When Your Massage Client Has Dementia  https://medium.com/@everflowing"


Providing massage for dying persons presents multi level challenges to me as a practitioner. One of these special challenges is working with persons experiencing dementia. One of the blog posts that has been archived earlier is titled The Lost Pause. https://medium.com/@everflowing" Please read that post as well, as it is the preparation for the following guidelines for working with clients with varying degrees of dementia.

The following guidelines will assist you in remaining sensitive in your communications:

*Always approach the person with dementia from the front and tell the person who you are. Communicate at eye level. This may indicate that you sit to say hello.

*Use short simple words and sentences.

*Speak slowly and clearly. Breathe between thoughts.

*Give one step directions. (Ex) “Hold my hand” rather than, “Reach over and take my hand.”

*Patiently wait for a response. Verbal response may be faster than body response. Allow time.

*If the body does not respond, repeat the request again exactly the same way as the first time. If there is no body response, add a touch cue. If action does not follow then say, “That’s ok” and state what you are going to do next. “I am going to hold your hand.”

*Be willing to repeat information or questions. Use the same words each time.

*Your client may forget who you are and what you are doing several times during a session. Be willing to repeat these very basic details as often as needed. This will require you to acquire permission over and over again in regards to touching your client. Permission and trust building are ongoing with the client experiencing dementia.

*The client may also suggest that you attend to an area of the body to which you have already attended. Be willing to touch the area again before moving on or simply repeat the actions.

*Clearly define what you are saying. (Ex) “I am using lotion,” instead of “I am using this.”

Cueing

*Cueing is talking the client through a request in specific terms. (Ex) Instead of asking a client to lift this leg, You will touch the area of the body affected, to guide the client through the action while giving the verbal instruction. You would say, “can you lift the leg that I am touching.” Once again you will touch the areas of the body affected by the request.

*Turn questions into answers. (Ex) “I am going to touch your shoulder” instead of, “Do you want me to start with your shoulder.”

Communicating with Family

Family members of those suffering with dementia are in a deep state of loss. They are watching their loved one lose every aspect of their identity in the world. They are in constant fear that their loved one will one day no longer know who they are. Family are many times relating to what they have lost rather than what is present. I learned this the hard way when I took a photo of one of my clients that I thought was radiant. He was beaming and so comfortable. I showed this photo to the family. It brought immediate pain to the mother who explained to me that the person in that photo was a mere shadow of who had been her son and never to do that to her again.

As a member of a health care team I have the opportunity to meet the person in the bed. I have no past experience to grieve. I only know who I see and feel in that moment. The full experience is much broader than that. I must stay gentle and aware of the larger picture. I have learned to hold my excitement and awe of my touch experiences and share them with the larger picture in mind and heart.

Don’t Take It Personally

*With short term memory loss there may be a sudden change in the relationship. You may be asked to leave or the client may simply say, “That’s enough.” Try and make each touch as complete as possible as the session may end at any time.

*Feedback and gratitude at the end of a session may not be possible with more advanced symptoms of dementia because the session is not retained consciously. Be alert to the feedback expressed through the body and in facial animation as you facilitate the session.

Over Stimulating

Stimulation is needed; however, overstimulation can be frustrating. Remember your client is integrating in slow motion. Perform bodywork for short periods of time. Work slowly so you can observe the body’s response. After the initial trust building and set up for your touch session, ten minutes of touching physically may be enough.

Remember that you will be returning the room to its previous arrangement. Rearranging the room is more stimulation and is still part of your touch session.

Reporting

Grandiose ideas such as having lunch in Paris or having intimate relations with the body worker may be a symptom of dementia. Always report any out of the ordinary behavior to a staff member on-site. Make written reports on your sessions and note any irregular behavior or accusations.

Always Remember Your Client’s Safety

Short-term memory loss and loss of motor control may indicate that your client can forget their physical limitations, such as not being able to walk. They may also not be able to clearly assess the edge of the bed. Stay alert to your client’s limitations, the equipment you are using, your surroundings, and the directions you are giving. Be alert, as well as compassionate.

