Thursday, August 30, 2012

Guest Blog: What Cancer Patients Need from their Caregiver

When it comes to cancer caregiving, there’s no such thing as one-size-fits-all care. Every patient has a different set of needs and requires varying levels of attention. However, many cancer patients will require some of the same types of assistance during the progression of their disease.

Overall, patients rely on caregivers to help them remain as independent as possible while remaining in their own home. Cancer patients may need hygienic care and/or personal assistance as well as emotional support and general companionship.

Some patients need assistance with only one or two specific activities, while others with more advanced cancers require more aid. For many cancer patients, their level of ability changes from day to day as they experience side effects or symptom flare-ups. Caregivers can adjust the amount of care that they provide to correlate with the patient’s current needs.

Common Things that Caregivers Can Do to Help a Loved One with Cancer

Some of the things that cancer patients may need help with include:
  • Taking medications 
  • Driving to doctor’s appointments 
  • Getting dressed 
  • Showering and toileting 
  • Brushing teeth and hair (or other hygienic activities) 
  • Preparing meals 
  • Doing laundry
Caregivers also may need emotional support from their caregivers. Patients benefit greatly from having a trusted loved one who can listen to their fears and reassure them about the future. 

Caregivers often worry about not fully meeting their loved one’s needs. It’s a learning experience for everyone involved, but most caregivers adjust well to the role over time. Caregivers should communicate openly and frequently with the patient to make sure all of their needs are met. Support groups and forums can also give caregivers additional ideas for handling their new role and balancing their loved one’s needs with their own. 

Specific Caregiving Needs of Mesothelioma Patients 

Mesothelioma patients may have specialized advanced health care needs that other cancer patients do not have. Their cancer’s symptoms can greatly interfere with their ability to breathe or move about the home, so they may need a higher level of day-to-day personal care. Mesothelioma patients may also need assistance operating specialized home care equipment that they use to palliate these symptoms.

Many mesothelioma patients rely on portable oxygen tanks, mechanical ventilators or similar medical equipment. Caregivers may need to help patients change their oxygen cylinders or operate their ventilator. Some patients have ports for recurring chemotherapy infusions, and a few patients have shunts in their pleural or peritoneal cavity; patients may need help keeping these devices clean and sanitary.

It is very important that patients who use home care equipment receive care from someone with a medical background. If an in-home caregiver does not have the license to provide advanced physical care, they may call a hospice worker or licensed nurse to help with these health care services. This ensures that the patient’s medical needs are fully met.   

Author bio: Faith Franz researches and writes about health-related issues for The Mesothelioma Center. One of her focuses is living with cancer.

Sunday, August 26, 2012

Dementia: Engaging The Care Partner in Meaningful Ways

Susan* joins with other caregivers in recognizing one more essential step she must incorporate into her day: engaging Peter* in meaningful ways. First, by reducing distress and, next, by filling the day. She will need to do activities with him, not do everything for or to him.  She has come over a lifetime with Peter to be sensitive to his personal preferences and values. Who he has been. What he has valued. Who he is now. What he values now. Why it matters to him. She has become skilled at letting Peter have his "say" and set some of the priorities. At the same time, she remains aware of his limitations—reasoning and judgment are often flawed because of ongoing brain loss. Still, she pursues what it takes to make a day have meaning and joy for him.

She knows she must manage the environment as she did when she had young children—safety first, then health, and after these, structured activities. She figures out that Peter is capable of doing a variety of things: sorting socks, adding herbs or placing cut carrots and tomatoes into the salad or even learning a new exercise. The importance of stress reduction for her Alzheimer’s partner has contributed to her own sense of ease.

Early on Susan enrolled Peter in Adult Day Health, a program for Alzheimer and other dementia patients sponsored by their local hospital. This has turned out to be a godsend twice a week, when Peter gets picked up and returned home, and spends about five hours in organized activities he enjoys.  Peter especially raves about the guitar and vocal guy who comes in once a month with the old 20s and 30s standards. Susan makes certain that Peter never misses this treat. She’s learned to lean back on those days and catch up with her paperwork or attend a volunteer program she’s still involved in.  Because Peter is beginning to lose his balance, she plans to sign him up for a yoga class for elders. She’s already met the teacher, and loves her, and has decided to join Peter "just for fun."

