Tuesday, November 25, 2008

Aging gracefully: Connection among caregiver, hospice, Alzheimer's big

by Dotty St. Amand

November is National Alzheimer's Awareness Month, National Family Caregivers Month, and National Hospice Month. While each designation focuses on an important issue, the connection between the three is significant.

Alzheimer's disease is a progressive illness for which there is no cure. In spite of treatments that help people remain more independent and in the earlier stages for a longer time, the reality remains that we cannot stop the disease course. The person will gradually progress through the early and middle to the late stages of Alzheimer's disease.

Once a person is experiencing middle and then late stages of Alzheimer's disease, he will be dependent on a caregiver for daily care and assistance. In most cases, that caregiver is a family member.

Finally, the connection between the person with Alzheimer's, the family caregiver and hospice evolves as the person progresses to the late stage of the disease, which can last for several years during which the person requires total care.

In late, or end stage Alzheimer's, the person is not able to communicate verbally, doesn't recognize people including family members, cannot move, is incontinent, has trouble swallowing and experiences decline in overall physical health. The overall decline results in frailty that makes it difficult for the body to fight complications such as pneumonia, infection and coronary arrest.

As scary as that sounds to caregivers who are now facing early or middle stages, gaining knowledge and preparing to address these challenges is critical. Never is it so important for the family to rally around the person and advocate for the best possible care for the final days and years of the person's life.

While the person is no longer able to verbally communicate basic needs and feelings, non-verbal cues are critical. Caregivers can help address concerns by paying close attention to signs that the family member's condition has changed. Look for clues that the person may be experiencing pain - grimacing, moans and facial expressions can be telling.

Focus on the person's body position at bed rest. If his arms and legs are tightly curled in an apparently stressed manner, ask yourself if this could be a signal of pain. Family caregivers are the best source of information for the hospice and nursing home staff. Help them understand the nature of your family member's personality and clues that may be signals of distress for him.

Ask for hospice intervention earlier rather than later. Hospice offers palliative care that focuses on providing comfort and symptom relief without aggressive medical treatment in the end stages. Often caregivers do not realize that hospice provides care for end stage dementia.

In our community, caregivers have an advantage with the availability of services offered by Hope Hospice. While caregivers may think hospice is only for the person's final days, the reality is approximately 20 percent of people on Hope Hospice care receive services for over one year. It is common for persons with Alzheimer's disease to receive hospice services for more than 12 months.

Monday, November 10, 2008

Hope Hospice helps make wishes come true

Originally published in the Fort-Myers News Press
by Francesca Donlan

There is always hope.

That’s why the staff and volunteers at Hope hatched a plan to make each moment special for those in their care.

Everyone who is in Hope’s care has a special wish that gives them hope, said president and CEO Samira Beckwith.

They try and grant those wishes, she said.

Mckenna Smith, a 7-year-old in Hope’s program for chronically ill children, wanted to do only one thing last summer. She wanted to go to the Sun Splash Family Waterpark in Cape Coral.

Sun Splash made it a day to remember, said her father, Justin Smith.

The staff gave all of her friends and family free admissions, lunch and snacks.

“That brightened her summer,” Jason said. “She couldn’t do a lot this summer, and that helped her a lot.”

Mckenna spends most of her life on physical restrictions because of tumors that continue to grow back after they have been removed.

But on that summer day at Sun Splash, no one knew how sick she was.

“She’s a happy, happy child,” Jason said. “But she can’t do soccer or softball or ballet. But she swims like a fish. Everyone there treated her like an angel.”

Doctors were worried about Mia Terranova, 2, who faced heart surgery. Her mother, Amy Hoogstraal, didn’t know if her daughter would survive the operation.

One of Hope’s art therapists made prints of Mia’s tiny feet as a lasting keepsake for the mother, with framing donated by Cape Coral Art & Frame. Wal-Mart store No. 987 in Fort Myers provided toys, story books and other items to help the mother and baby through the long recovery period.

Mia sailed through the operation and endured more than a month in the hospital.

“She’s doing absolutely wonderful,” Amy said. “She was born missing half of her heart, but the prognosis is looking really good.”

The framed prints and the abundance of art materials helped Mia and Amy.

“She was fairly isolated during her recovery,” Amy said. “It meant a lot to us.”

Older patients have wishes, too.

Widner Dolly, 63, mentioned that he would really like to go fishing but had no gear. Bass Pro Shops in Fort Myers fulfilled his Hopeful Wish.

The community plays an important part in Hopeful Wishes, Beckwith said.

“These are all gifts and gestures that will be cherished for a lifetime,” she said.

Thursday, November 6, 2008

Thanksgiving and Hope Hospice Bring Attention to Good Life

At Thanksgiving, many Americans express their gratitude for the opportunity to live a good life. Even people who are appropriate for hospice care can share that opportunity.

Recently a little child in our care told us that if he could do just one thing, it would be to spend a day at a theme park with his family. For many, that would be relatively easy. For others, including this child’s family, it would be a major undertaking, financially and physically. We were able to make it happen, and for him, it was no ordinary day at the park. It was a very special, one-time-only experience. Mom and Dad did not take his laughter and smiles for granted, and they will cling lovingly to that memory forever. We helped the little boy and his family to have a good life.

It is fitting that National Hospice Month is observed in November, at Thanksgiving time. President Bush has issued a Proclamation stating, “Americans believe that every person has matchless value throughout all of life’s stages. Our nation’s hospice caregivers lift up souls, offer peace of mind, and strengthen America’s culture of life.”

Making people aware of this is purpose of National Hospice Month. Everyone in the community should know about the care and support available to them through Hope.

Our mission is to provide exceptional care and support to every individual and their loved ones as they fulfill life’s journey. Our care includes pain management, symptom control, emotional support, and spiritual care as well as medications and supplies. The focus of care is quality of life for each day, making each moment count and providing hope.

During National Hospice Month and all year long, we encourage the community to be mindful of this special care available to everyone in need, regardless of age, type of illness, or ability to pay.
Hospice care can be provided for as long as needed. In some cases, care has continued for years. Most people in hospice care can remain in their own home. Hospice involves the family and offers professional support and training in caring for their loved ones.

The Thanksgiving season is a good time to talk with loved ones about living a good life, even near its end. Together, you can plan for your future health care needs and wishes, and you can document your instructions in the event you become unable to speak for yourself.

Hope also offers long-term care programs for the seriously ill who do not require hospice.

To learn more about how we can help, please visit our Web site at www.hopehospice.org or call Hope at (239) 482-4673 or (800) 835-1673.