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.

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.

A Typical Couple Faces Alzheimer's

Take Susan and her husband, Peter.*

A couple in their late 70s, they were married in the 1960s, managing to stay in love, through sharing mutual interests and delighting in their children and grandchildren. Not that they have escaped sorrow and loss. Instead, they resisted the tendency to get swept away by it. Today, they confront a new battle: the dreaded diagnosis of Alzheimer’s disease. Grappling with Peter’s strange new behaviors has become a full-time occupation for Susan.

Keep in mind that bizarre or troublesome behaviors do not happen in a vacuum. Let’s consider Susan’s efforts to cope with her husband, Peter, and his recent tendency to wander late at night. She’ll need to consider crucial pieces of information. What type and level of cognitive impairment does he have? What is the history of his personality, habits, preferences and stress behaviors? Does he have other medical impairments?  Has his environment changed, and in what way? What about his work and family history? What of his leisure time and spiritual life? What typically sets him off versus offers him comfort?

Susan has an eureka moment! She realizes that a proposed visit from their mentally ill son, Johnny, has triggered old fears and resentments. At the same time, his faithful Rover is at the vet with a recurring virus. When upset, Peter used to hop in his car with the dog and drive for hours until he could settle down and resume his routine. Now that he can no longer drive, Peter takes off a different way—walking for hours and invariably losing his way. 

Because Peter is in mid-stage Alzheimer’s, Susan knows that lecturing him when he’s distressed can send him into orbit. Instead, she reaches out for an emotional connection through eye contact, hugging and assuring him that “all is well.”  When Peter expresses his anger about their “lost” dog, Susan nods sympathetically and agrees with him that the house seems empty without Rover.

Together they move into the kitchen, where Susan pulls out a worn scrapbook containing photos of Johnny’s early years, before he was afflicted with schizophrenia. Susan also promises that Rover will be back home tomorrow, and then all three can take a long walk in the woods. The next morning she goes to the hardware store and buys secure locks to ensure that Peter cannot open the doors by himself, night or day. Peace is restored. 

(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.

What Caregivers Need to Know About Dementia

Most of us know that not all diseases are created equal.  A number of chronic diseases include dementia as one of the defining symptoms, although it impacts mental and physical functions differently.  Parkinson’s disease certainly manifests a deterioration of mental functions, but not necessarily in a steadily progressive manner. Harry may be unable to remember his wife’s name today, but next week he appears quite cogent—a pattern of in and out. Congestive heart failure shows up as mental confusion, especially after a mini-stroke, but after the brain re-stabilizes, Mom can suddenly remember where she put her list of drugs. 

The word dementia is a catch-all phrase that indicates a decline in your ability to think, remember and reason. It can be caused by a number of brain disorders, such as a stroke—afflicting 795,000 people in the United States each year—and other ailments. People with dementia may lose the ability to solve problems, experience loss of emotional control and undergo personality changes. They usually develop impairments in their ability to perform daily activities, such as dressing or eating. Many, though not all, dementias cause memory loss. Alzheimer’s disease, among the dementias, is progressive, incurable and eventually kills the patient. 

According to the Alzheimer’s Association, 15 million family members and friends provide unpaid care to people with dementia. Hundreds and thousands of them meet regularly in support groups to exchange information and understanding not available elsewhere. Early warning signs of Alzheimer’s disease are especially relevant.  Although most Alzheimer cases are not diagnosed until mid-stage, medical recommendations urge patients to begin Alzheimer drugs as early as possible to improve and stabilize thinking, language and behaviors.  These drugs treat only symptoms, though, as the disease has no cure, and will continue to advance.

 

The warning signs include:

• Memory loss for recent or new information—for example, repeats self frequently.
• Difficulty doing familiar, but difficult tasks—managing money, medications, driving.
• Problems with word finding, mis-naming or misunderstanding
• Becoming confused about time or place—getting lost while driving, missing appointments.
• Worsening judgment—not thinking things through as before.
• Difficulty problem-solving or reasoning.
• Misplacing things—putting them in “odd places”—the ice cream cake into the oven, the coffee cups into the freezer.
• Changes in mood or behavior.
• Alterations in typical personality.
• Loss of initiation—withdraws from the normal pattern of activities and interests.

Many abilities are affected by dementia—thoughts, words, actions, feelings. It is variable, and affects people differently, depending on which specific brain parts have been impacted. If progressive, more of the brain dies over time and key areas get hit. These typically involve the frontal lobes, our intelligence center. Why is cognitive loss considered to be so devastating in our culture?  Because our over-rational society has put cognition as the most prized part of human activity. Irrational behavior is treated as pathological—out of control, unreasonable and deviant. Without a doubt, dementia can produce extreme behavior that violates anyone’s sense of normal or appropriate.  Teepa Snow, a dementia care and training specialist extraordinaire, offers some examples of deepening levels of concern: Annoying, Risky and Dangerous behaviors.

