A Hospice Volunteer Breaks Barriers with Bubbles

by Sherry Rayner, Pathways Hospice Volunteer

The most heart wrenching yet fulfilling cases I’ve had as a Hospice volunteer has been with Pathways KIDS. During this time, I have learned that flexibility is the key and there is always a way to communicate.

My last case was with a Vietnamese family in East San Jose. Their youngest son, Jefferson Vu, was a 4-month-old patient who had a rare genetic disease. My job was to entertain his energetic 3-year-old brother, Truman, so their mother, Tam Vu, could get some much-needed rest and tend to her baby without interruption.

My initial contact by telephone was with the father, Ho Vu, who spoke English fluently. I knew he would be away when I visited each week. My concern was how I would communicate with the patient’s mother and brother, as I knew their English was limited.

As my first visit approached, I felt both anxious and excited. I carried a huge canvas tote bag filled with lots of toys, books and videos. Upon knocking on the front door of their condo, I was greeted by a sweet, smiling young woman and her active and excited 3-year-old son, Truman. Leaving my shoes at the door with families, I was graciously welcomed in.

I was then introduced to their precious baby boy, Jefferson. He was lying very still on a pink satin pillowcase in the middle of their big bed. In direct contrast to the rambunctious Truman, Jefferson was very still, tiny and fragile. He sounded like a wounded baby kitten when he cried. When he opened his eyes you saw big brown eyes looking back at you. His face would light up with the most radiant smile when spoken to softly.

Meanwhile, Truman anxiously eyed my canvas bag to see what I’d brought. Not being able to contain his curiosity any longer, we opened the bag. Out came a small nerf ball and a suction – cupped basketball hoop to put on their closet door. Truman was soon animation in action as he jumped and leaped trying to make a basket. When he made a basket, his Mom and I would clap with joy. During this time, Jefferson, the baby, slept soundly. There were two completely different worlds going on in one small bedroom.

Each week Truman would discover a new item in the canvas bag. Soon, he was helping me carry the bag up the stairs. The biggest hit of all was the “Bubble Machine.” Truman and I would go outside to the porch and play with a battery-operated bubble machine. At the flick of a switch, hundreds of tiny iridescent bubbles filled the air. Soon an excited little boy, ran, jumped, and squealed with joy. The smile on his face was only outdone by the sound of his giggles. He’d race around trying to catch every bubble, breaking it or holding it, letting them crash into him with glee. Needless to say he was hooked on the bubble machine and caught me by surprise when in English he’d ask for bubbles every visit.

One particular week, we were lying looking through his English/Vietnamese Kids Picture Dictionary when he focused on the medical page. He quickly pulled up his pant leg and showed me his scratch. I then showed him a scar I had on my leg. Much to my surprise he leaned over and kissed my “boo boo.” Tears welled up in my eyes as I held him and said, “Thank you, it’s all better now.” I was no longer worried about how we would communicate.

We played together for six months and in January 2007 Jefferson peacefully passed on, at home, in his mother’s loving arms with his brother and Daddy close by. What a cherished journey, never to be forgotten. I’ve learned there are always ways to reach out, but never imagined a bubble machine would be one of them.

About Sherry Rayner

Sherry Rayner has volunteered with Pathways Hospice for over 20 years. With her art teacher education and professional graphic design experience, Sherry is known for the creativity that she brings to her volunteer work. She began volunteering with Pathways after raising a family, care giving for several family members and volunteering with several other organizations. Known for brightening the days of patients of all ages, Sherry has recently specialized in the unique concerns of Pathways KIDS and their families.

Grief & The Holidays: A Time of Challenge & Hope

REMEMBERING

Soon it will be holiday time again and reminders of their loss are everywhere for those who are grieving. Traditionally this is a time of joy, sharing of memories, warmth, peace, and coming together in love.

For those who are grieving, the holidays are also a vivid reminder of those that are so dearly missed. Add to this the common expectation that all should be as it was and many grieving families find the holiday season to be the most difficult time of the year. 

The period after the death of a loved one is a journey through grief. We cannot forget and we cannot bury the pain. It is not easy. Our hearts, minds and bodies are grieving and not functioning in their full capacities, as though part of us is missing. 

Yet, we don’t have to hide from our experience of grief. These are natural feelings–they are all a part of the process–we can share them, we can accept them, we can feel them.

WAYS OF COPING

As the holidays approach, start with a blank slate. Accept that you may not have the energy or inclination to accomplish all the things that you or others have come to expect during the holidays. 

Rather than do things automatically, discuss and think about what you really want to do, what you don’t want to do, and what will be difficult but you want to try. We encourage people not to be afraid to make changes in traditions or start new ones.

