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Hospice Resident Inspires Others by Sharing Incredible Legacy of Love

May 29, 2015

Those of us who are privileged to provide care and support as volunteer and paid staff members at Hospice of the Western Reserve are often inspired by the wisdom, strength and incredible dignity of our patients. It’s what keeps us coming back. It’s what makes hospice a calling, and not a job. It’s why most of us who work here are committed to supporting and spreading the mission of Hospice of the Western Reserve for life. Such is the case with Malik, a current resident of our David Simpson Hospice House on E. 185th Street.

Malik suffers from Duchenne Muscular Dystrophy. He is currently bedridden and on an assisted breathing machine. Members of his hospice care team have repeatedly expressed how honored they are to care for this incredible young man. Recently, they joined Malik for a very special 19th birthday celebration complete with cake, music and photos. In attendance were his twin sister, Malikah, his mother, other members of his family and friends. It was a day to remember.

Malik, who was born on Feb. 15, 1996, has endured a very difficult life, including moving in and out of foster homes most of his life. He lost two brothers to the same disease, but is fortunate enough to have a healthy twin sister, Malikah, who has helped care for him. As part of his legacy, Malik expressed a desire to share his story with others. The following words demonstrate that despite suffering beyond his years, his spirit is one of hope, and his outlook remains positive. All those who have met Malik agree that he is a truly good and loving person. We’re honored to share his story here. The following account was written three years ago, when Malik was 16.

 The Story of Malik

I’m a 16-year-old-young man working with a great challenge. Like my two older brothers Byron and Paul I have been chosen to deal with Duchenne Muscular Dystrophy, a devastating genetic illness, which shows up as a weakness of the muscles when a boy is around five or six and quickly gets worse. As I am still learning, the disease is my enormous burden but, strangely, I am also coming to learn it is my blessing.

Why do I say that? I say that because I think the illness with which I struggle 24 hours a day has taught me about life, about the preciousness of all souls and about the healing wonder of love. I am still learning how God’s way can be mysterious and very difficult while remaining a path given to us so we can learn, grow and ripen as souls.

That’s what I feel on a good day, maybe I should say in a good moment. On a day or a moment that are not so good, I am likely to be angry, scared, confused or in grief over how much I have lost and how difficult it is to bear the particular cross my older brothers and I have been chosen to bear.

 During the most difficult years, both Malikah and I found a refuge from our situation in school. I spent more than eight years at Sunbeam School on Mount Overlook Avenue. On the basis of its standardized test results, Sunbeam has been rated as a “Great School.” During all those years, school was a positive place to escape from the troublesome situations.

 Malikah was helpful in my learning to read and write. I am grateful to her for that as I am for so much more that she has given me.

My good experience at Sunbeam has been repeated in a good experience at Lincoln West High School, thanks in part to several health aides and teachers I particularly like and who have been extremely good to me.

I haven’t been at Lincoln nearly as long as I was at Sunbeam. At present, I get picked up at 7 a.m. and come back on the bus after 2.30 p.m. Lincoln has become home and is a community that has embraced and nourished me. It’s my clear understanding that they like me at Lincoln because I am nice and a good person.

 Altogether I spend just about 40 hours a week at school and traveling across the Cuyahoga River to school. That is the equivalent in hours of a full-time job, so I think it’s obvious that school is a very important part of my life.

 One positive foster home was on the West Side of Cleveland. That period lasted about a year and began in the late fall of 2010 and ended in the late fall of 2011. [My foster caregiver], a woman of less than 40 years of age who works as a nursing assistant, was a powerful blessing in Malikah’s and my life.

“[She was our] our second mom,” a title she earned. Malikah and I got whatever we needed from her. She is bright and works in the health care field so she was also able to open doors to other resources that benefited us. The experience of living with there for a year also led Malikah and me to begin coming out of the protective shells we had developed over the difficult years living elsewhere.