Irene Smith www,everflowing.org

https://medium.com/@everflowing/beyond-massage-b27a3a73fc12

Check out my new blog page https://medium.com/@everflowing/touch-awareness-beatrice-2c8d46d375c2

The audiobook is now available, in addition to the paperback and e-book versions of my book "Overcoming the Fear of Death: Through Each of the 4 Main Belief Systems"

It is available here where you can also LISTEN to an Audio Sample of it:

http://www.overcomingthefearofdeath.org/audio-sample/

Here is a review of the audiobook by Greg Schneider:

"A Unique Look at the Taboo Topic of Death"

This excellent audiobook will help most anyone to begin the discussion on a topic most people avoid until they are forced to, either by a life-threatening diagnosis or a friend or loved one's imminent death. The book takes a simple, yet thought provoking approach to help you to begin to contemplate your mortality...not from a religious point of view but from a broad yet novel cross-cultural view. 

The end result is that the author helps you to look at this topic in a way that can help reduce your fears around this often taboo topic of death. 

My own advice to others who are in a situation where they are wanting to support a friend or family member who is dying, is to keep your heart open and don't let fear interfere with your experience. Those who took this approach generally came away from the experience transformed by it. 

Kelvin's book can help you prepare to have your own transforming experience. 

Greg Schneider, Founder & CEO, HEAL Project; Founder & President, Hospice Volunteer Association

Listening is our bridge to the deeper wisdom in a massage session with a hospice client. Entering into a hospice client’s space requires the practitioner to integrate into the existing experience. This requires the practitioner to pause, listen and observe the activity already in motion. This pause involves observing the environment and noting any obvious changes to the clients comfort care such as bed positioning or client positioning, Is there any new equipment by the bedside? What is the clients overall demeanor, skin tone, body animation? Are there sounds; labored breathing or moans? After a verbal intake from caregivers, this visual assessment, even before  entering the client’s immediate space, gives the practitioner current information about what is happening in that moment.

There may also be other support team members in the space. This is a common occurrence in hospice massage. The hospice massage practitioner is not the primary support as in other massage practice environments. In hospice massage the practitioner is a part of a greater support team. Although I may have an appointment I must take a seat at the larger table and integrate my piece of support with the wider care plan. The pause allows me to sense and feel the dynamics already present in the client’s space and assess how I might enter into the current dynamic without a sense of intrusion This might include speaking softer than usual moving slower or saying hello to a number of other visitors or team members before saying hello to my client or introducing myself to a new client. I may also need to sit while conversations or activities are completed or need to simply wait outside the room. There may be several layers of activity happening besides my appointment.

The pause also allows the practitioner a moment to adjust his/her level of receptivity to the physical pain and emotional stress that may be present in a dying person’s space. There are many layers of pain involved with the dying process. The client may be experiencing physical pain as well as depression and unimaginable grief in regards to leaving loved ones, the loss of one’s personal identity, regrets and all that one might process in reflection of one’s life journey. Others in the room, including the professional caregivers, will all be in various stages of grief and grieving in their own unique ways. Everyone experiences grief differently. Feelings may vary from anger, fear, and resentment to deep sadness and withdrawal. Attitudes such as mistrust, defensiveness, aloofness, chaotic humor, or the inability to process any new information, including my name and why I am there, may be exhibited as byproducts of grief.  The room is already full. There may be no receptivity to input. To walk gently and slowly and speak softly is in honor of the unknown and / or the unseen and unspoken. This is the silent dialogue we must pause and listen to.

The second level to this silent dialogue is that of the practitioner observing his/her responses to these dialogues and listening to one’s own dialogues that are triggered within oneself.

Both the physical and emotional dynamics of the client, the environment and those in the clients space require the practitioner to pause, observe and listen. To deeply listen requires a commitment to be fully present and available to the space in between the breaths; the silence. We listen with our eyes, we listen with our heart, and we listen with our hands.

The following protocol gives practical physical steps as a guide for entering into a hospice clients space.