Equally important is to acknowledge how you feel. It will be a sad time. Many recently bereaved worry they will spoil the holidays for others. According to families Pathways has counseled, the most painful thing is when they try to keep their feelings inside.

If friends or family members take the initiative to talk about the person who has died, it relieves the tension and creates an opportunity for sharing.

MANAGING YOUR GRIEF 

While there are no universal methods for healing and coping, there are some concrete things you can do that may make the holidays easier and provide an opportunity to honor those you love who have died.

  
Acknowledge your grief; accept yourself in whatever mood you find yourself.

• Remember you are not alone. Attend a remembrance event or grief support group.
• Make some personal choices based on your level and what is right for you.
• Give yourself permission to let go of certain traditions–it’s okay to make changes.
• Share your plans with others; let them know how they can help you.
• Reserve time to honor your loved quietly, alone or with others: light a candle, place a photograph on the table, share memories, make a memorial donation.

And finally, as you navigate through your grief this holiday season keep your loved one in your heart and remember to care for yourself.

Helping People with Dementia Cope with Grief and Loss

The death of a loved one is difficult for anyone, but it is a special challenge when someone in the family has dementia.  It’s hard for family members to know how and when to tell the person with dementia about the death.  And what should they do when the person doesn’t remember?

Coping with Losses

People with dementia have had many “little deaths” in the course of their disease—things like losing their independence and the ability to drive, read, cook or enjoy hobbies.  Memories and relationships are huge losses.  These losses are stressful for people with dementia and their families.

How people with dementia cope with loss is affected by many things, including: the stage of their dementia, their relationship to the person who has died, how often they were in contact with that person, and their personal way of grieving.

Grief Process

For people without dementia, recovery from a death usually involves accepting the reality of the loss, learning to live with it, and finding a new “normal.”  For most, the pain of the loss can transform into beloved memories.  For someone with dementia this process is often impossible.

People with dementia who are grieving are often agitated and restless.  They may sense that something is not right, something is missing.  They may confuse one loss with another.  A recent death may stimulate the memory of loss from childhood.  It can be stressful for family members to decide when and how to tell them about the death of a loved one—and even how often to tell them.  Repeatedly telling a person with dementia about a death can make family members’ grief more painful.

Telling About a Death

Here are some hints for telling a person with dementia about a death:

• Tell the news as soon as possible.  They will sense that something is wrong and need information to understand, even if just for that period of time.
• If you are too emotional to talk to them, find someone else—maybe a friend or healthcare professional.
• Choose a time to talk when the person with dementia is well rested.
• Use short, simple sentences.  Don’t give too many details; this may overwhelm them. 
• Answer questions as honestly as possible.
• Use clear words like “died” instead of “passed away” or “at peace now.”
• Try not to protect the person from the truth by suggesting that the person who has died is away and will return later.  This can cause worry and agitation later when the person does not return.
• You can support them with physical touch, such as a hug or holding hands.
• Consider involving the person with dementia in funeral planning, assigning a simple task.  This will help the death be more real for them.  They may recognize the rituals around death and act appropriately.
• Plan for someone to be with the person during services who can also take them out if they become agitated.

Accepting Death

Here are some ideas of ways to help the person with dementia accept the death:

• Speak in the past tense about the person who has died.  For example, “I loved Mom’s holiday cookies.”
• Talk with them about the person who has died and express your sadness.  “I sure miss Dad.  He always made birthdays so fun, didn’t he, Mom?  Remember when he….”  Bring out pictures and tell stories if this helps their grief process.
• Accept how often they want to talk about the person who has died—perhaps frequently, not much, or maybe not at all.

If over time they continue to ask for the person who has died, there are some things you can do.  In the beginning, gently remind them that the person has died. If reminding them becomes upsetting, you can try these ideas:

• Respond to the emotion under their words, feelings like sadness, longing, fear, distress, suspicion, anger, concern or confusion.  You can respond to what you see:
• “You sound really frightened (or lost, or angry, etc.) to me.  Let me help you with that.”
• “You must really be missing her.  Tell me what you miss most.” Share your own feelings: “I miss her, too.”
• Check their mood at the moment.  If the person is unaware and not distressed, you don’t need bring up the reality of what has happened.
• Look for patterns in the times they ask for the person who has died.  Look for an unmet need. For example, if the person who has died usually brought them coffee in the morning, the change in this routine could be distressing and remind them that their loved one is not there. 
• Use distraction only when other ways of dealing with their grief are not working.

Each family has to find what works for them, and then try to be as consistent as possible.  You may want to write out a simple plan for all family members and visitors to follow. 

You can be most supportive to the person with dementia if you also take care of your own needs and get support.  We encourage family members to find support to help them cope with the painful, frustrating, lonely and sad feelings that they may feel.  Supporting the person with dementia takes patience, but family members should remember to be patient with themselves as well during this stressful experience.

