Quick Facts

Family Caregiving: A Personal Glimpse

January, 2013

The holiday season is a time for reflection. It can be a difficult season for those who have lost someone dear to them or know that this will be the last holiday with a seriously ill loved one. For this last “quick fact” of the year, I would like to reflect on the incredible work of families.

This past year I took off my nurse practitioner clinician hat and embraced the role of daughter helping to care for my father in the final stages of Lewy Body disease, a type of dementia. Palliative care has been the constant throughout his long illness. By stepping into a more personal experience of palliative care, my conviction was reinforced that palliative care meets an individual and family’s unique beliefs, values and needs.

My shift from professional to family caregiver this past year has provided great insight into the family experience. It hit home that families need information and caring guidance regardless of the disease type and regardless of what they already know.

Palliative care has no agenda. The heart of this type of care is a team of professionals who get to know the patients, their loved ones and caregivers. Understanding patients and families ensures that the treatments match their goals, not the goals of health team or health plan.

When my father was first diagnosed, the neurologist gave us a stern warning: This will either tear you apart or bring you closer together as a family. See if you can do the latter, but get help now.” We were lucky in a sense. My father, a retired surgeon and pioneer in medical ethics, spoke frequently about serious illness and “what ifs” when we were growing up. So when we were faced with the reality of his condition, these kinds of discussions were not new to us.

Initially, my father took the lead, talking about the likely course of the disease and his wishes for medical care. His highest priority was to maintain both mental and physical function as long as possible. He wanted to remain at home, if possible, and minimize hospitalizations, always keeping my mother’s comfort level in mind.

Dad has been unable to walk, move, feed or care for himself for nearly four years now.  We are grateful for his initial guidance and for the guidance of geriatric and palliative care specialists we sought early in his illness and along the way. They helped transition Dad to hospice care as the disease progressed, enabling him to stay at home. Amazingly, he has not been back to a hospital or had to get to a doctor’s office in over three years. They come to us. And he is comfortable. So is my 85-year-old mother who takes loving care of him. His 7 adult children, in-laws and grandchildren (and his beloved “grandpets”) have all been cared for along with him.

This Thanksgiving we could not get Dad out of bed to sit at the table. He’s just too weak. So we ate around his bed. We talked about Thanksgivings past, with memories of sitting around the fire with all the grandparents, long walks and family time. My brother, a Catholic Priest, said Mass at Dad’s bedside and read prayers; my father was quietly attentive. His faith is the most important thing in his life and gives him peace. Mom cooked her famous turnips and Dad enjoyed them. While his appetite is poor, even just a taste made him smile. He is still aware at times — and those times are precious.

Palliative care matches treatments to patient values, beliefs and life goals. Not only have I provided this type of care to others – now I’ve lived it. It can be done. Dad led us in this from the beginning and we have taken his lead and learned much along the way. As we continue to gather together this holiday season and anticipate his death, I can honestly say to him, to my mother, to my siblings, and yes, even to me – job well done. I am so thankful to the palliative care providers who have been with us since his diagnosis, and who continue to guide us still.

© 2012 All rights reserved.

Planning For Serious Illness. Advocating For Loved Ones.

November, 2012

We plan for so many things in life: childbirth, school, weddings, retirement – even vacations! Yet studies show that people shy away from planning for serious illness.

When serious illness strikes, life can change in an instant. Families who have had conversations about serious illness with their loved ones, and have organized important documents and health information, find that a few easy steps can be a tremendous help. Use the following as a check list. (more…)

Planning For Serious Illness. Advocating
For Loved Ones.

November, 2012

We plan for so many things in life: childbirth, school, weddings, retirement – even vacations! Yet studies show that people shy away from planning for serious illness.

When serious illness strikes, life can change in an instant. Families who have had conversations about serious illness with their loved ones, and have organized important documents and health information, find that a few easy steps can be a tremendous help. Use the following as a check list. (more…)

Tips for Tackling Caregiving

April, 2012

Did you know that over 25% of the US population (more than 65 million people) provides care for a chronically ill, disabled or aged family member or friend during any given year? The number of caregivers is rising as the population is aging. So what can the family caregiver do? (more…)

What Is Palliative Care?

January, 2012

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. It focuses on providing patients with relief from the symptoms, pain, and stresses of a serious illness-whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment. (more…)

Getting CT Scans You Need and Avoiding Those You Don’t

July, 2011

In recent decades many improvements have been made in diagnostic imaging with tests such as CT scans.  They help doctors diagnose serious disease and enable you to receive appropriate treatment.  You can partner with your doctor to ensure you receive only the tests that will benefit you. (more…)

Meeting with the ICU Team: A Guide for Families

April, 2011

The Intensive Care Unit can be an intimidating place for families and loved ones. If your loved one is in the ICU, ask for a family meeting. The team will meet with your family to discuss the condition and care of your loved one. (more…)

Benefitting from Support Groups When You’re Facing Breast Cancer

January, 2011

The diagnosis of breast cancer is a major life-changing event. Upon hearing the words “cancer” a patient as well their loved ones are thrown into a whirlwind of emotions ranging from fear, to anger, to denial, to overwhelming sadness. It is difficult enough to deal with the physical challenges of breast cancer and treatment, but the emotional impact can be an even greater burden. Patients and loved ones need a “safe place” where they can share these feelings with other people who truly understand. In addition to treating the pain and symptoms of breast cancer, palliative care also treats the stress of this serious illness. Joining a support group is often recommended. Breast cancer support groups are designed to provide a confidential atmosphere where cancer patients can share these stresses with others experiencing similar situations. (more…)