• Begin entry with a pause. Be still.
• Feel your feet on the earth.
• Observe the moment and breathe.
• Observe your client’s environment; your client’s body. What’s happening? What experience are you entering into? What is your experience? Observe yourself.
• Breathe
• Integrate the experience you are witnessing.[ intellectually and through the senses ]
• Ask permission to enter into your client’s space.[ This may be a hello to other team members in the room and being asked to enter or with a lone client who is non verbal , stating what you are going to do and observing the body language as to comfort or discomfort to your entry.]
• Integrate into the experience you are witnessing[ Listen, sense, observe]
• Breathe with exhale included.
• Listen deeply, listen with your head, your heart and your body
• Ask permission to step to the bedside or chair.[ In case of a non-verbal client, state what you are going to do and evaluate permission or lack of, through your client’s body animation. This requires a pause for observation and a quiet mind.]
• Breathe with exhale included.
• At the bedside, ask permission to touch or state exactly where you are going to touch if the client is non-verbal.
• Observe your client’s body animation.
• Approach the body slowly, honoring the space around the body.[ The energy fields surrounding the physical body are scientifically the most sensitive of the bodies Move slowly and gently, so as not to create anxiety.]
• Offer the hands as a point of regard for whatever your client’s body is expressing.[ This is the practice of witnessing, rather than the intention to fix or change.]
• Always feel your feet grounded with the earth.
• Breathe with exhale included; rest and touch.
• Observe your client’s body responses and facial animation.
• Integrate the experience.[ intellectually and through the senses ]
• Listen to the silence, this requires a pause. Listen with your head, your hands, your whole body and with your heart.
• Observe your responses and breathe with exhale included.
• Continue to touch or massage with this pause [ the breath ] for observation and integration as your guide.
• Always feeingl your feet grounded with the earth.
• Always breathing. Always resting.
• There is nothing to fix; nothing to change; nothing to heal. Your experience is already perfect.

This is an excerpt from Massage in Hospice Care, an interactive iBook by Irene Smith

What do you do when a loved one is nearing the end of life? What happens when they start "seeing things and people" that you cannot see?
What do you say and do?

~ an essay by Kelvin Chin, Life After Life Expert ~ 

CLICK HERE to read the ESSAY:  

http://www.overcomingthefearofdeath.org/blog/2015/9/16/when-dying-people-see-things-you-cannot-see

Today august 24^th marks the 12th anniversary of the passing of my dear friend and teacher the late pioneering thanatolgist.  Dr. Elisabeth Kubler-Ross Every year on this day I post this precious story.

 We met in 1979 in Escondido California when I attended my first Life Death Transition workshop. Several workshops later Elisabeth wrote a reference letter in my behalf and told me to take it to hospice. So began my work with the dying and a 25 year friendship with a dear colleague.

Elisabeth was a person of passionate spirit and I learned from her to open my heart to the spiritual nature of life.  

Sunday August 24,2004 I came out of my shower and went into my bedroom and laid on top of the bed to relax and look out to the tops of the trees that give me so much grounded ness in my 3^rd floor attic apartment.

As I gazed towards the trees I saw a pair of wings rising from the stairs below my deck. I raised my head in curious awe when an eagle appeared and perched on my deck looking into my room." Oh my God! "I exclaimed." what is this?" It was a small Golden Eagle. It did not fly over. It came up to intentionally perch on the railing of my 3^rd story deck.

 I sat in utter amazement and wondered what it meant. After about two minutes it flew away. I immediately got my animal spirits book and looked up eagle, hawk. It said, A Native American omen of healing, rebirth, and a sign that I should be alert to what is coming ahead. The eagle is the messenger to God who takes our prayers to Heaven. I knew I was being given a very important message but I wasn't clear what it was. I emailed a good friend in Arizona and related the event.

Tuesday morning I received an email telling me of the death of my dear friend Elisabeth' Kubler Ross, I took a shower and went into my room to lay on top of the bed and look out to the trees. As I looked out I came to clarity:

Elisabeth's totem animal was the Golden Eagle. I wept in deepest gratitude for this gift and for the wisdom to recognize it.

At Elisabeth’s memorial service a Native American woman performed one of many rituals. As she spoke of the Golden Eagle being at the top of Elisabeth’s totem she asked us all to look up and imagine Elisabeth as a Golden Eagle. I smiled.

Many Blessings Irene Smith

As I sat and massaged my client’s hands at the dining table I felt a pull behind me. The pull became very strong. Holding one of my client’s hands I slowly turned around. Gayle, the Chinese speaking resident sitting at the head of the table, was leaning forward and moaning and calling  to me with her eyes. She wanted a witness for her pain.

Her eyes were intensely focused on me and now she was reaching out her hand. I responded and reached out one hand to her. She took my hand and leaned even more forward. I knew I was crossing professional boundaries.

I told my client I needed to be present for Gayle for just a moment. I let my client’s hand go and turned my body fully towards Gayle. Gayle moaned, looked deep into my eyes and continued to hold my out stretched hand. “I’m so sorry for your pain.” I said. Gayle responded with head nods. There was the passing of a moment .The touch seemed grounding and Gayle began to rest more comfortably in her chair.

