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Care, Support & ALS
If you visit Pam and Steve’s quiet home in the historic Philadelphia neighborhood of Chestnut Hill, you will find a loving couple facing the most monumental challenge of their life together. Steve has Amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig’s Disease. Steve was diagnosed with ALS just before the couple’s second wedding anniversary. Pam is now her husband’s primary caregiver.
ALS is a progressive neurodegenerative disease that attacks the nerve cells in the brain and spinal cord, taking away the ability to control muscle movement. Patients in the later stages become totally paralyzed and eventually die. Being a caretaker to someone afflicted with ALS is a daunting task; but with the help of Holy Redeemer Hospice, Pam doesn’t have to face this journey alone.
Hospice & Caregiver Respite
Many people think of hospice and assume the care is focused solely on the person with a life-limiting illness. While the interdisciplinary team does attend primarily to the patient’s needs, they also go a step further, providing support to the family caregiver(s). This may include counseling, therapeutic stress-reducing treatments, help from volunteers, or even a level of care dubbed “respite,” in which the hospice patient is temporarily cared for at an in-patient facility.
Being a caregiver to a loved one with a serious illness is a 24/7 responsibility. But it is important to remember that the well-being of the caregiver is essential to the quality of life of the patient. The term “caregiver burnout” refers to a situation in which the caregiver has become so overwhelmed/exhausted that he/she is unable to provide the care a terminally ill patient requires. The entire family can suffer.
Supporting the Caregiver
Pam is a perfect example of a caregiver facing a daunting challenge. Steve’s condition keeps her busy at all times. But, with the help of hospice, she is able to manage.
Steve’s hospice team visits their home every weekday morning. Their nurse and home health aides attend to nutrition, personal hygiene, physical therapy, and symptom management. Hospice nurse Valerie Hartman provides reflexology treatments on Pam’s feet. It relieves stress, and is also a time for Pam to express her feelings and frustrations in a safe setting.
Pam affectionately refers to her reflexology treatments as a “loving touch” because they provide her with the essential physical contact that all people need.
“I realized that when I returned from respite, I had fresh energy as a wife, not only as a caregiver, to better love Steve and to keep going.” Pam says.
The Future for Pam & Steve
Despite Steve’s devastating diagnosis, the couple has managed to stay strong and positive, maintaining relationships with family and friends. You can still catch them on Forbidden Drive in Fairmount Park, their favorite peaceful getaway, with Pam pushing Steve in a wheelchair along a path he used to run. They are finding those precious moments of life, and hospice plays a hand.
Steve West died on January 3, 2015. He was 63.
Roberto Carmona is a film producer/director based in the Washington DC metropolitan area. He is the founder of his own production company, Tag Cinema. To learn more about Roberto and Tag Cinema, please visit: www.tagcinema.com.
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