 

Problem Behaviors

Losing important things, getting lost, unsafe task performance, repeated calls and contacts, “bad mouthing” you to others, resisting or refusing care, not following care plans, being rude, making 911 calls repeatedly, undressing in public.  These are definitely annoying for the caregiver and her family, and become wearing over time. Such behaviors also take time away from other responsibilities.  Still other behaviors are risky, and unpredictable, and could cause harm to self or others. These can include: using drugs or alcohol to “cope,” eloping or wandering, and forcing intimacy or sexuality on another.

 

Dangerous behaviors are especially problematic and put the person, care provider or loved ones at immediate risk for injury.  Paranoid or delusional thinking, threatening caregivers, striking out at others, falls and injuries, infections and pneumonias, failure to eat or drink all constitute behavior that puts self or others in jeopardy. The secret for caregivers is to have a clear understanding of what level she’s dealing with and develop a strategy, rather than simply reacting to difficult behavior.

 

Next: Peter and Susan, A Typical Couple, Confront Alzheimer's

 

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

 

The Costs of Care

The price tag for end-of-life care can be overwhelming for most Americans. According to AARP Magazine (June/July 2012), nursing homes, which can provide extensive, skilled medical care, are the most expensive facilities, with average costs of $222.00 per day. That’s a whopping $6,660.00 per month. Next in line are assisted-living facilities, which offer a home-like atmosphere, and cost $3,300.00 per month for a one-bedroom private residence. A third option, home health care, allows elderly patients to stay in their homes while receiving daily care. The national median hourly rate for a non-Medicare certified home care aide is $19.00. Prices vary from state to state on all facilities. For instance, Alaska nursing homes charge a median cost of $783.00 daily, which adds up to an astounding $23,490.00 per month.

Do we dare explore hospital charges? Amanda Bennett, who chronicles her husband's end-of-life drama in The Cost of Hope (Random House, 2012), indicates just how out-of-control our system really is. In the last year of his life, they paid $33,382.00 for one hospital stay; $43,711.00 for the next. And a final $14,022.00 for the last three days of life. Over a seven-year period total, costs for care were an unbelievable $618,616.00.

Is this an inevitable part of the American way of dying?  The word is spreading to patients and their families that these excess expenses are an unfortunate side effect of medical advances and specialization.  Our medical system is a dysfunctional one that feels like a hyped-up conveyor belt passing patients from one professional to another. Critics say that the medical machine keeps on ordering tests and procedures even on dying patients, treating the symptoms, but ignoring the whole person. In short, we have a disease-treatment system rather than a health care system caring for human beings, which does little to extend life, and may make matters worse, especially for patients with dementia.

How can patients and their families fight back against overtreatment and runaway costs that may plunge families into bankruptcy and poverty, not to mention emotional turmoil?  I recommend three approaches. First is careful monitoring of all tests to avoid duplication. A second consideration is to evaluate your insurance company’s payment for specific procedures, which can vary widely. Third is to have that conversation with trusted professionals, your primary physician or hospice worker, about when “enough is enough,” and make an immediate shift into “comfort care.”

Your calm and supportive presence, along with pain management can raise everyone’s spirits, most significantly your dying loved one’s sense of peace.

Beatitudes for Caregivers

Here are my Beatitudes for Caregivers. They bring to mind a vision of blessed happiness, showing how caregivers can be free of a sense of obligation, while they pursue an enlightened path to giving care. Psalm 41– "Blessed is she who has regard for the weak; the Lord delivers her in times of trouble" – moved me to create this tribute to caregivers everywhere. May these words inspire you on your caregiving journey.

1. Blessed are those who take on the caregiving commitment, for they can love, accept and respect themselves.
2. Blessed are they who mourn, for they shall be comforted.
3. Blessed are the humble, for they shall learn new skills and understanding.
4. Blessed are they who remain steadfast in giving care, for they shall have inner satisfaction.
5. Blessed are the compassionate, for they shall have a deeper connection with their loved one.
6. Blessed are they who give care with an open heart, for they shall be honored by all.
7. Blessed are the peacemakers who hold families together during distressful times, for they shall be supported.
8. Blessed are the caregivers who are criticized for their efforts, for they shall endure.
9. Rejoice, and be glad that caregivers are willing to carry their burdens lightly, for their example lights the way for others.

Tips for Staying Healthy While Caregiving

The following therapeutic lifestyle changes (from Caregiving Our Loved Ones) can help keep you out of the darkness of depression and obsessive concern over your loved one...

Omega-3s
Take 1,000 milligrams of Omega-3s, the fatty acid EPA each day. Andrew Weil says this is the most studied dose for combating depression, plus a multivitamin. Restoring your energy levels is a basic start for addressing the challenges of caregiving.

Aerobic Exercise
The next most basic thing after meeting your nutritional deficits is aerobic exercise. Weil emphasizes 30 minutes a day three times a week as a minimum. I recommend walking, biking, swimming, jogging or other vigorous exercise daily.

