The Need for Respite & End-of-Life Care
Click to "Experience a Day" in the life of a family.A Diagnosis
A child’s diagnosis of a life-threatening condition is devastating. The life imagined: a long, bright future and stresses of extra-curricular activities turns into an emotional roller coaster of gut wrenching decisions relating to the quality of life, care and wellness of the child.
Traumatic episodes including trips to the hospital as well as countless stressors on the child, siblings and entire family and support system ensue. The 24-hour care cycle becomes unrelenting. All-consuming medical needs become the focus of a life never imagined or dreamt, but is now the reality. Balancing priorities often takes a toll on family relationships, marriages, jobs and other obligations. Adjustments and compromises are made, but are wrapped around decisions that often cause heartache and emotional strain.
The Toll on Families
Twenty-five years ago a child with a life-threatening condition may not have been taken home from the hospital following such a diagnosis. The options for care and treatment were not the same. Today, we have advanced medical care for children with life-threatening conditions, and the final care decisions are often left up to the family, along with the extraordinary costs. This responsibility can be devastating for many families. Families who otherwise may have had two incomes may face the decision to quit a job to be home to provide the 24-hour care that is necessary.
A significantly decreased family income holds many challenges that affect the ability to pay for essential care, to help care for other children, pay for assistance needed to balance the typical demands of having a family, such as, cooking, cleaning, and extracurricular activities, and the opportunity to spend quality time as a family or to take an emotional break. There are thousands of families in Minnesota that could use Crescent Cove's support and commitment in the midst of adversity and the realization that their dreams for their child’s future will remain just that.
The Model of Crescent Cove
Bridging the Gap Between Home and Hospital
Minnesota is recognized for its nationally renowned hospitals and programs for children. Hospitals are necessary for urgent, acute care and treatments, but not always ideal or necessary for respite or end-of-life care unless the child is in need of, or desiring, hospital-level care. Even though some hospitals may offer a larger room to accommodate a child who is dying and his/her family, they are typically near other hospital rooms where children are receiving acute care and treatment.
Children’s hospital providers in the Twin Cities all agree that there is a great need for a pediatric hospice and respite care home. Crescent Cove provides pediatric palliative care (pain and symptom control) during respite stays and at the end-of-life, after treatments have been exhausted. In doing so, we collaborate with the child’s primary provider to ensure the best care possible.
