Am I “Living with” or “Dying of” an Illness

During a recent Speakers Bureau out in the community, I met someone who was on hospice care. After the talk, she came up to me and said, “At first, I thought I was ‘dying of” an illness. Then after hospice came into my life, I felt like I was ‘living with’ an illness. Hospice is teaching me how to live.”

Living with an illness Her comment was so eloquent and profound, and something I often hear from patients and families who have experienced hospice care.

In fact, this notion of living with an illnes, has been the topic of much discussion after news reports of a landmark New England Journal of Medicine study showed that cancer patients who were on hospice and palliative care lived longer than those who were not.

Dr. Charles von Gunten describes the results of the New England Journal of Medicine study in more detail below:

“The patients involved in this study who received palliative care from the moment of their cancer diagnosis along with standard cancer treatment lived twice as long as patients receiving cancer treatment alone. And they were spared much of the physical and emotional suffering that is far too common among people with life-limiting illnesses.”

“This study demonstrates that [hospice and] palliative care should not be considered a last resort, or giving up,” noted Dr. von Gunten. “It should be offered as early as possible as part of standard treatment.”

We all know the subject of hospice can be a difficult to discuss, as the myths surrounding hospice care include that it is “brink of death” care – or “giving up hope”. Because of this misconception, patients and their loved ones choose not to receive hospice care or wait to enroll in hospice care until it is too late. As a result they do not receive the full benefits of what hospice services can provide. So how can we help create that paradigm shift in thinking that hospice and palliative care really is about “living well” with a terminal illness?

It’s important for patients, caregivers, or anyone affected by a life-limiting illness to learn more about the health care resources that are available. Talk with your doctor, or call hospice and palliative care providers in the community to learn about the benefits this specialized care.

Advance Directives for San Diego Caregivers

With the New Year brings all sorts of resolutions. For me, one resolution is sitting down and completing advance directives for myself, as well as having “the talk” with my parents.

I never thought I’d have to think much about advance directives at my age – for myself or anyone else. I knew my parents had wills but I realized recently that I had no idea as to what was important to them at the end-of-life, other than they wanted to be cremated when they die. But what would happen if they became seriously ill? How would my parents want to be cared for? Do they want to be kept alive on a machine? Do they want to die at home? These are questions that my parents and I never really thought about or discussed in detail.

Then I realized that I had no directive to my family, as to what I would want, should I have a terminal illness or have an accident that left me unable to speak for myself.

One thing that I came across that will help me with this conversation was a simple form you can order from the Internet called Five Wishes. It’s practically a will within itself and lets your family or caregiver know who you want to make health care decisions for you when you can’t make them, the kind of medical treatment you want or don’t want, how comfortable you want to be, how you want your caregiver to treat you, and what you want your loved ones to know.

I initially had the “the talk” with my parents and it wasn’t as scary or uncomfortable as I thought it would be. It actually gave me a little peace of mind. So in 2010, taking control of heathcare decision making for me and my family starts with completing advance directives.

For caregivers and anyone living in San Antonio or Texas, download the advance directives form for free in English or Spanish.

Jill Ruff is a wife, mother of two girls ages 5 and 3, daughter, sister and caregiver; working full-time as a marketing director and living in the Carmel Valley area of San Antonio, CA.

Breathing Techniques to achieve Stress Relief and Relaxation

The practice of using of simple breathing techniques can help caregivers find relaxation and relief from stress in their busy lives. Oftentimes, the responsibilities involved in caring for an aging parent or loved one, coupled with work and personal obligations, can feel overwhelming causing anxiety and exhaustion.

breathing techniques to achieve stress relief and relaxation In the book The Relaxation Response, Dr. Herbert Bensen introduces the simple, effective, mind/body approach to achieving relaxation and relief from stress:

  • Sit quietly, back straight, and in a comfortable position.
  • Close your eyes.
  • Deeply relax all your muscles, beginning at your feet and progressing up to your face.
  • Keep them relaxed.
  • Breathe through your nose. Become aware of your breathing. As you breathe out, say the word one* silently to yourself. Breathe easily and naturally.
  • Continue this for 10 to 20 minutes – whatever is comfortable for you.
  • You may open your eyes to check the time, but do not use an alarm. When you finish, sit quietly for several minutes – initially with your eyes closed – then with your eyes opened.
  • Do not stand up for a few minutes.
  • Do not worry about whether you are successful in achieving a deep level of relaxation.
  • Maintain a passive attitude and permit relaxation to occur at its own pace. When distracting thoughts occur, try to ignore them by not dwelling upon them and return to repeating one*.

Practice the technique daily, but not within two hours after any meal, since the digestive processes seems to interfere with achieving a relaxation response. With daily practice, achieving a relaxation response should come naturally.

*saying “one” or any soothing, smooth sound – preferably with no meaning or association – will help avoid stimulation of unnecessary thoughts.

A Quick and Easy Recipe for Caregivers of Dementia Patients

Caregivers of dementia patients often encounter a different set of obstacles when it comes to food and food preparation. The loss of motor skills and overall mental breakdown that occurs in dementia patients can make eating unpleasant, make cutlery difficult to use, and even make patients dislike foods they used to enjoy. Simplicity and flexibility are often two traits that caretakers must learn to adopt when providing meals for these patients.

Patients at a partner location (heartwood seniors in San antonio) offers memory care and assisted living patients easy and fun recipes to try weekly.

Finger foods can be the perfect solution to many of the obstacles encountered by caregivers of dementia patients. Serving items like bread, fruits, vegetables, and crackers allow patients to choose the foods that are most appealing to them and eat completely on their own.

Finger foods also allow the patient with dementia to have several small meals or snacks everyday rather than larger meals. And if the timing of food is a challenge, finger foods are easy to put in Tupperware and save for later.

Here’s one easy finger food recipe that is a great variation of a sandwich and make a great finger-friendly snack, lunch, or dinner:

Bread roll-ups:

Ingredients:

  • Bread (wheat or white)
  • Butter
  • Soft cheese or pâté

Directions

First, cut the crust off of the bread and then spread with a light layer of butter. Next, spread with soft cheese or any other soft, sticky spread. Finally, take a corner of the bread and, like the title, roll it up.

Information from the Food for Thought Project by the Alzheimer’s Society in the United Kingdom.