In the next moment a staff member stepped up to the table and looked at me and said.” That’s not needed. She has had her morphine.” I looked up, said nothing and continued to hold Gayle’s hand. A nursing assistant at the other end of the table said, she’s right Gayle has had her medication she’ll be fine.”

I experience this concept over and over again. There seems to be a blanket belief that when one is on pain medication comforting isn’t necessary because the patient doesn’t feel discomfort.

After thirty five years at the bedside I can honestly say that there is always consciousness. My teaching to others is to always honor the consciousness. Honor the core being under the medication. Validate the person’s experience and hold that experience with the utmost compassion.

Touch is our original language. It is our birthright to bond; to connect. From my experience medication does not counteract the need to bond. In fact with the sometimes floaty out of body experience from some drugs, touch grounds and settles the body. Touch may be the anchor in a world that is turning round and round.

Many times medication interferes with the body’s ability to express discomfort but may not eliminate the discomfort.

In listening to many bodies with my fingertips I have the opportunity to hear the conversations that the body can no longer express through animation. I am the silent witness to these conversations.

This is an extremely compassionate and valuable offering at the bedside.

Always speak to the consciousness.  There is pure consciousness in every cell in the body deserving dignity, respect and validation. We deserve to feel connected through all stages of our lives.

Blessings, Irene Smith

w ww.everflowing.org

Before the Jan. '16 publication of my book, "Last Comforts: Notes From the Forefront of Late-Life Care," I'm now blogging at http://lastcomforts.com -- all about innovations and remarkable pathfinders in palliative and hospice care as well as in long-term care settings. Why? Because getting to a better future will require all of us to raise our voices to demand it.

 ​The latest blog post from our [Fear of Death: A Fear of Life] series from the HEAL (Hospice Educators Affirming Life) Project​ and the Hospice Volunteer Association

David Schneider, BBC Radio Show Host, talks to palliative care consultant Kathryn Mannix about what dying is like

David Schneider is terrified of death.

In his two editions of One to One he wants to try to overcome his fear by talking to those who have first-hand understanding of dying. In this programme, he talks to Palliative Care consultant, Kathryn Mannix.

With almost forty years of clinical experience and witnessing over twelve thousand deaths, she believes that a 'good death' is possible even when you are seriously ill.

She explains the process of dying to David. This, she believes, if accepted by the patient, removes much of the anxiety and fear surrounding the end of life.

To listen to the interview click here and scroll down to the [Fear of Death] section of HVA's National Hospice Document Repository (NHDR).

Greg Schneider
Founding Director/CEO, HEAL Project
Founder & President, HVA

The Hospice Volunteer Association (HVA) has developed a number of free and useful resources for hospice volunteer programs.  One is the National Hospice Document Repository (NHDR) which is brought to all HCF members as a public service to the hospice community and the general public. This repository is the largest collection of documents and articles relating to hospice and end-of-life (EOL) care in the world. Some of the ways that this repository will assist the community are:

• NHDR Document Index provides a list of document categories as well as descriptions of each document. The repository is primarily for hospice volunteer coordinators/managers to share training materials, volunteer program descriptions, volunteer job descriptions, outreach brochures, etc. with their colleagues.
• to inform hospice volunteer coordinators/managers about resources available to them for making their jobs easier and assisting them in training their volunteers.
• to share information relating to events, conferences, retreats and workshops that would be of value and interest to the hospice volunteer community.
• to share articles and other types of information that would be of interest to the hospice community. 

NHDR Article Search provides a Google search of hundreds of articles in the repository. You will find hundreds of articles across the following categories:

• [Advance Directives]
• [Alternative Therapies]
• [Awards]
• [Bereavement]
• [Business]
• [Children]
• [Communications]
• [Cultural]
• [Death & Dying]
• [EOL Care]
• [Euthanasia]
• [Ethics]
• [Families]
• [Healthcare]
• [Home Funerals]
• [Hospice]
• [Nursing]
• [Palliative Care]
• [Patient Privacy Act HIPAA]
• [Pet Hospice]
• [Prison Hospice]
• [Psychology]
• [Rituals in Dying]
• [Spirituality]
• [Training]
• [Volunteering]

Greg Schneider
Founder & President, HVA

Experience the joy of making a difference in someone's life! Whether in the home, on the phone, in office or stores, your unique interests, skills and talents are always appreciated.

Snowline Hospice Volunteers make a real difference.

