The Beauty Bus

I wanted to write this post to highlight a great organization I have partnered with to enhance the quality of life of those I’ve cared for with chronic or terminal illnesses. When I was doing hospice full time, not by chance, one of our social workers found out about the Beauty Bus. Because of the great work the caring women of the Beauty Bus provide, we would receive great feed back from our patients. It became humorous when during our interdisciplinary team meetings, it would come time to have the social worker’s input as to possible interventions, we’d all say in unison, “we know, The Beauty Bus!” I personally want to thank The Beauty Bus Foundation for the great work they do. I personally have witnessed how they truly increase the quality of life of every person they touch. Please read more about them below and support them by donating your money or time, sharing their information with others or becoming inspired to do the same in your community. 

About

The Beauty Bus Foundation was founded in loving memory of Melissa Marantz Nealy who passed away the age of 28 from a degenerative neuromuscular disease. Melissa loved a good day at the spa. When her ability to leave the home became compromised, Co-Founder Alicia Marantz Liotta, Melissa’s cousin, was able to schedule in-home beauty services through her connections within the beauty industry. Witnessing the hope, happiness and respite these services brought to Melissa, Alicia and Co-Founder Wend y Marantz Levine, Melissa’s sister, were inspired to launch Beauty Bus Foundation. 

Mission

Beauty Bus Foundation delivers dignity, hope and respite to chronically or terminally ill men, women and children and their caregivers through beauty and grooming services and pampering products.

Beauty Bus accomplishes our mission through:

  • In-Home Beauty and Grooming Services:  Beauty Bus’ core program provides in-home beauty and grooming services, free of charge, to patients whose illness or condition prevents them from accessing a salon or spa and their caregivers.
  • Pop-Up Salons:  Beauty Bus creates Pop-Up Salons where patients and caregivers receive a variety of complimentary beauty and grooming services in a setting that promotes support and serenity.
  • Bag of Beauty Program: Beauty Bus gives complimentary Bags of Beauty filled with pampering products to remind patients and caregivers that they deserve to look and feel beautiful.

 Here is an experience of a Beauty Bus volunteer:

“I wish you could have been with me on my Beauty Bus visit yesterday. Then you would understand why I volunteer for this organization and how it always touches my heart.

The client is fairly young to have to experience the health issues she is dealing with. She’s had a stroke, has extremely limited motor functions, and during our visit she was unable to talk. But talking for her was unnecessary. Her face said it all.

She is beautiful! But after her facial, her face glowed and she looked so radiant. I offered her my little pocket mirror so she could see herself and how beautiful she was. We held the mirror together as she smiled and just stared. She continued to stare for a good 5 to 10 minutes until we had to take it away so she could get into bed. As she looked at her reflection, I could see the joy radiating from her eyes and her smile never left her. She smiled through the entire visit. It warmed my heart and touched my soul.

When the professional and I went to say good-bye, surprisingly, she reached for the professional’s hand (which was not easy for her), grabbed it and held it for several minutes as if she didn’t want to let Lynette go. And that smile never faded. I’m wondering if she is still smiling. This touched me so deeply that even now I sit here typing this with tears threatening to cloud my vision.

This is why I volunteer for this amazing organization. To experience the simple pleasures we so often take for granted, and watch in another’s face the precious gift just given. Beauty Bus brings dignity, beauty, joy, some pampering and the gift of knowing they are special.

I love my volunteer work!”

 

The Beauty Bus Foundation Information:

2716 Ocean Park Blvd., Suite 1062

Santa Monica, CA 90405

Phone: (310) 392-0900

Fax: (310) 392-0907

Website: http://beautybus.org

Email: beauty@beautybus.org

Twitter: @beautybus

Facebook: http://www.facebook.com/beautybus

 

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Palliative Care in Extended Care Facilities

Post by: PalliNP

When a loved one is in an extended care facility, Medicare rules will allow for 100 skilled care days. But what if that patient needs hospice care? Medicare will not pay for both hospice care and skilled nursing home care because they are both billed under part A. That leaves families with a large bill for room and board. Many cannot afford this, and so they forego hospice care in order to maximize their Medicare payments. If a patient has Medicaid coverage, they actually might be better off. Medicaid will pay for room and board and Medicare will pay for hospice.

Many extended care facilities are stepping into the gap with “palliative care”. What exactly is this care?

An interview with several staffers at ECFs that offer long term “palliative care” reveals that it is not what we have come to understand as palliative care. Comments such as “we can give morphine” and ‘we can give 24 hour care” show that much education is needed. The patient may get pain and symptom management and no one questions that a caring staff will try to provide that extra TLC. In an already overburdened system, the extra eyes ears and hands of hospice professionals would be welcomed. None of the staff, including the medical director, will likely have advanced palliative or hospice training and expertise. The patients and families in these programs do not get the hospice team or psychosocial support that hospice provides. But they are providing a service that is much needed, however incomplete.

