Patient Stories: An Inside Look at Home Health & Hospice Care

Compassion At Its Finest

As you walk through the front doors to the beautiful house on Naticook Road, the air fills with a warm chocolate smell from cookies baking. The paint on the wall comes to life with the soft illumination of the various lamps scattered around the building. The temperature changes from cool to warm as you follow the carpet further into the house. The sound of a piano draws your attention into the living room, and tranquility sets in. The house seems to be comfortable, quaint, and engaging, just like a home.

For ten year old Lily Fulford the house was sweet and peaceful, but it wasn’t until she saw the generous care being provided to her grandmother, that she knew it was a truly special house. Catherine, “Kitty” or “Kiki,” Hammond was at the Community Hospice House in October of 2013. In August of that year, Lily had made a lap quilt to surround her grandmother with love and to help keep her warm. “That quilt was very special to my mother and she brought it with her to your center,” Mrs. Hammond’s Daughter, Lee Hammond-Fulford, says. “It gave her something created with love to hold onto, buttons and ties to occupy her hands when she was nervous and something bright to lay upon her bed.”

Lily witnessed the appreciation her grandmother had for the quilt. Seeing this firsthand lead Lily to think of the appreciation other patients in the house would have for the same thing. The result, Lily made another quilt for the house. “It’s meant to be passed along and shared with others; it’s a way to help Lily with her grieving by giving something special from her heart.” Although it is an unexpected gift presented to the Community Hospice House, it is an incredibly heartfelt gift. “This is a great way for us to say ‘thank you for the help and generosity of our family.’ It is rare families get that chance,” Lee explained over the phone. It is a gift knitted with true love, appreciation, and most of all, the essence of life.

The First Week – Micah’s Story

Back Story:
My pregnancy was normal. I ate well and practiced yoga throughout. My ultrasounds were normal. There were no concerns whatsoever. I gave birth naturally to my baby girl, Micah Simone. She weighed 7lbs. 3 oz. and came with a full head of curly, brown hair. We were over the moon!

In the days that followed, Micah has difficulty maintaining her body temperature and blood sugar on her own. She seemed to be improving to the point where Micah’s father and I were confident we were going home on Thursday. Suddenly, on Wednesday evening, we were notified that we needed to decide where to bus Micah as St. Joseph’s could not handle her situation. We were stunned and confused. We thought she was doing better. The staff could not convey what exactly their concern was – simply that she needed to be at a hospital with more neonatal expertise. Since they stated it was not an emergency, we opted for The Elliot Hospital as they have a Level 3 NICU and they were local to our home. I watched my baby girl get loaded into a small plastic box referred to as an isolette, strapped onto a stretcher and loaded into an ambulance.

We arrived at the Elliot around 10:00pm that Wednesday night. Initially, the staff stated they were going to run some tests and observe her for 24 hrs. to see if she was experiencing seizures (EEG). Seizures?! Again, her father and I were in complete shock. Everything was NORMAL! Micah’s doctor was incredible. She communicated effectively but also sympathized with us as parents. She explained the tests they ran identified bleeding on Micah’s brain. WHAT?! They then said they were communicating with Neurologists at Boston Children’s and explained they did not have the expertise to treat Micah. We needed to be bused (again) to Children’s. We were scared out of our minds and exhausted. I had not slept since before I was in labor and her father was in no condition to drive to Boston. He went home to rest for a few hours and met us later in Boston. There was no question I was riding down with Micah. For a second time in less than 8hrs, I watched my baby girl get loaded into an isolette and back  into another ambulance.

We arrived at Children’s around 6:00am. I will never forget the moment they opened the doors to the NICU. I walked into a massive room filled with rows and rows of babies strapped up to all kinds of tubes and machines. Part of me felt even more scared and overwhelmed but a small part of me felt relieved that my baby girl was not alone. The hours that followed were a blur. They took her away from me to run more tests. Later on I met with doctors from four different teams who explained why they were there and what they observed. Talk about being overwhelmed. There were a lot of unknowns. They were trying to figure out her diagnosis and what caused them to begin with. The next hours/days were immensely stressful as you can imagine: more and more tests, seeing my baby hooked up to machines, the loud beeps and blinking lights. My number one priority was to try to get her as much breast milk as possible whether directly or via a bottle to try to help her body heal, to help get her through this serious trauma. In my mind, this was all I could do aside from pray and hold her. The Children’s team was incredible. I honestly think they are trained to treat the parents as much as the children. They made this experience bearable. Micah was admitted for one full week. There were still a lot of unknowns but insurance would not allow Micah to stay any longer as she was stable. The staff allowed me to stay overnight in a private room with her the night before she was discharged so I could get accustomed to taking care of my first baby – a baby who underwent significant trauma.