A friend passed this along to Susan from her Alzheimer’s support group. She’s now learning to live by this "never-never list" in her daily interactions with Peter:
  • Never argue, always agree.
  • Never reason, instead divert.
  • Never shame, instead distract.
  • Never lecture, instead reassure.
  • Never say “remember,” instead reminisce.
  • Never say “I told you so,” instead repeat, regroup.
  • Never say “I can’t,” instead say “let’s do this.”
  • Never command or demand, instead ask or model.
  • Never condescend, instead encourage and praise.
  • Never force, instead reinforce.

*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.

Sunday, August 19, 2012

Dementia: Building Skills and Strategies

We return to the story of Susan and Peter*, a typical couple confronting Alzheimer's, as we explore strategies for interacting with a person who has considerable cognitive loss.

Peter can no longer grasp overly abstract ideas, and Susan frequently has to reframe what she says, how she says it and even when she says it. She relies deeply on Teepa Snow’s basic Do’s in “just having a conversation.” This means she has learned to go with the flow, use supportive communication techniques and rely more on objects or examples to help clarify an idea. Since their married daughter, Janine, has been traveling on a river boat down the Rhine recently, Susan uses their International Atlas to show Peter the couple’s daily itinerary.

She often finds herself gesturing and pointing, such as when Peter cannot find the word for his favorite cereal. Instead of trying to say the word, she points from one box to another until the correct one is identified. Once so stoical, Peter now weeps easily when he’s both frustrated and happy. Rather than trying to uncover some hidden meaning, Susan simply acknowledges and accepts his shifting emotions by using familiar phrases—“you’re fine, darling, it will be OK”—to soothe him. She’s also found that if she can engage him in a favorite interest, such as his precious coin collection, she can both respect his values and beliefs, while avoiding the negative.

Teepa Snow’s training materials also taught Susan that later in the disease, she will be focusing more on making an emotional connection, rather than “having a conversation.”  She is prepared to use visual cues, such as props or objects in their interactions. To get his attention, she can lift up a book, which serves as a signal for “time to get ready for bed” and “story time.” She will talk a great deal less, wait longer to hear him out, take turns to speak and keep it short. She will never confront him if he isn’t getting the words, but simply nod in ascent, showing how she is enjoying the exchange.  She is likely to start interactions with familiar speech— “How are you?” “Did you sleep well last night?” “Did you know it rained last night?” “Tell me about the new friend you met at Adult Day Health.” It makes little sense in late stage dementia to insist on a reality orientation or correcting errors.

Susan understands she must be well connected emotionally before she can distract her husband, when he is on a negative roll. Visual cues work best, she’s been told, and they should always be positive. She invariably knows that when she pets the dog, Peter will move forward to stroke his beloved pet.

Susan recognizes from the onset of Peter’s diagnosis that she will need a supportive network. Caregiving is not a role for the “lone wolf” or martyr. She begins by contacting her two daughters, who fortunately live only a few hours away. Both have offered to provide respite time for Susan once a month. That makes only six weekends a year for each girl. Both daughters, Janine and Patricia, express delight at spending quality time with their dad. They also intend to step forward for a “social call,” when brother Johnny comes marching home for his annual visit. Now that they have their own children, they can appreciate the tough times their folks experienced during their younger brother’s defiant adolescence. Both sisters know Johnny’s hot spots, and can sidetrack him from verbally attacking his dad by taking him to movies, cooking his favorite dishes and everyone playing a mean game of “Train” with their dad’s domino set.

Calling on her retired sister, JoAnn— who, after sympathizing deeply with her, consents to bringing her husband and taking over the caregiving for Susan’s much-needed yearly two-week vacation. Over the years, Peter has always enjoyed his sister-in-law and finds her husband, Mack, a “regular guy and a great fisherman.” Susan plans to continue her annual travels, this time with a daughter or friend. She’s excited about re-visiting the Grand Canyon with her new digital camera.

She also lets her favorite neighbors know Peter’s diagnosis, and asks for their help in relieving her while she shops or goes to the dentist and even visits friends on occasion. They soon discover how overjoyed Susan can be when they also volunteer to pick up a few groceries on their way home from work. Ben, next door, is especially helpful, keeping watch out his window for any sign that Peter might need a pal. Since he works at home, dropping in for coffee or to share a new guitar CD gives him a well-earned break and allows Susan to complete some household tasks. She may even pick up her latest novel and read in peace and quiet for a few minutes.