I have learned to speak up and ask for what I need. That alone has made things much better. I am also hard at work at forgiving those who have hurt me. I have made definite progress at doing that. I have made progress in so many ways. Yet, the big burden, my genetic illness, continues and has a tremendous impact on my life. Despite that, I try to stay positive and live well, one day at a time.

 

Managing Anticipatory Grief

May 27, 2015

ThinkstockPhotos-482256089Many of us are aware that grief is a normal part of every loss we experience, but grief does not only appear after the loss.  Anticipatory grief is the form of grief that occurs when one is confronted with a chronic or life threatening illness or when one anticipates the death of a loved one (or oneself). Anticipatory grief does not substitute, or necessarily lessen, grief that follows death. It is not simply grief pushed ahead in time.

Anticipatory grief is not a way to complete your grief prior to the death of the individual. Rather, it is a response to losses of both the person who is ill as well as caregivers and others who are close to him or her. Each experiences anticipatory grief from their own unique frame of reference.

Many times when we think of a loss we think about the death of a person, but there are many other losses. These include tangible losses such as physical limitations and intangible losses such as the loss of hopes, dreams, dignity, motivation and many others. With life limiting and chronic illnesses, both the patient and the caregiver experience anticipatory grief. Anticipatory grief not only includes future losses but also past and present losses.

Tips on managing anticipatory grief:

  • Accept that anticipatory grief is normal. Acknowledge the loss.
  • Stay connected with a support system that you can trust and rely on. Talk to those who have experienced the same journey you are traveling.
  • Exercise, eat right, and get enough sleep.
  • Prioritize your life, attending to those things that need to be done and letting go of the rest.
  • Say the things you need to say and experience the things you need to experience.
  • Create memories while you can.

Remember there are no rules to grieving. Grief is a result of loving someone. Be kind to yourself and in doing so you will be better able to help others.

Job Opening: Gift Coordinator

May 19, 2015

GIFT COORDINATOR
Location: Cleveland, OH

Enters data and generates reports and donor acknowledgements.  Interacts with donors to answer questions and/or resolve problems.  Generates information from multiple National Obituary registries.  Maintains accurate donor/prospect records in Raiser’s Edge database.  Assists with special events.

Requirements:

High school diploma; Two to five years data entry experience; Good communication and telephone skills; Excellent people skills; Raiser’s Edge/donor software experience helpful.

Click here to apply.

Volunteer Opportunities

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About Hospice of the Western Reserve

Hospice of the Western Reserve provides palliative end-of-life care, caregiver support, and bereavement services throughout Northern Ohio.  In celebration of the individual worth of each life, we strive to relieve suffering, enhance comfort, promote quality of life, foster choice in end-of-life care and support effective grieving.

*Please do not submit resumes or any personal information in the comments section*

Hospice of the Western Reserve Receives National Recognition for High Family Satisfaction Scores

May 12, 2015

Hospice of the Western Reserve’s Mentor Teams have been named a 2015 Honors recipient by Deyta, LLC, an industry leader in health care data management. This award, which is based on caregivers’ survey responses, recognizes the high level of care and services provided to the hospice’s patients and their families.

Hospices are evaluated on 18 performance and satisfaction indicators, which include how well the patient’s pain, breathing and anxiety were controlled, the personal care provided by the hospice, if the family was kept informed, the effectiveness of spiritual and emotional support provided to the patient and family, and the training provided by the hospice to help the family participate in the care for their loved one.

The results are compared to the national average for each indicator, which is based on results from 1,700 other hospices and includes for-profit and non-profit agencies. This award reflects industry-benchmarked recognition of the hard work and exemplary performance that distinguish Hospice of the Western Reserve as a top national performer in end-of-life care.

“We are honored and humbled to receive this recognition based on survey responses from our patients’ families,” said Bill Finn, Chief Executive Officer. “We recognize that they are placing their trust in us during a most difficult and vulnerable time. Our teams take their mission very seriously and strive to honor the faith and confidence families place in us with respect and service excellence.”

