help in some situations if it gives one the energy or ability to make a needed change. Otherwise, it can often help to be able to let it go.

One of my hopes for the process of counseling is for individuals to come to some sense of acceptance. What has already happened cannot be changed. Most of us can accept this on an intellectual level. Sometimes it takes a trusting relationship with someone like a grief counselor or a chaplain or clergyperson to be able to experience forgiveness and acceptance on an emotional level.

Ruth Williams is a counselor with Alive Grief Support Services, the bereavement support program of Alive Hospice.

Janny Adkins

Patients, families, and health care providers are often hesitant to call in a hospice program because they mistakenly believe that hospice equals giving up hope. I would say in reality, a referral to hospice is a redefinition of hope, one that includes hoping for an increased quality of life.

Yes, a hospice referral indicates that the patient is experiencing a life-threatening disease; however, it is not always an imminent death for the patient. Believe it or not, research indicates that with specific diseases like Congestive Heart Failure, a patient enrolled in a hospice program may live approximately 86 days longer than patients with the same illness who don’t have hospice. With cancer patients, the number of increased quality days averages 30. Further, patients are sometimes discharged from hospice programs for extended prognosis, a fact that many patients and families are unaware of.

It is a good idea to enroll in a hospice program earlier than later. Patients and their families benefit from the team of expert health care professionals who are assigned to help them from a physical, emotional, mental, and spiritual perspective. As care is given to the patient and the family, caregivers benefit from the hospice team as well. At Alive Hospice, crisis is often prevented as there is a 24/7 access line for caregivers which they may call for help from hospices nurses. Families can keep their loved one at home with them for longer periods of time, as well as avoiding the dreaded frequent trips to the hospital emergency rooms to manage crisis situations.

If you would like more information about Alive Hospice please call me at 615-210-5093 or e-mail me.

Janny Adkins is an Alive Hospice account executive who informs health care professionals, patients, and families about hospice care.

Lisa Graham

People always seem so surprised when hospice comes in. It seems that often times the word “hospice” has almost been held as taboo, something folks don’t want to talk about or consider, especially up close and personal.

Many seem to have the misconception that hospice admission is in exchange for hope. Occasionally they think it means their doctor has given up on them. A lot of times they think someone is going to come in and sedate them so they can go ahead and die. They think it is a somber time that they wanted to avoid as long as possible, until perhaps a physical ailment such as severe pain brings them to the point that they’re willing to do anything.

Then comes the good part: They invite hospice into their lives. Right there at the hospice admission, hospice services are explained to them. They hear that they receive their own care team (an RN, a social worker, chaplain, hospice aide/CNT, and a volunteer). They learn that they are furnished with durable medical equipment to help make life easier and more enjoyable such as a wheelchair, cane, or walker, lift chair, shower bench, hospital bed in their home, etc.

They learn that hospice meets them exactly where they are to make life more livable to the fullest extent. They find that hospice nurses and physicians specialize in pain and symptom management and that all medications needed to control bothersome symptoms are provided by hospice. Whether it is pain, anxiety, loss of appetite, constipation, nausea, or depression, if it is a symptom that is causing discomfort and interfering with optimal quality of life, hospice recognizes it, reports it to their physician, and provides the medication to treat it, usually having it delivered right to their doorstep.

So right there at the point of admission, I see faces change. I see tension loosed. I see furrowed brows replaced by wide smiles, and I see clenched fists replaced by open arms. I have received a multitude of the richest, most heartfelt hugs one could ever dream of receiving right there at the doorstep as I exit a hospice admission visit. I am blessed to exchange many more genuine loving hugs as I continue to visit my patients and see their physical symptoms relieved, their fears addressed, and their quality of life improve as they spend time with their loved ones and friends, exchanging love and joy, tears and laughter.

Hospice is great! Life is good!

Lisa Graham is an Alive Hospice home-care nurse.

Earlier this week, the Wilson Post newspaper published the beautiful story of an Alive Hospice patient’s voyage through the last few months of his life — and an unforgettable day on the lake, thanks to his Alive Hospice chaplain and some friends. This story shows just how much living is left to be done, even (or especially?) in hospice care.

Click here to read the story. It’s one you won’t soon forget.

Additionally, the Daily News Journal recently spotlighted Alive Hospice’s upcoming Camp Forget-Me-Not, a summer day camp for grieving kids ages 6-14. Click here to read how it helped one family (and how it can help others).

The June 2010 edition of Palliative Care Grand Rounds, hosted this month by Julie Rosen at the Bedside Manner blog, has been posted. Palliative Care Grand Rounds is a monthly round-up of compelling blog entries focusing on hospice, palliative care and grief matters. Check it out!