As a stay-at-home mom, Susan developed what turned out to be a perfect hobby: scrapbooking. Her kitchen cupboards are bursting with old and new volumes celebrating their family life together. Peter never tires of gazing at the childhood snapshots: there’s seven-year-old Janine with a missing front tooth, five-year old Patricia’s chopped hair after she took a pair of scissors to her lovely locks. Johnny, the athlete—what a kid! Here he is at 10 in his football outfit showing off after making three touchdowns.  Susan has managed to pry loose and remove all of Johnny’s photos taken during those “bad” years, until he settled down with a diagnosis and medications. No point in “getting dad started again.”

Another lifestyle change that suits both Peter and Susan is to alter their eating habits: whole foods, low or no dairy, plenty of fish, and stacks of fruit and vegetables. Susan’s found her energy level is so much higher, and Peter’s digestion and moods have improved remarkably.

*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.

Friday, August 10, 2012

Mindfulness for Caregivers

Taking a brief break from my posts on Alzheimer's to discuss something that's been on my mind lately: Mindfulness.

When caregivers recognize it’s time to change their life, they can turn to an ancient practice that’s close at hand—mindfulness. This approach works because it raises our level of inner awareness. We become more conscious of our attitudes and outlooks, and how we avoid, deny or shirk looking at harsh realities and uncomfortable truths. Using the tools of consciousness and intention, it is possible to change how we think, how we respond and how we care.

Once reserved for Buddhist monks, mindfulness has entered the mainstream as a means to master and restore ourselves. In spiritual circles, mindfulness is a path to inner awakening, and facilitates a shift to a higher level of compassion and understanding. Ram Dass, a leading practitioner, points out that we can be of most service to others when we face our own doubts, needs and resistances. As these obstructions lessen a hold on us, our generosity will flow more spontaneously and effortlessly.

The seeds for the current popularity of the practice were largely planted by the book The Miracle of Mindfulness. Decades of research have shown that mindfulness decreases stress and reduces the symptoms of depression, anxiety and hostility. Mindfulness facilitates learning and developing such skills as:

  • Heightened attention and concentration
  • Emotional and cognitive awareness and understanding
  • Bodily awareness and coordination
  • Interpersonal awareness, social responsibility and empathy
  • Deep relaxation and stress reduction
  • Improved ability to regulate physical and emotional pain 
  • Greater sense of the big picture
In the medical community, mindfulness is seen as a path to good physical health, as well as a supplement to traditional medicine. The University of Massachusetts Medical School, with its Center for Mindfulness, is among the proponents. Practitioners teach one exercise, which involves taking 20 minutes to eat two raisins. Participants notice how the raisins look and smell. They feel the texture. And, finally, they taste and chew the fruit.  The Center’s director, Saki Santorelli, emphasizes: “People who come to our clinic don’t care about Buddhism or any ‘-ism.’ They’re suffering and want relief. Mindfulness helps them tap inner resources.”

At its most basic level, mindfulness involves an awareness of thoughts, bodily sensations and feelings as energy. Energy, by its nature, is in a constant state of motion, which changes from instant to instant. Thoughts are “things,” which seek to manifest in material form. When we are in a state of mindfulness, we become the witness—the compassionate, nonjudgmental observer—who lives in the moment. As a compassionate witness, there is no past and no future—in other words, no expectations. There is only now. We begin with a new slate each moment. Thus, once we are aware of our thoughts, attitudes, feelings and actions, we can change them.

For caregivers, this translates into a script free of regrets and resentments. Forget about what your loved one “used to do” or “used to be”—brilliant professor, recognized authority in medicine, beautiful or talented woman, leading-edge artist. Now, we contend with a new “character,” our care receiver, who is hardly a paragon of virtue in his or her forgetfulness. We can come to know that new person without judging or lamenting this changeling. Your loved one may be far more gentle and loving than during his or her pre-illness state. Or, if the change is for the worse—physical and mental deterioration—then, it may be a matter of adjusting our mind and spirit to absorb the reality of new needs and different modes of care. By attending to the immediate symptoms and behavior, we can make more informed decisions about what that altered care might entail.

From my book, The ABCs of Caregiving: Words to Inspire You, House of Harmony Press, 2013. Get your copy now.

