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.

Love and Caregiving

Recently, Denise M. Brown, the founder of Caregiving.com, posed a question to her followers on Twitter: Which is the more powerful emotion... love or loss? While it’s not possible to live without experiencing loss, we can often count on love to get us through. 

Caregivers actually experience two kinds of love while looking after their loved one. Affective love is the profound and heartfelt feeling we associate with that singular word. We experience this form of love as an outpouring of generosity, inspiration and compassion. St. Paul referred to this expression of love as “greater” than either faith or hope, because it is immeasurable: deeper than the sea, higher than the sky. When we can summon this form of bottomless affection, our caregiving easily shifts into joyfulness, even delight. Joseph Campbell says: “Find a place inside where there’s joy, and the joy will burn out the pain.”

Effective love is a more mundane, but an equally important form of love. It entails the caregiving work we do on a day-day basis. Primarily, it is a giving of ourselves to meet a need, rather than an expression of tenderness and devotion.  When we set-up appointments, drive our loved one to the doctor, buy groceries, cook, clean and administer medicine, we engage in effective love.  We certainly can feel affectionate toward our love one in our everyday caregiving activities. Task-centered caregiving has a narrower focus than affective love, though, as it enables us to get things done.

Some caregivers may feel guilty when they can’t constantly muster tender and compassionate feelings for their loved one. They want to cultivate joy on a 24/7 basis, but find the workload and myriad details of caregiving too exhausting. “I haven’t any energy left after I’ve finished my day.” Or they may say: “I’m doing everything I can for his comfort and care, but that’s about all I have left to give.” To offset any negative self-talk, you can simply think of caregiving as a loving presence and stay heart-centered. Then it’s possible to accomplish both: added measures of joy along with completing your caregiving duties.

The Gifts of Caregiving, Part 2... Getting in Touch with Our Emotions

Hands-on caregivers—you who provide the day-in, day-out physical, financial, emotional and social functions that keep your loved one going—may rarely reflect on emotions, much less consider them gifts. For instance, we think of anger, fear, sadness and grief as dangerous, unwelcome guests in the daily flow of care. Instead, we silence ourselves, squelching our feelings, pushing away worries and fears, and vow to “get in control.” But, here’s why emotions are a special gift for caregivers.

Emotions are energy with a purpose, pure and simple. They carry information that’s vital to doing our best job as caregivers. Let’s look at the purpose of four red hot emotions caregivers often feel: anger, fear, sadness and grief.

Healthy anger is a protective device that restores our boundaries or creates new ones.  When you encounter medical or nursing home staff who treat you or your loved one disrespectfully, you can let them know they’ve crossed the line.  Injustices of all kinds deserve our attention. Anger warns us it’s time to act.

Free-flowing fear is a focusing, intuitive and action emotion.  Avoid the immobilizing fear of anxiety or the nonproductive worry state. Instead, when you experience an outpouring of fear, it tells you to slow down, test the waters, be cautious. This lifesaving energy is deeply invested in our security and our need for affection, as well as our power and control issues.  Paying close attention to fear can save your life and that of your loved one.

Sadness is the release and rejuvenation emotion. It’s the signal that something desperately needs releasing. It’s time to let go. It’s so easy to get stuck in our sadness as we watch our loved one decline. But this compounds our burden and contributes to feelings of despair—a no-no for caregivers. Instead, have a good cry, take in nature on a walk and count your blessings.

Grief is the immersion emotion. It arises when death occurs—whether an actual death or the death of profound attachments, ideas or relationships. Grief can make us feel inconsolable, but stay with it. Carla McLaren says that grief drops a person into the “river of all souls,” the deepest place we will ever be. Grief asks us to become quiet, so take that dive into the depths and restore yourself in the healing currents.

Embrace the gift of your emotions. Know that they serve your highest and best good.