About Hospice of the Western Reserve
Hospice of the Western Reserve is a nationally acclaimed non-profit agency providing comfort and emotional support to patients and their families. The agency provides palliative end-of-life care, caregiver support and bereavement services throughout the region, and cares for people in a variety of settings, including private residences, assisted living and retirement communities, nursing homes, at Ames Family Hospice House in Westlake and David Simpson Hospice House on Cleveland’s east side. For more information, visit hospicewr.org, or call 800.707.8922.

Job Opening: Assessment Nurse

May 5, 2015

 

ASSESSMENT NURSE
Location: Cleveland, OH

Provides an overview of hospice services within the home, hospital, or alternative home setting and facilitates the admissions process when appropriate. Coordinates implementation of an initial plan of care based on immediate needs of the patient/family unit.

RequirementsLicensed RN in State of Ohio; BSN preferred; Experience preferred in pain and symptom management; oncology; public health; or medical/surgical background.

Click here to apply.

Volunteer Opportunities

Back to job listings

 

About Hospice of the Western Reserve

Hospice of the Western Reserve provides palliative end-of-life care, caregiver support, and bereavement services throughout Northern Ohio.  In celebration of the individual worth of each life, we strive to relieve suffering, enhance comfort, promote quality of life, foster choice in end-of-life care and support effective grieving.

Job Opening: Spiritual Care Coordinator

April 29, 2015

 

SPIRITUAL CARE COORDINATOR
Location: Cleveland, OH

Provide direct spiritual care for patients and families; clinically supervise spiritual care volunteers as assigned; develop and assist memorial services for patients.

Requirements:

Master of Divinity preferred or graduation from an accredited four-year college or university with major course work in a related field, and experience in counseling and/or spiritual care, preferably in a hospice or health care environment; Four completed units of Clinical Pastoral Education (CPE) or equivalent clinical training and experience; Considerable experience working with the terminally ill in a health care environment, program development, coordination of volunteers and grief counseling preferred.

Click here to apply.

Volunteer Opportunities

Back to job listings

 

About Hospice of the Western Reserve

Hospice of the Western Reserve provides palliative end-of-life care, caregiver support, and bereavement services throughout Northern Ohio.  In celebration of the individual worth of each life, we strive to relieve suffering, enhance comfort, promote quality of life, foster choice in end-of-life care and support effective grieving.

*Please do not submit resumes or any personal information in the comments section*

Job Opening: Administrative Assistant

April 29, 2015

 

ADMINISTRATIVE ASSISTANT
Location: Cleveland, OH

Provides routine and confidential administrative/clerical assistance to the Chief Financial Officer, Director of Financial Services and Financial Services Team Leaders as assigned. Under general direction, performs professional and technical administrative duties and responsibilities in credentialing, records management, procurement, contracting and travel.

Requirements:

Five (5) years’ experience in administrative and general office functions; Associate’s Degree preferred in business management; Proficient in word processing, database and spreadsheet software packages.

Click here to apply.

Volunteer Opportunities

Back to job listings

 

About Hospice of the Western Reserve

Hospice of the Western Reserve provides palliative end-of-life care, caregiver support, and bereavement services throughout Northern Ohio.  In celebration of the individual worth of each life, we strive to relieve suffering, enhance comfort, promote quality of life, foster choice in end-of-life care and support effective grieving.

*Please do not submit resumes or any personal information in the comments section*

Five Tips for Dating After the Death of a Partner or Spouse

April 27, 2015

The depth of grief after the death of a partner or spouse can be overwhelming. There is a void – a hole in your heart that your beloved once filled and the aloneness is vast.  Just the idea of beginning a new  relationship can be scary.

Each person grieves in his or her own way and not everyone is interested in dating or resuming a social life after the death partner or spouse. However, you may find that starting a relationship and finding this aspect of meaning in life can be part of the healing process.