Coming Home (Back to Emily):
The Children’s social worker had advices Micah was able to have a visiting nurse come to our home to check on her. We had the good fortune to meet Emily Sindoni. Emily has found her calling. She truly was meant to be a nurse. Not only did she provide the best possible care to my daughter by treating her like she was her own child, she helped reinforce I was doing the right things as a mother. You see, I was the youngest in my family and in my neighborhood growing up. Micah is my first child. Her diaper was the first diaper I had ever changed. I was severely sleep-deprived, worried about my little girl as there were still many unknowns with her condition and I was second-guessing everything I was doing. Emily was a Godsend. She assisted me with giving Micah baths. She offered suggestions with different styles of breastfeeding. Emily helped me read Micah’s cues. The doctors had told us the worst case scenarios of her condition and had stated she would be delayed at minimum. She reassured me that Micah’s actions/behaviors were on par with that of other babies who had not undergone such trauma. Emily  provided a level of comfort and support I will never forget. She was a source of knowledge and empowerment. I am better mother for it. Today, Micah continues to progress. We have a lot of work to do with her as she is slightly delayed, but she is happy. And that is all that matters to us. The smiles and laughter of my little girl make everything that we went through worth it. Emily had a hand in Micah’s progression and in my confidence as a new mom. She truly is an asset on your team. I wish every mom had the opportunity to work with Emily.

Bereaved Teen is Paying it Forward

Home Health & Hospice Care (HHHC) strives to provide excellence in care through all seasons of a patient’s life journey. This is not limited to the elderly, the sick or the dying, but extends to at home care for pediatrics, respite care for caregivers, and bereavement support for the grieving, whether those grieving are six, sixteen or sixty.

Under the best circumstances, the teen years are a time of tumultuous change. Adolescents experience many changes in their body image, behaviors, feelings and relationships within their family dynamics. When you add the death of a mother, father or other significant person in their life, those teen years become drastically more complex.

In fall of 2008 life took an unexpected turn for fourteen year old freshman Chris Anderson, when his father, hero, baseball coach and best friend, became ill.  HHHC provided at home hospice care for Chris’s father for ten days in January of 2009, and then his father requested to be moved to the Community Hospice House. Chris’s father was only at the Hospice House for three hours before he died with his family by his side. Chris remembers his father’s final days in great detail, particularly when his father said to him “you’re the man of the house now.” Chris embraced his father’s words and the responsibilities that would follow.  Chris was the older brother of two sisters, a star athlete, honor student and did his best to move forward into this new reality, but he was grieving.  When his mother mentioned a support group for teens the fall following his dad’s death, Chris decided to give it a try.

Chris joined the newly formed Teen Topics grief support group provided by HHHC in the fall of 2009. Teen Topics brings bereaved teens together from many communities in southern New Hampshire. Each session couples a topic related to grief with an activity. Bereaved teens often feel isolated in their school peer groups as their loss has put them in a different place. The group is a safe outlet for teens to meet with others who understand what they are experiencing. Chris has been a consistent participant for three years now saying, “I always feel better after leaving the group.” When asked, Chris said that each session is helpful but for him the most meaningful activities have been the art projects, and specifically a collage booklet that he made about his father.  Chris has also played a key role in encouraging more physical activities for some of the grief sessions, including a low ropes course and hiking. Facilitators Eleanor Owen and Tom Knapp praise Chris’s excellent listening skills and humble leadership.

The most substantial contribution that Chris has made to the group involves preparing his father’s spaghetti sauce recipe for younger bereaved children.  For the last two years, members of the teen group have volunteered to prepare a pasta dinner for the families of Good Grief, the program serving elementary and middle school children. When the teens decided to reach out to the younger children in this way, Chris volunteered to prepare his father’s spaghetti sauce. Some of his fondest memories of his father were standing by his side in the kitchen learning the secrets to his spaghetti sauce recipe.  Members of Teen Topics work together with Chris as lead chef to prepare the special evening. For Chris the night is not only a way to commemorate his father, but also a way to provide hope for the families of the Good Grief program. Chris feels it is important for the parents to see that children who go through difficult times are still able to thrive and even to reach out to others.  Chris has helped to create one of the bereavement division’s most meaningful and celebrated events. This May Chris prepared his fifth batch of his father’s spaghetti sauce for the families of Good Grief.

