Loving Someone Who Has Dementia

How to Find Hope while Coping with Stress and Grief

Pauline Boss

• Publisher: Jossey-Bass
• Year: 2011
• ISBN:
  9781118077283
• Edition: 1
• Topic: Psychology
• Subtopic: Developmental Psychology
• Index: Psychology

Research-based advice for people who care for someone with dementia

Nearly half of U.S. citizens over the age of 85 are suffering from some kind of dementia and require care. Loving Someone Who Has Dementia is a new kind of caregiving book. It's not about the usual techniques, but about how to manage on-going stress and grief. The book is for caregivers, family members, friends, neighbors as well as educators and professionals—anyone touched by the epidemic of dementia. Dr. Boss helps caregivers find hope in "ambiguous loss"—having a loved one both here and not here, physically present but psychologically absent.

• Outlines seven guidelines to stay resilient while caring for someone who has dementia
• Discusses the meaning of relationships with individuals who are cognitively impaired and no longer as they used to be
• Offers approaches to understand and cope with the emotional strain of care-giving

Boss's book builds on research and clinical experience, yet the material is presented as a conversation. She shows you a way to embrace rather than resist the ambiguity in your relationship with someone who has dementia.

Chapter 1

The Ambiguous Loss of Dementia

How Absence and Presence Coexist

The test of a first-rate intelligence is the ability to hold two opposed ideas in the mind at the same time, and still retain the ability to function.

—F. Scott Fitzgerald, The Crack-Up, 1945, p. 69

Rarely in human relationships are people completely absent or present. For this reason, loss and ambiguity are core elements in the human experience. With dementia, however, they merge into what I call ambiguous loss.1

Ambiguous loss is a loss that is unclear; it has no resolution, no closure. This unique and devastating kind of loss can be physical or psychological, but in either case, a family member's status as absent or present remains hazy.

Dementia creates ambiguous loss. The duality of your loved one's being absent and present at the same time is confusing, and finding meaning (or making sense of your situation) becomes immensely challenging. Without meaning, it's hard to cope. It's hard to manage even your day-to-day responsibilities. Ambiguous loss ruptures your relationship as you knew it. What you had before your loved one's dementia set in, and the way you were together, are now gone.

With dementia, something is definitely lost; you feel it, but no one comes to you—as they do after a loved one dies—to validate or support your loss. People even say things like “You're lucky; you still have your mate” or “You still have your parent.” But you know you don't, really.

Health care professionals might distance themselves from you because you're not the patient, just the caregiver. Making you feel even more confused and alone, none of the usual customs and rituals used to manage grief fit your kind of loss. You are on your own in a limbo that all too often goes unnoticed (or denied) by the larger community. Perhaps it is simply convenient for society to let unpaid family caregivers deal with dementia patients on their own. Or perhaps it's too troubling for others to see what they cannot fix. For many reasons, it takes extraordinary strength to be a caregiver.

Gone, Not Gone

In my therapy practice, I worked with Jenny, who told me her husband was “slowly slipping away into another world.” She knew the diagnosis, dementia due to Alzheimer's, and realized that the journey would be long—years, maybe decades. But she was desperate to find some relief from her anger and confusion. She wanted her husband back; he'd been a successful businessman, a loving husband and father—but he was no longer the man she knew. Gone—but still there.

The event that made Jenny reach out for help came when her husband of forty years became short tempered. He no longer treated her kindly. She said she felt as though there was a stranger in the house. This was not the relationship she wanted. She felt betrayed and abandoned.

Such uncanny transformation brings shifts not only in relationships but also in the way we see ourselves. Consider these difficult questions:

Am I still married if my spouse doesn't know me anymore?

Is he still a parent to our children if he doesn't know them anymore?

Am I still the daughter if I am now mothering my mother, my father?

People vary in how they answer such questions, but they all struggle with them. Jenny felt as if she were alone now and thus obliged to rethink who she was. With deep sadness, she said, “I feel like I'm leaving the shore for an unknown place.”

Jenny was experiencing the loss of her husband's mind and memory—and also their relationship as it had been prior to his Alzheimer's diagnosis. He was with her physically, but virtually absent psychologically. This incongruence was confusing and painful.

I told her that what she was experiencing was ambiguous loss—the most difficult kind of loss because there is no possibility of closure.

Having a name for the problem, she could begin her coping process. We talked about possible choices. She might choose to act as if nothing were wrong or, going to the other extreme, as if he were already gone and out of her life. She said she had tried the former and couldn't do the latter. I suggested she consider the middle ground.

“What is that?” she asked.

“You can learn how to live with the ambiguity that comes with dementia.”

Although living with ambiguity is not an easy task in a culture that values certainty, Jenny chose to wrestle with not knowing what was coming next or how it would end. But now she understood that the culprit was neither her husband nor herself, but the illness. Dementia brings with it something mysterious that skews a relationship beyond human expectation. Knowing that it was not her fault, she was better able to begin coping—not to find a solution to the problem but rather to live with the lack of solution and the unanswered questions.

Loving Half a Person

In my therapy practice, I see many people like Jenny—women and men who come to me because they are at their wits' end trying to figure out what is happening to them and their relationship with someone they love. It is not just about the exhausting and lonely caregiving role, but also about how to make sense of the situation they now find themselves in—without losing who they are in the process.

Regardless of its cause, dementia's ambiguous loss can debilitate even the healthiest of us. This is the struggle: making sense out of a nonsensical situation. You come to realize that life now is dramatically altered. Your loss is great, but there is no sympathy card; no one sits Shiva or holds a wake. Instead, there is a lonely and oft-misunderstood mourning—a chronic sadness2—with an indefinite beginning and indefinite end.