Light Exposure
For those of us in the Pacific Northwest, where rain and clouds dominate the landscape for months on end, we know the advantages for getting our sunshine when we can. Sunshine helps regulate the circadian rhythms that govern sleep,energy and hormone levels. Alternatively, sit in front of a special light box that simulates natural sunlight. Whatever you do, remember that sunshine is a must. Take your chores outside, if necessary, but let yourself soak in sunshine for a good 30 minutes. Avoid getting sunburn, though. Sunscreen helps here.

Social Connection
Social support is crucial for the caregiver to overcome the isolation of caregiving. It’s usually a good idea to schedule at least two social activities a week (even if you don’t feel like it when you do the scheduling). Leave behind or limit time with the people who bring you down. You have taken on enough responsibility with caregiving. Enjoy your free time with people who make you feel good.

Adequate Sleep
Chronic sleep deprivation increases the risk for depression and for falling into the pattern of caring too much. Aim for seven or eight hours of rest a night. Weil recommends dimming lights about an hour before your bedtime, and go to sleep and wake up at the same time each day. This lifestyle change will probably be the hardest to achieve if you have night duty. If sleep shortages are unavoidable, take regular naps to refresh your energies.

Anti-Rumination Strategies
Rumination is a tendency to dwell on negative thoughts in a non-productive way. This is most likely to happen when you spend time alone, so avoid extended periods by yourself. If you find yourself ruminating, Weil reminds us to pick up the phone and call a friend or do something enjoyable.

I also suggest two more lifestyle changes...

Seek Professional Help
Consult a holistic physician or naturopath to work with you on any physical changes you may be experiencing. Menopause results in sharp fluctuations in estrogen levels, which can create mood changes. Thyroid depletion often occurs after menopause, and can contribute to a host of symptoms, including exhaustion. Blood sugar irregularities can signal more serious medical problems, such as diabetes.

Locate Respite Care
When you need a break—and you surely will—locate a nearby nursing home or assisted living facility that has respite care openings for your loved one. A few days or weeks may be all you need to recharge your batteries. Working with your medical provider and local nursing facilities makes complete sense, because you certainly cannot sustain long-term caregiving without maintaining your health and well-being.

The life you save may be your own!

Caregivers... Do You Know Someone That Cares Too Much?

Here's a quick checklist:

• My good feelings about who I am stem from receiving approval from you, the care receiver, as well as other loved ones, friends and people at work.
• My struggle affects my serenity.
• My mental attention is focused on you, the care receiver.
• My fear of your anger, disappointment and regret determines what I say or do.
• My social circle diminishes as I involve myself with you.
• My self-esteem is bolstered by relieving your pain.
• My own hobbies/interests are put to one side. My time is spent sharing your hobbies/interests.
• I am not aware of how I feel. I am only aware of how you feel.
• I am not aware of what I want. I ask what you want.
• The dreams I have for my future are linked to you.
• The quality of my life is in relation to the quality of yours. 

Stay tuned for ideas to keep you, the caregiver, healthy.

Rethinking the End-of-Life

As caregivers, many of us feel we’ve attended to our loved one’s end-of-life matters when we’ve arranged for the Living Will, Durable Power of Attorney for Health Care, Durable Power of Attorney, Last Will & Testament and other legal and financial documents. Once Hospice has been contacted, we may even believe our job is done. Yet, there is much to be said about the social and spiritual preparations for death and dying that help to more gently and lovingly close this phase of our relationship.

Rethinking the end-of-life moves us from avoidance and fear to acceptance and love, and is both liberating and renewing. Our culture has it upside down. In our own lives, we expect to experience the departure of a loved one as an occasion for profound suffering and grief, perhaps taking us to the depths of despair. These feelings sow confusion and have us believe that nothing remains outside of pain and loss.

Such an outlook blinds us to the continuing role we play throughout the dying process, as well as recognizing the larger truth in the death process. We can begin at the beginning—once our loved one appears to be seriously declining—by having that conversation with medical providers about significant issues.

How much time is left for your loved one? What types of pain medications should be considered when the need arises? When should you invite Hospice into the treatment circle? What is your loved one’s preferred place for dying (home, relative or friend’s home, nursing home, hospital, Hospice facility)? If your loved one is unable to make this decision, the medical directive should include this information.

What kind of funeral arrangements have you or your loved one planned—full burial or cremation; church or funeral home or no memorial at all?  Writing that obituary can actually be done before the loved one passes. Completing these tasks can be remarkably consoling. It also frees you up for the spiritual connection you will continue to have with your loved one.

Truth is not to be found in the emptiness of separation. The truth is that there is no separation. And yet, it is the heart alone that can say it, and we must listen to the voice in silence. When your loved one leaves, his or her space remains empty—the father, the wife, the daughter, the grandparent. We can choose to leave it free, without giving in to worry, impatience and endless grief. Knowing that this same place is filled by your loved one’s presence is the most precious of treasures one can possess. For instance, no one can replace the beloved mother; the deeply cherished husband. Neither separations, nor time, nor even forgetfulness can still the heart that has chosen to love.