Contact us @ volunteerservices@snowlinehospice.org

If you have a few hours a week to Volunteer Snowline Hospice is looking for you. We would like a minimum of 4-16 hours per month and a minimum of 1 year of service. We need Volunteers to assist with Pet Therapy visits, Music, Reading, running errands, and just providing time to allow our Pt.'s families a little time away from a stressful and difficult time.

Please email Bonnie Davis @ volunteerservices@snowlinehospice.org

[Fear of Death: A Fear of Life] A new series from the HEAL (Hospice Educators Affirming Life) Project​ and the Hospice Volunteer Association​

Often our fear of death is associated with the unknown. Anita Moorjani​ was interviewed on the Today Show about her own Near Death Experience (NDE), which gives us some insight into what dying may be like.

“Within four days [of the NDE], my tumors shrunk by 70 percent, and the doctors were shocked...” Anita's story was fully vetted by medical researchers and confirmed that her recovery from cancer could not be attributed to medical treatment because it was impossible for the body to expel that many cancer cells in 4 days. It is an astonishing story that baffled the researchers. You can find her original report on the NDE Research website at the link below. She has written an inspiring book describing her life experience up to and including the NDE titled "Dying To Be Me."

http://www.nderf.org/

Full article and video interview from Today Show: click here

Greg Schneider
Founding Director/CEO, HEAL Project
Founder & President, HVA

In 2020, one in six Americans will be an older adult. Younger volunteers are increasingly needed to meet the needs of this rapidly growing population. My earliest memory of feeding a nursing home patient was not after I became an adult hospice volunteer. It was during my high school days when I joined a school club that encouraged me to make a positive difference in people's lives through service. Many times long-lasting seeds for service are sown with the young. I actually started volunteering long before high school. Fortunately, I had opportunities to see service encouraged and modeled.

High school and college healthcare volunteers can benefit greatly in win-win partnerships that serve older adults. They often learn about career choices they may not have considered. On college resumes, potential employers look for service as an indication of good character. Some hospices and other healthcare facilities have teenage and young adult volunteers doing the following assignments:

http://hospiceandnursinghomes.blogspot.com/2015/04/young-volunteers-needed-for-older.html

Frances Shani Parker

http://www.francesshaniparker.com/

Beyond the Veil: Our Journey Home

by Diane Goble

is now available from most major book sellers in large print as a workbook to help caregivers and patients navigate through their end of life journey with grace and dignity to a peaceful transition.

Written by a near-death experiencer, melanoma survivor, hospice volunteer, transition guide, psychologist and septuagenarian, it is a textbook for caregivers who want to be more present with their patients, whether they are nurses, hospice volunteers, holistic practitioners or family members. The information in the book comes from a training course developed by the author in 2008 to encourage paraprofessionals to become Transition Guides (doulas or spiritual midwives) becauset the end of life, we are actually birthing the soul. 

It is also a journal for patients whether they have been diagnosed with a potentially terminal illness, are elderly and in failing health, or are perfectly healthy and want to feel empowered no matter how or when they find themselves out of their body and still conscious.

Information and questions are provided to guide people toward having The Conversation about their end of life wishes with their families and physicians, filling out Advance Healthcare Directives and POLST forms, understanding hospice and palliative care options, and considering the Death with Dignity option.

There are meditations and guided visualizations to help people process their life review, clear their conscience, make amends and come to terms with the end of their lives. The are instructions for writing one's own Personal Transition Guidebook, which may be read to the person as he or she is dying to guide the departing soul to the Light.

The information is based on the author's near-death experience during a white water river rafting accident during which she was given the choice to return to her body with a mission to teach others that WE DON"T DIE.

As Dr. Elisabeth Kubler-Ross said... We simply slip out of our body like it was an old worn out coat and step into the sunshine.

It is also based on her years of study into ancient religions and philosophies about the process of dying and ideas about an after life, and recent studies into the continuation of consciousness after death of the body.

The book is also available for Kindle, however that version is for quick reference as it is obviously not a workbook. Reviews posted to amazon.com and other sites are much appreciated. You're invited to contact the author through her blog-- Let's talk about death and dying...

This is a piece I wrote, appearing in this week's pulse -- voices from the heart of medicine.

http://pulsevoices.org/index.php/archive/stories/465-go-ask-alice

Best practice re: volunteer visit reports. Paper documentation from volunteer?  Reports sent by e-mail? Would the latter be HIPPA compliant?

Wow, This was a very powerful video.  This should be shown in hospice groups everywhere. Even though I have been working with dying patients for years, I learned a lot by watching this video.  Thanks Greg for sharing this.