A New York psychologist who was also a caregiver, Carolyn Feigelson, asks a painful question: “How is it possible to lose half a person? Half is dead, half remains alive…. Unlike a fairy tale whose premise is poetic reality in which nothing can surprise the reader, the uncanny story violates the observer's trust in reality.”3 To be sure, caregivers who live with ambiguous loss live with a reality that is broken and no longer trustworthy. Their loss is irrational, illogical, and absurd, and yet real.

Whether dementia stems from illness or injury, the challenge is to embrace the ambiguity and confusion. This doesn't mean passively submitting—or settling. Rather, it means discovering your choices and making decisions about how to find some continuity in the midst of chaos and change. It means trying to find some clarity in the midst of ambiguity. And live with ambiguity we must, if not earlier in life, then certainly as we grow older.

Even in normal times, we are most often apart from those we love. I go to work in one place, my husband in another, and our children in yet another. Some are in other states, thousands of miles away. Friends are scattered around the globe. In this mobile society, most of us are separated from those we love most of the time. But contemporary families seem to take what dissonance there is between physical and psychological presence in stride. Is this because we know that we can come together again whenever we wish? Unlike with dementia, such loss is retrievable. We can fix the loss with an airplane ticket or phone call. (There are, of course, obstacles that prevent reunions, such as cost, war, or political strife.)

Once we see how rare it is for couples and families to be fully present for one another, physically and psychologically, we realize that most of us already possess some skills for living with the ambiguity of separation and distance—and surviving it. This previous experience, albeit different, helps teach us how to survive loving someone with dementia.

Finding the Middle Ground

With dementia, absence and presence coexist. Struggling too hard for clarity can lead to false answers that are attempts to erase the ambiguity. What I see most often is either premature closure (she is already dead to me, so I don't visit her anymore) or a denial that anything has been lost (he is just naturally forgetful, so he can still drive). Unless we consciously work hard to think about embracing ambiguity, any of us could quite easily fall into absolute thinking. This does not work with ambiguous loss and the real complexity you face.

When someone you love has dementia, the task is to increase your tolerance for the stress of ambiguity. To begin doing this, work at learning how to hold two opposing views at the same time—my parent is here, and not here; my mate is no longer the person I married, but still someone I love and will care for. Don't give up on loved ones when they are no longer able to be who they were.

Paraphrasing F. Scott Fitzgerald, learning to hold two opposing ideas in your mind at the same time allows you to move to the middle ground instead of sticking with the extremes. In the case of dementia, rather than the unfortunate extremes of either denial or acting as if the person were already dead and gone, there is a better choice: see absence and presence as coexisting. This is the best way to survive ambiguous loss.

With more paradoxical thinking, we live with the tension of conflicting ideas about absence and presence. Someone we love is both here and gone. When there's no cure to an illness or condition, the only window for hope is to become more comfortable with ambiguity and a less than perfect relationship.

Thinking in a more open way requires us to focus on the meaning of our relationship with an ill person rather than on what is normal. Gradually, as we accept the ambiguity, we can make sense of even an ambiguous loss, and thus more easily cope with it.

Adjusting Goals

Ultimately, the goal is not to end your relationship but to achieve a psychological shift or transformation in your thinking that fits a relationship which is now drastically changed by dementia. The goal is to accept the ambiguity.

When to Say Good-Bye

I continued to see Jenny when she had time. As I typically do with the caregivers I work with, I encouraged her to say good-bye to her husband at some point, even before death. She would know when that time came. Jenny kept a journal, and shares parts of it to help us understand how difficult the process really is:

January, after diagnosis

This is such a lonely disease. I am surrounded by people, but so lonely. The loneliness comes from being with someone who is no longer able to reach back to me. Loneliness is a different emotion than solitude. I have always enjoyed moments of solitude in life … but the loneliness is deafening. There is such an “empty space” in my life now. Sometimes I look at John while he is sleeping, trying to remember what our life was like.

July, two years later

My son called today. I am so thankful for his weekly calls from another state. It has been a great gift to me because he is not afraid to give me insight to help me keep perspective. Today I told him I am fighting for a quality of life for John… and he gave me a reality check in his answer. He said, “The fact is, Mom, Dad's quality of life is not going to get better, he will progressively deteriorate … and your hoping he will get better is keeping you from fighting for a quality of life for yourself.” He continued, “You need to realize that the man you have been married to for 40 years is now gone, and it may even feel that you are married to a stranger, one that you don't even like.”

After that conversation, I took a drive to clear my head. I popped in a CD by Josh Groban that my granddaughter had left in my car. It was new to me. The song, “You're Still You,” came on and the words stunned me—especially the ones about “through the darkness I still see your light.” I realized that I still hold the memories of...

Table of contents

• Cover
• More Praise for Loving Someone Who Has Dementia
• Title Page
• Copyright
• Dedication
• Preface
• Acknowledgments
• Introduction
• Chapter 1: The Ambiguous Loss of Dementia
• Chapter 2: The Complications of Both Loss and Grief
• Chapter 3: Stress, Coping, and Resiliency
• Chapter 4: The Myth of Closure
• Chapter 5: The Psychological Family
• Chapter 6: Family Rituals, Celebrations, and Gatherings
• Chapter 7: Seven Guidelines for the Journey
• Chapter 8: Delicious Ambiguity
• Chapter 9: The Good-Enough Relationship
• Conclusion
• A Note to Caregivers About Working with Health Care Professionals
• Resources
• Notes
• About the Author
• Index