In spite of the life altering loss that began his high school career, Chris will graduate in June with a notable record.  He has been a National Honor Society member, captain of his football team, state wrestling champ, and influential member of his teen grief group.  Chris will be attending St. Anselm College in the fall studying forensic science and continuing to play sports. For the first time since his father’s death, Chris also tried out for baseball this spring, a sport once coached by his father. Chris has made such a positive impact on Teen Topics that he has been asked to consider training to become a volunteer facilitator for future sessions.

HHHC has been a partner for Chris and his family in their life’s journey. Although the people and the services of HHHC have certainly made an impact on Chris and his family, Chris has made an impact on HHHC by honoring his father’s memory and reaching out to others while doing so. Grief is a lifelong journey, and there is no need to travel the road alone.

Partners in Life’s Journey

The Lafferty family and Home Health & Hospice Care have shared a partnership for over a decade. Home Health & Hospice Care (HHHC) began their journey with the Lafferty’s to assist in meeting the needs of their sons, Pete and Joe, who had both been diagnosed with Duchenne Muscular Dystrophy (DMD) when they were toddlers.

From the time of diagnosis their parents, Tim and Joan, educated themselves and the boys about DMD. The family discussed all decisions regarding treatment options together as it was important for the family to have open, honest communication. “Our desire was to give them the best life we possibly could despite the diagnosis,” explained Tim.  Although Joan and Tim grieved their sons’ losses in function, the boys through their behaviors, helped their parent’s accept the losses and to live each day to the fullest and focus on each moment. For example, when Pete and Joe needed motorized wheel chairs Tim and Joan were saddened at first as this symbolized another decline in the boys’ health status. However, their attitudes changed as the boys laughed, racing each other on the front lawn.

Beginning in 1995, the family accessed the services from HHHC’s home care division consisting of home health aid support for personal care. Eventually as the boys’ diseases progressed they lost certain functions, requiring additional services such as physical and occupational therapies to maintain their independence. HHHC’s multi-disciplinary approach mirrored the Lafferty’s approach and goals. A partnership had begun, sharing knowledge and assistance to meet the goals for both quality of care and quality of life.

In 2004 the youngest son, Joe, was hospitalized due to a cardiac crisis and it appeared as if he might not make it. Hospice was recommended and although HHHC has a hospice house, it was the Lafferty’s goal to keep Joe at home. True to form, Joe once again rallied and although compromised, he continued to live. Hospice services in the home were implemented as needed. As part of the Hospice team approach, a social worker was brought in to work with Joe, and ultimately, was able to work with the whole family. “Hospice was a great thing for us,” says Joan, “we always had an opportunity to share what was on our heart.” Although the family had a strong faith and support network of family and friends, Tim and Joan met with the hospice social worker weekly to process their grief. Beyond HHHC’s medical professionals, a team of volunteers were assigned to assist the Lafferty’s. Pete and Joe received pet therapy visits from cats and dogs, their favorite being a Pomeranian named “Teddy.” A volunteer also began visiting with the boys twice a week providing respite for Tim and Joan. During this time they would take care of their own personal needs, run errands or simply take a quiet walk.

One of Joe’s goals was to live until his twentieth birthday. He celebrated that birthday in September 2007. Joe was in the final stages of his disease at that time. With hospice care he remained at home until his death two months later. On November 18, 2007, Joe died peacefully in his own bed, with his parents by his side. Tim and Joan explained that the last few days were intensely emotional, however Joe was comfortable and at peace, physically, emotionally and spiritually.

The Lafferty family and Home Health & Hospice Care have continued their partnership in a unique way.  While Pete still receives the assistance of home health aides daily and twice weekly visits from a volunteer, the Lafferty’s have been giving back by sharing the story of their journey with new volunteers and staff in training at the agency. Their story and gratitude is inspirational and helps to clarify how staff support and a volunteer’s presence make a difference. Regarding a volunteer that has been with the Lafferty’s for five years Pete says, “she is not a volunteer, she has become a life long friend, full of encouragement.”