How will you know when you are ready to date? Here are some things to consider:

  1. Time – While there is no calendar for grief, you want to make sure that enough time has passed for you to work through the tasks of grief. Some people need more time to grieve than others and some want to date fairly soon into their grief.  There is no right or wrong, good or bad way to grieve.
  2. It is important to experience and process the feelings of grief and loss. Moving into a relationship too soon may be a way of avoiding or escaping this crucial task of grief.  Also, many people feel guilty when starting new relationships. If the guilty feelings are too strong, it may be an indication of moving too quickly.
  3. Have you adjusted to your new role? Can you take care of yourself?  Have you assumed all the roles around the house that you used to share with your partner or spouse?  You want to be careful that  you are not looking for a “caregiver ”or replacement or someone to take out the garbage or cook a good meal. Think about what you miss about your partner or spouse.
  4. Have you gone through your partner’s possessions? Many people quickly remove any and everything that reminds them of their beloved.  Some people hang on to belongings for a very long time.  Before you begin dating, sort through your loved one’s possessions.  Decide what you want to donate, toss, store or leave on display. This can also be very healing.
  5. Inform your children, family and friends. This is not a request for permission or a blessing, but letting them know is a courtesy. No one wants to be surprised when you show up with your date at an event. Some may be upset at first, but talk to them. Let them that you wish to start dating again. They want you to be happy.  Reassure them that you will be safe and remind that no one will ever replace the person who died.

The death of your partner or spouse has become part of your life story and who you are.  Your relationship with the deceased does not end, but a new relationship is created based on memory, spirit and love.   Meeting someone new and developing a connection creates new memories and meaning.

Diane Snyder Cowan, Hospice of the Western Reserve ©2015

 

Mother’s Day can be Painful for Those Grieving

April 23, 2015

Grief Counselors Offer Tips for Those Coping with a Loss

Cleveland, Ohio (April 23, 2015) — Mother’s Day, May 10, is usually a time of celebration. But for some, the time can be filled with pain and sorrow. Not everyone will be buying flowers or going to brunch with the family. For those who have experienced the recent death of a mother, are struggling with infertility, coping with the loss of an infant or child, or who have difficult relationships with their mothers, here are some suggestions from the grief counselors at the Elisabeth Severance Prentiss Bereavement Center, Hospice of the Western Reserve:

For adults grieving the loss of a mother

  • Don’t try to minimize the loss. Acknowledge your loss and the difficulty this day brings.
  • Do something positive in memory of your mother or engage in an activity that will connect you to her. Complete a ritual such as lighting a candle, visiting the gravesite, planting flowers in her memory or making her favorite recipe..
  • Buy a Mother’s Day card and write the sentiments you would like to express.                                                                                       mother-daughter-walking

For children grieving their mother                                                                                 

  • Let them know it’s okay to miss mom and cry if they need to.
  • Read them stories and books mom used to read.
  • Have them make a Mother’s Day card or write a letter.
  • Reminisce together by looking at photo albums and listening to music.
  • Engage in activities that mom used to like to do.
  • Create memories of mom (make a scrapbook, plant a tree, organize a fundraiser).
  • Encourage creative and active play.

For women grieving their children

  • Give yourself permission to grieve. Cry when you need to cry.
  • Tell and re-tell the story. Use your child’s name.
  • Reach out to others. Seek out a grief counselor or a support group.
  • Consider starting a journal intended for your eyes only to express your feelings.
  • Celebrate your child by giving a donation to a local scholarship fund or children’s organization.

For grief support assistance

The Elisabeth Severance Prentiss Bereavement Center, a community-based grief support program, provides services throughout Northern Ohio. Programs are available for anyone who has experienced a loss due to death, whether or not Hospice of the Western Reserve was involved. Support groups and programming for children and adults, art therapy programs and wellness initiatives, many of which are free, are among the many options. To learn more, visit hospicewr.org/grief-loss/support groups, or call 216.486.6838.

6-Year-Old Donates Presents to Help Others Create Art Legacies

April 20, 2015

Best3The room holds so many happy memories.