Sunday, August 5, 2012

Changing the Caregiver Perspective

The Story of a Typical Couple Facing Alzheimer's Continues...

Susan* was not born with the ability to handle difficult situations, such as troublesome dementia behaviors. At one time, she could only concentrate on her WOE—she felt chronically worn-out, overwhelmed and enraged. She was too proud and ashamed to confide in outsiders. Her focus was on the negative. She recounted  the disappearance of old friends, whose discomfort around Peter* kept them away. She mourned the loss of his former companionship and their sexual relationship. She guiltily admitted to bouts of irrepressible anger in the face of Peter’s intransigence and aggression, which is typical of some dementias. She acknowledged her deep resentment over Peter’s three siblings, who have been less than attentive. Their primary involvement has been interfering and critical.

Once she confronted her feelings of anger and shame, she decided to seek help. As a result of attending a local Alzheimer support group, she has undergone a major shift in her thinking and behavior. She no longer feels so powerless and voiceless. Workshops on dementia care, as well as reading medical newsletters and inspirational books, have provided countless ways in which she can develop skills and strategies.

What she has learned are six very basic principles that have transformed the way she provides care. Empathy comes first for Susan because it allows her to see the world through Peter’s eyes. From this vantage point, his world often appears confusing, lost and disconnected. Compassion allows Susan to stay centered with Peter by offering kindness and sympathy, even when his life appears upside down. Connection for Susan involved a wide array of visual, verbal, physical, emotional and spiritual cues. For instance, Susan and Peter hold hands as they begin every meal with a familiar blessing of the food, and after eating, they finish with a simple statement of gratitude. Mealtimes, once tumultous, have become calmer and far more enjoyable.

Supportive Communication requires not only acknowledging what Peter says, but Susan validates his statements by repeating them or asking for clarification. She also has a detective’s intuition for exploring what he really means, what his needs are and what may lie behind the words. She doesn’t stop there. She offers new words, a shift in location and a new activity or focus. Above all, making real changes involves Self-Acceptance—of limitations, foibles, past errors of judgment, fatigue, lack of patience and other shortcomings.

Susan feels she’s a “work in progress” as she struggles to eliminate negative thinking in her relationship with Peter. She understands all too well that Peter does not have control over many of his functions and behaviors, and does not blame herself for Peter’s frequent setbacks. If what she is trying is not working, professional advice is: she STOPS, backs off, thinks it through, and then re-approaches the situation by trying something  different. For instance, if the scrapbook idea simply caused Peter to be agitated, she would put it away, and consider an alternative plan. It might look like this. “How about some delicious hot chocolate, Peter? I even have some leftover marshmallows from last week when the grandkids were over.” Who could resist such an offer—surely, not Peter?

Undoubtedly, the most radical idea proposed for successful caregiving is the notion of being a Care Partner. For Susan, this took a leap of faith. She quickly rejected the “no-relief-in-sight” formula, because it undermined both her efforts to give care and Peter’s attempts to adjust to his illness. Instead, she cast about for an alternative approach. Gratefully, she found that caregiving can be regarded as a special, perhaps unique lifestyle, one that focuses on the benefits and rewards of being in partnership, even while living with a serious disease.

Susan also knows that their Partnership is time-bound. As Peter increasingly loses mental functions, and can no longer participate in a mutual way, she must shift into being a Coach. She remembers her son’s football coach, and how his leadership style inspired and encouraged the boys to do their best. He was a hands-on guy who knew the strengths and weaknesses of his players, and always focused on what a player can do, rather than push what he can’t. 

In fact, she spent yesterday with their new computer showing Peter how to access his photos, check his email and gain access to the Web. Peter’s enthusiasm was infectious, but when Susan left on an errand, he became easily discouraged. Susan will need to be by his side for this activity to be successful. Focusing on the Positive Aspects of caregiving allows Susan to pursue her interests, while at the same time assisting her partner’s efforts to live a quality life. 

The challenges of caregiving have reshaped Susan’s idea of giving as she recognizes what her care partner is still able to do. Through sharing dishes, folding laundry, sorting out or writing bills and other tasks, she has become more open to a deeper level of awareness in her day-to-day life. She continues to marvel at how animated and happy Peter can be when they work as a team or enjoy a film at home together. He remains his own person, despite changes, and she finds joy and satisfaction in acknowledging their ongoing relationship.

(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)

*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.