February/March 2014 Take the Healthier Barrington Survey!

The Healthier Barrington Coalition is conducting the 2014 Healthier Barrington Needs Survey. This survey has been conducted by the Coalition every three years since 1996 and offers residents living in the 60010 area an opportunity to provide input into the various aspects of living in the Barrington area. Topics include transportation, recreation, education, healthcare, employment and much more.

This year they have added questions related to whether people have advance directives and if they have heard about or used Be@Ease resources. The survey takes about 10-15 minutes to complete and can be accessed online at: www.TakeTheCommunitySurvey.com. If you are a resident of Barrington, please add your voice to the conversation – take the survey today!

I am Grateful there is a Community Program like Be@Ease

My husband and I are first generation immigrants. We come from a culture where the expectation is for children to care for their parents as they age. It is different here, and I want to be prepared. I have tried to talk to my husband about what I want for myself at the end of my life, but this bothers him.

I am so grateful there is a Five Wishes document and a community program like Be@Ease where I can turn for help and encouragement. I am completing a form for myself in order to spare my husband the agony of making difficult decisions if I cannot speak for myself. I will have my husband and each of our children complete one for themselves as well. Because the Five Wishes document includes sections addressing the spiritual and emotional needs of a person, I am comforted to know our Indian culture and religious traditions will be observed at my death. I feel so strongly about the need for people to define their end-of-life wishes, I have taken this document to my church group and will have a Be@Ease representative come and speak to us.

Nalini

In the last three years I have experienced the deaths of two family members. Their final chapters could not have been more different.

BeAtEase_Post-it-01On a very fundamental level, each one of us has a sense for how we want the end of our life to play out. Whether or not that “end” is achieved depends largely on how well we have communicated our most basic wishes to others. In the last three years I have experienced the deaths of two family members. Their final chapters could not have been more different.

My mother-in-law died unexpectedly in 2010 at the age of 68. She had a life-long fear of doctors and hospitals and did not want to go to the hospital – ever. She also didn’t want to talk about death. In the end, she died in a hospital after extraordinary means were attempted to revive her. She died exactly the way she didn’t want to – because she didn’t document her wishes and the emergency medical community did what they were trained to do – try to save her life.

On the other hand, her mother, my husband’s grandmother was still living in the area at the time. She was in her 90’s, but healthy and living independently until she broke her hip six months after she buried her daughter. She was a remarkable woman who found the strength to get through surgery and rehab and return home. With the help of her grandchildren and home health workers, she was able to stay in her home, but she worried about being a burden, despite assurances from family. Unlike her daughter, Mildred had her “affairs” in order. My sister-in law was her health care agent, she had her DNR, she had a physician who made house calls (yes, really – still in 2013!) but she still worried that her life would be prolonged and she would die either in a nursing home or a hospital, neither of which she wanted.

Mildred was increasingly voicing her concerns in early 2012 and we knew the only way to provide her peace was to have her tell us her plan. As a family, we met with her and had her clearly tell us what she wanted at the end of her life. She was clear she didn’t want life extending measures of any kind, she wanted to be in her home and she wanted to be free of pain. She also shared with us what she wanted for herself after her death, and where she wanted her final resting place to be. We had her physician come so that he could talk to her about her wishes, and know what kind of care she wanted and didn’t want.

In January of this year, Mildred began to show signs of rapid decline. She was born in Kansas in 1918 and lived a disciplined life. You did not give up doing what you were “supposed” to do merely because you were tired. And believe me, she was tired. My sister-in-law finally made the call for a hospice evaluation and she was admitted on a Sunday evening in early March due to failure to thrive. The family members that were there with her let out a collective sigh of relief. Once hospice was on board, Mildred felt she had the permission she needed to begin the active dying process. She got the pain management she needed, she was allowed to stop eating and her end came within 10 days. She died in her home just shy of her 95 birthday.

In retrospect, we, as a family, ultimately completed an advance care plan without the benefit of the Be@Ease program.   Knowing about Be@Ease now, and being personally involved with this initiative has helped me make peace with her death, knowing we did all we could do to make her end of life what she wanted it to be.

I have completed Be@Ease’s 3-step planning process for myself. It is never too early to plan for your end. It brings a certain peace and clarity to the now.

Rachel C.
Barrington, IL

Colleague is Unresponsive in Emergency Room

Recently, someone I work with came down with pneumonia and was rushed to the hospital. By the time my colleague realized she needed medical attention, she was unresponsive in the Emergency Room.  The staff in the ER called our place of work to locate a family member and determine if she had a healthcare power of attorney.  Her family lived in a different state, and it was very difficult locating someone.  She ended up on a respirator for a while, but fortunately she did recover.  The whole situation brought home for me, the importance of getting my own wishes written down and communicated – not only to my family, but also my physician and the local hospital.  Be@Ease allows you to accomplish this critical task easily!

Sue,
Lake Barrington, IL

January 21, 2014 New Resources Available at Barrington Area Library

The Barrington Area Library has added additional resources on the topics of planning for the end-of-life and preparing advance directives. Please take a moment and review the offerings under the Resources heading of the Be@Ease website.

