Words that Can Soothe or Scare: Hospice

I cringe when I hear certain words. Hospice is one of those terms I’ve tried to ignore throughout my mother’s illness. No matter what a person really means when they say it, all I hear is: “The End.”

Between the Pond and the Woods

A few years ago, a writer told me she had been doing research on hospice programs and she thought I should look into them for my mom. She’d never met my mom and, from my perspective, her comment seemed awfully premature — even downright thoughtless. At that point, my mom still had a lot of life left in her and I was determined to avoid thinking about “The End.” A few years later, I did my own research and realized that hospice isn’t always a morbid concept.

The Merriam Webster’s Dictionary offers this explanation from their Concise Encyclopedia: “Hospices provide a sympathetic environment in which prevention (not just control) of physical pain has top priority, along with patients’ emotional and spiritual needs.” That actually sounds like a good thing. I mean, we’re all struggling to meet our loved ones emotional and spiritual needs and minimize their pain, right?

The problem with the notion of hospice is that you have to be willing to admit that there will be an “end” before you can open yourself to whatever hospice offers. Like most people who’ve cared for someone with dementia, I have used hope and persistence to prop myself up for a long time. A hospice evaluation forces you to redefine your ideas about the future and that’s so hard to do. According to the National Hospice and Palliative Care Organization (NHPCO),  “A patient is eligible for hospice care if a physician determines that the patient has six months or less to live if the terminal illness runs its normal course.”

Dementia is such a weird disease, it’s hard to know what will happen in the next six weeks, much less six months. But there is a list of symptoms that are considered valid indicators that it’s time to consider hospice. For my Mom’s type of dementia, they are:

  • The person is unable to walk, bathe, and dress independently.
  • The person speaks few intelligible words.
  • The person is incontinent of bowel and bladder.
  • The person is steadily losing weight.
  • One or more of the following has occurred in the past year: 1)Aspiration pneumonia; 2) Kidney/urinary tract infection; 3)Recurring fever after antibiotics; 4) Pressure ulcers (bed sores)

The symptoms vary somewhat for each type of dementia, so you should do your own research according to the diagnosis. Despite any fear the word may conjure up, the hospice people I’ve spoken with seem to be extraordinarily caring. It’s their job to help minimize pain, and they try to do that for caregivers as well as patients.

When Dementia Steals Language, A Touch Speaks Volumes

Once a person with dementia loses their language capacity, you need new ways to communicate. I still talk to my mom. But she can seldom answer me. Lately, I’ve been using touch to keep her connected, so I decided to do some research on the effects of massage.

Between the Pond and the Woods

Massages have been part of our family habits for a long time. Years ago, my mom, sister and I decided to stop buying Christmas gifts. Instead we set aside a time when we would go to a day-spa. Each of us got a massage, then we went out to dinner or to a show. The idea was: Have fun together, instead of buying each other stuff we didn’t need. Now, as Mom’s condition has declined, I’ve started massaging her hands or her earlobes gently. I ask her if she likes it and she just laughs, which seems like a good sign.

Although it’s hard to find research, plenty of people think that massage is helpful to people with dementia. The University of Maryland Health Center says, “People with Alzheimer’s disease become frustrated and anxious because they cannot communicate well with language. Using touch, or massage, as nonverbal communication may help. ” They quote a study claiming that people with Alzheimer’s who got hand massages — and were spoken to in a calming manner — had lower pulse rates and didn’t engage in as much inappropriate behavior. The also mention that “health care professionals think that massage may help not only because it is relaxing, but because it provides a form of social interaction.”

The Alzheimer’s Society (in England) says, “There is much anecdotal evidence that massage can help manage symptoms associated with dementia such as anxiety, agitation and depression, but studies have not been sufficiently rigorous to provide solid proof. It does seem likely that massage interventions may well be beneficial, but further research is required.”

Even in the absence of scientific proof, massage seems like the kind of thing that would soothe a body in great distress (heaven knows, it works for me!) I found an article in Massage Today written by Ann Catlin, a Licensed Massage Therapist, that helped me understand why that might be true. Ms. Catlin looks at a person with Alzheimer’s from the perspective of Abraham Maslow’s Hierarchy of Needs. I remember learning Maslow’s Hierarchy in college, but I never thought about my mom’s disease in this light. According to Maslow, all humans have the following needs:

1) Biological and Physiological needs – air, food, drink, shelter, warmth, sleep, etc.; 2) Safety needs – protection from elements, security, order, law, stability, etc.; 3) Love and belongingness needs – friendship, intimacy, affection and love, from different sources; 4) Esteem needs – self-esteem, achievement, mastery, independence, status, dominance, prestige, managerial responsibility, etc.; 5) Cognitive needs – knowledge, meaning, etc.; 6) Aesthetic needs – appreciation and search for beauty, balance, form, etc.; 7) Self-Actualization needs – realizing personal potential, self-fulfillment, seeking personal growth and peak experiences; and 8) Transcendence needs – helping others to achieve self actualization.

Ms. Catlin believes massage has the capacity to meet certain aspects of all these needs. She notes, “Massage therapists can bring a unique perspective to the care of elders living with Alzheimer’s disease by highlighting the role of compassionate human touch in satisfying human needs on all levels.”

Her article offers many more details about how massage can help dementia patients. I appreciate her perspective because it seems to grow from professional wisdom. And regardless of what it does for the patient, giving little massages to my mom meets some part of my own hierarchy of needs. I long to know that she can still sense how much I love her. If a touch can transmit that message, it’s very powerful medicine.