What is needed is a major change in Medicare rules about extended care and hospice coverage. But until then, palliative care services are stepping up to support patients and families by bringing teams into facilities. Palliative care, unlike hospice, can be delivered alongside ECF care and will be paid for by Medicare under part B. In addition to advising and offering recommendations about care, the palliative team can model how to have difficult conversations, ways to explain the dying process and progression of disease, and offer staff education opportunities.

Dispelling the Myths About Palliative Care

Dispelling the Myths About Palliative Care

In a great post by Helen McNeal, Executive Director of the California State University Institute for Palliative Care at CSUSM, she dispells 6 major myths about Palliative Care. In my experience, there continues to be significant confusion between hospice and palliative care and what is the relationship between them. I believe understanding the differences and reviewing the myths bout Palliative Care are instrumental to allow increased access to this very important care model. Please share this with as many of your contacts as possible whether you are a lay person or health care provider.

She begins the article by stating, “Almost everywhere you turn today in the media, there is some reference to palliative care.  Therefore, it is surprising how much confusion exists within health care in general but particularly amongst physicians about what it is, why it’s important, when to refer, etc.  And, generally, I see much more of an ostrich-like posture about the response to this confusion on the part of many health care providers than one would expect.  Given our aging population and data that demonstrates that palliative care increases longevity, reduces readmissions and improves outcomes, if this were a drug, everyone would be prescribing it.  Instead, for many patients and families, getting a referral seems like hand-to-hand combat.  For palliative care teams, education and building a referral base is a strategic, needlessly time-consuming one-on-one relationship building process.  Isn’t it time we all got on the same page?”

Helen McNeal goes on to discuss the following 6 myths:

  1. Palliative care equals hospice.
  2. Palliative care is only in hospitals and hospice is at home.
  3. A referral to palliative care means giving up active treatment
  4. Palliative care is only about pain and physical symptoms.
  5. Asking for a palliative care consult means giving up caring for the patient.
  6. Isn’t palliative care just good medical care?”

“Watching Gunsmoke”

By: PalliNP

Marie was a tough matriarch of a family with five children and had lived through the Depression and WWII rationing without complaint. She had buried two babies and one husband and went on keeping her farm and mostly fending for herself.

Here she was admitted to the hospital with advanced COPD and as part of the workup her doctor has told her that she has metastatic lung cancer. She took the news with a stony silence and the oncologist left thinking he couldn’t get through to her. Her children, now in their 60s were upset and worried but determined to honor her wishes, whatever that might be.

I had visited Marie and her sons and daughters several times and it was clear that they wanted to bring her home with hospice support, but Marie seemed withdrawn and they couldn’t get her to say what she wanted.

I stopped by her room mid-afternoon and Marie was alone. “Sit!” she said, indicating a chair next to the bed. She was watching Gunsmoke on TV, and she took my hand without looking away from the TV. We sat in silence for 15 minutes or so, and then I heard a whisper:

“I’m afraid.”

“What are you most afraid of?”

“Pain and suffering.”

“We will do everything we can to keep you as pain-free as possible; you have to tell us when you hurt.”

“I know I’m dying.”

“Are you afraid to die?”

“No, I’m afraid of what comes before I die.”

“Are you worried the kids won’t be able to take care of you?”

“Yes.”

I then told her about hospice services, particularly that they are experts in managing pain and other types of suffering. I explained that they will bring in expert help to support her kids in her care, be available by phone 24/7, and be there for them when they need it.

“OK. Sounds good.”

When her daughter returned from her lunch, we were again sitting in silence watching Gunsmoke, but Marie was smiling.

New Blog Contributor

I’m happy to introduce our first guest blogger. PalliNP is a palliative care nurse practitioner in a small midwestern hospital. She is “trying every day to relieve suffering.” She takes her motto from St. Teresa of Calcutta: “Do small things with great love” I’m sure we’ll be touched and enlightened by her posts. 

Trach and PEG

There I was in ICU rounds (the Palliative Care Team attends ICU rounds) shaking my head as usual. One of my nurse practioner students told me she disliked going to ICU rounds because it was like a “Nursing Home.” She was saddened to see so many geriatric patients, in the ICU, mostly with a poor overall prognosis. The words “Trach and Peg,” ran through my mind for hours after rounds because so many patients were being “Trached and Pegged.” Those words brought so many negative emotions and feelings; sadness, fear, isolation, pain and suffering to name a few. The words and images burned into my mind, that for the rest of the day it was like a song that haunted me…”Trach and Peg, Trach and Peg.” The words bothered me to the point that I had to write the following:

“Trach and PEG”

“Trach and PEG”

Those words sound horrible in my ears.

Unknowing to families an artificial prison for months or years.

The family will never know what to expect.

Bedsores, UTI’s, pneumonias, you name it, continue to occur even without neglect.

Most families doing the best they can,

thinking that this is the best plan.

While I make rounds in the ICU

will the patient suffer through another code blue?

“Trach and PEG”

“Trach and PEG”