Patients and families who walk into the art therapy room at Hospice of the Western Reserve’s David Simpson Hospice House quickly realize the colors and textures that fill the room are there to create.

Create artwork. Create memories. Create a tangible item that will forever bond them to their loved one.

For three generations of one family, it was the time spent in that room during the summer of 2014 that helped them enjoy precious last moments together and then learn to accept the death of one of the family members: a husband, stepfather and grandfather.

“We came here with my mom’s husband, Tom (May),” Jackie Rudar said. “We came to the art therapy room frequently. The girls spent a good part of their summer in this room. Instead of going outside to play, they wanted to come in here.”

It was in that room they created dozens of items. Painted boxes, pictures and created handprint art of the hands of Rudar’s daughters, Katherine, 6, and Elise, 3. The time spent in that room from May’s admission in June to his death in August, was a critical part of the experience.

May had begun receiving care from Hospice of the Western Reserve treatment when he was a patient at Villaview Health Care. Then he transferred to the David Simpson Hospice House to live out his final days.

“I didn’t know much about Hospice,” Rudar said. “We knew Tom was in great hands, but then we came to find out we were all in these wonderful hands.

“This was a huge part of our season. Art therapy in particular was just huge. We would see Tom paint. We would help finish his projects. The last day we were here, in August, we were in this room.”

“I always knew this room and these ladies were part of the family’s acceptance,” Rudar said. “We wanted to say ‘thank you,’ but at the time we didn’t know how to.”

Saying thanks and giving back

Six months later it became clear when Katherine’s sixth birthday was arriving.art therapy gifts1

“We talked about things we needed, things we wanted and things other people needed and wanted,” Rudar said. “We started talking about hospice and what we could do.”

When it was suggested that Katherine ask her birthday party guests to bring art supplies for hospice in lieu of gifts, the little girl quickly agreed. Invitations requesting art supplies were made and sent to 23 of her kindergarten classmates. Included in each invitation was a copy of Hospice of the Western Reserve’s
“wish list” for the art therapy room.

“We began telling the families about our Hospice of the Western Reserve experience,” Rudar said. “Some knew about hospice; some didn’t know this magical place existed.”

All 23 classmates, along with siblings and parents, came the party, bringing along bag after bag of art supplies.

On March 18, Rudar, her mother, Leanne May, and the girls brought the donations to the David Simpson Hospice House. Arriving at the house toting a full luggage rack of supplies, they paused in the hallway to remember details of their loved one’s stay. Rudar was struck by the number of visitors’ vehicles in the parking lot, understanding that those individuals were likely going through the same thing she went through last year.

“I see all these cars here and think they could be using some of the supplies for the same reason I needed them last year,” she said, wiping her eyes.

Arriving at the art therapy room brought more tears, especially after a quick reunion with art therapist Becky Kiely, who herself shedding a few tears.

The cart full of art supplies was especially appreciated.

“I just started sobbing when they called and asked what we needed” Kiely said. “It’s overwhelming. You don’t always see the outcome of your work. And to be recognized like this, is tremendous and heartwarming.”

For Katherine, donating items instead of gifts gave her a clear sense of accomplishment as she emptied the bags and handed item after item to Kiely.

“It makes me happy,” she said, while taking the opportunity to paint a box with her sister.

The supplies will go toward healing and acceptance for other families, just as they had for May’s family.

“Here in thisDSC_0643 room we’re able to share a space that provides trust for families,” Kiely said. “Not only for Tom’s wife and stepdaughter, but his granddaughters as well. We created this space for everybody.”

The family agreed.

“It made the best of a hard situation,” May said, adding that giving back was especially important. “It’s good for Tom’s memory, it’s good for hospice,” she said.

The items created in those two months are now in a special case May bought for her house, just to display the artwork.

“What we do here provides memories, but also that tangible item,” Kiely said. “It’s a connection they’ll always have.”