January 10, 2014 Be@Ease Presents to North Barrington Elementary School PTO

Be@Ease continued its outreach within the Barrington 220 School District by presenting to the parents of the North Barrington Elementary School PTO on January 10. Those in attendance were briefed on the need for advance directives as part of every families healthy planning.  After being given an overview of the Five Wishes documents, members were also informed of the many resources available through the Be@Ease website.  PTO President Alexandra Bernardi expressed appreciation on behalf of the PTO saying, “Thank you for coming and talking about this very important initiative. I know it spurred thought and conversation in many that were there.”

January 2014 — Be@Ease Presented on The Conversation Project’s Community Call

Be@Ease was a featured presentation on The Conversation Project’s (TCP) Community Call in December 2013. This was the third such call hosted by TCP in conjunction with the Institute for Healthcare Improvement (IHI) as a way to bring organizations engaged in end-of-life issues to share ideas, experiences and strategies for building grassroots awareness and action around the issue of advance directives.

Presenting for Be@Ease was Syl Boeder, Director of Community Outreach; Laurie Kennedy, Project Manager, Marketing Deliverables and Budget; Rachel Cook, Outreach Volunteer; and Ellen Weiss, parishioner of St. Michael’s Episcopal Church and coordinator of the parish’s internal drive. Also present for the presentation was Bob Lee, whose Ride for 3 Reasons provided funding for the development of this community-based program; and Sarah Bealles, President and CEO of JourneyCare, one of the local partners and fiscal agent for Be@Ease.

The presenters highlighted strategic decisions in developing the program including the involvement of a broad base of community partners, positioning the program to appeal to multiple generations and to present it as one of the planning responsibilities every adult should undertake for themselves.

Below is a link to a pdf of the sides used in our presentation. Please contact us if you are interested in learning more or having us provide a similar presentation to your community or organization.

Be-At-Ease slides for TCP Call – edited 12-16-13 – FINAL

You are Never Too Young!

I applaud Bob Lee and Be@Ease for bringing this important topic to light. Before my 25-year-old single daughter moved across the country, she completed her Five Wishes and shared it with me. At first I was shocked because she’s so young but she was adamant that should anything ever happen to her, she wanted family and friends to know her wishes. It included everything from expressing her directives for medical treatment to gifting her few possessions, like her CD collection, to her brother. I think she’s ahead of her time in understanding just how important planning for the unexpected is for people of all ages. She certainly opened my eyes as has this community drive.

Marcia
Barrington, IL

I Have my Plan in Place! Thank You Be@Ease.

In August, 2004 my older sister came down with what she thought was a cold. After several days with no improvement, she made an appointment to see her doctor. At the doctor’s office she suffered a heart attack. Her doctor rushed her to the hospital, but she died on the operating table. She was 32 years old, and I was 17. No one in my family was prepared for her death.

This past August, my 49 year old aunt who had no prior health problems, experienced a stroke and was rushed to the hospital. The hospital staff got her stabilized and she appeared to be recovering.  Three days later she suffered a second stroke which left her in a coma.  My family was scrambling to kind any kind of paper work or documents that would give an indication of  how she would want to be treated in this condition.  Unfortunately, we had never spoken about it and our family had no idea. The damage from the second stroke was irreversible.  Two days later, without knowing of her wishes, it was decided to stop all treatment and to let her die. This was a very stressful experience for everyone in our family.

Several weeks ago, I heard a presentation about a program called Be@Ease. The program encourages people to think about and plan for what kind of care they want in case the unexpected happens. It also provides the tools to help people document their wishes for care at the end of their life and encourages people to share the document with others.

I am getting married in October of this year and it struck me that I needed to do this – for myself, for my future husband and for my family.  I am now an only child, and I will be responsible for making sure my parents wishes are fulfilled.   I called my mom and told her about Be@Ease, and that I wanted to talk to her about advance care planning.  She was relieved.   For a long time, she had wanted to talk to me about these issues, but she knew I wasn’t ready.  I was scared.

Now I feel like I have the clarity and the tools to complete this very important step in my life. I will celebrate my new life and my marriage knowing I have my plans in place.

Ebonie Williams,
Tinley Park, IL

Before a Crisis, Be Prepared

As an on-call chaplain at our local hospital,  I see many patients that are being prepped for surgery. More often that not, patient’s realize that they do not have a healthcare power of attorney or advance directives and need to put something in place.  With the surgeons, anesthesiologists, and nurses waiting – this is not the optimal time to be making these decisions.  It often contributes added stress at a time when the person needs peace of mind.

Appointing an agent to make health care decisions and articulating advance directives involves considering spiritual wishes as well as medical concerns.  These decisions need to be made before a crisis occurs.  This process needs to become a routine part of every person’s life so that forethought can be applied. We need to move away from the spontaneous, reflexive decision-making to a process that allows for deliberate, purposeful discernment, and time for the communication of our wishes to those we love and those who will provide our care.

Only when we can achieve this kind of planning and decision-making can we truly “Be At Ease”.

Don Andler, On-Call Chaplain
Advocate Good Shepherd Hospital