References:   http://www.nia.nih.gov/alzheimers;  http://www.alz.co.uk;  http://www.pathwayshealth.org

Minorities See Hydration Differently

Food or Medicine

Culture and ethnicity shape patient’s and families’ view about artificial hydration (AH) at the end of life, with ethnic minorities seeing it as food more often than non-Hispanic European Americans, according to 2012 research.

“Identifying some of the beliefs and barriers regarding the decision-making process in this challenging area may provide preliminary evidence for culturally appropriate end-of-life communication strategies and care that incorporates individual assessments of the pros and cons of hydrating in each particular context,” suggest Isabel Torres-Vigil of the University of Houston, Texas, and co-investigators.

They conducted an interview-based study of 122 terminally ill cancer patients, asking, “Are these fluids more like food or more like medicine?”  The study authors sorted answers as food, medicine, both or other.

Results showed 38% saw AH like food, 34% as medicine, 14% as both, and 14% as other (including vitamins and saline).  Ethnic minorities perceived the AH as food 66% of the time vs. 41% for non-Hispanic European Americans.

The findings were significant enough that the research team suggest when patients with advanced cancer begin to decrease their oral intake of fluids, healthcare professionals should ask what perceptions they or their caregivers have about the role of AH to promote the most patient-oriented approach to end-of-life care.

Source: British Medical Journal: Supportive and Palliative Care, July 2012.

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 26.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Special Diet Improves Mild Alzheimer’s

"Medical Food"

Giving 125 ml of “medical food” once a day to people with mild Alzheimer’s disease appears to improve memory.  These were the findings of a trial done in the Netherlands and presented at the 2012 Alzheimer’s Association International Conference. 

This was the second large study showing that diet with specialized “medical food” can improve memory.  A medical food is specially formulated liquid diet supplement for people with a particular disease or condition and is given under the supervision of a doctor by prescription.

The improvements continued for 48 weeks.  At the end of 24 weeks those who had been assigned to take a placebo drink were switched to the active treatment.  They also experienced significant memory improvement.

The medical food used in this study, Souvenaid, was developed by researchers at the Massachusetts Institute of Technology in Boston.  Lead researcher, Dr. Philip Scheltens, said that the food “is medical nutrition, and we think it may offer a new approach—a dietary management approach, if you like — for people with very early Alzheimer’s disease.”  He added that it is very safe and well tolerated.  No serious adverse events were reported in the participants who complete the trial.

This article was originally published in Pathways & Partners Newsletter - Issue 27.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Care Management: When Family Caregivers Need Help

We have an amazing new service at Pathways—Care Management. This service provides a nurse or social worker to oversee the care of an older person when loved ones need help to manage the care or don’t live nearby.  It can also provide one-time assessment and care planning for families.   This is an all-encompassing, privately paid service.

Here are just some of the valuable services care managers provide:

• Scheduling and coordinating medical and dental appointments
• Transporting and accompanying clients to health care appointments
• Helping clients comply with medications and recommendations
• Arranging supportive services such as home care, bill paying, transportation, housekeeping, meal delivery or a handyman
• Overseeing caregivers and other providers
• Arranging for safety devices and medical equipment such as emergency response systems, grab bars, shower chairs and wheelchairs
• Providing crisis intervention and supportive counseling
• Long-term planning for appropriate housing options 

Pathways’ first care manager is social worker Stephne Lencioni, LCSW.  She is a long-time supporter of Pathways, often referring clients to us in her 25 years of care management with other organizations.  We are thrilled to have the experience and expertise of such a respected care manager launching this program for Pathways.

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 26.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Telemonitoring: Catching Heart Failure Problems Early

Fewer Hospitalizations

Telemonitoring puts technology to work improving the lives of Pathways’ heart failure patients.  By catching problems earlier, it reduces hospitalizations.

Home Health nurses don’t visit daily, so telemonitoring gives Pathways a way to assess the patient 7 days a week, from our office.
 
The easy-to-use unit can give us the patient’s:

• Weight
• Blood pressure
• Heart rate
• Oxygen saturation

When a patient touches any button on the small unit, a friendly voice talks them through each step of the health check.  Patients also receive the data, giving feedback.

The information is sent automatically to a nurse via telephone: there is no phone charge to the patient.

Nurses monitor the health information daily, call the patient if necessary, and make home visits when indicated.

Pathways Telemonitoring Program Criteria

• Patient has heart failure
• Patient or caregiver can understand and follow instructions, and are physically able to use the unit 
• Patient or caregiver are open to telemonitoring technology
• Patient does not have an infectious disease (i.e. TB,  MRSA, varicella zoster, herpes zoster)   

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 26.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.