“One of the hardest things you will ever have to do

is grieve the loss of a person who is still alive.”

— Jeannette Walls

If you’re caring for a loved one with dementia, you are no doubt experiencing grief. Like the hundreds of millions of other dementia care partners across the world, you are in need of compassionate support and understanding.

I reached out to my colleague and friend Dr. Edward Shaw for his thoughts on your unique grief. He is director of the Memory Counseling Program at Wake Forest Baptist Health. A decade ago, he gave up his oncology practice to become a counselor and support-group leader for dementia care partners after the death of his wife, Rebecca, to early-onset Alzheimer’s disease.

I asked Dr. Shaw several questions about the grief of dementia care partners. I’m happy to share his thoughts with you here.

Q: When you meet a dementia care partner for the first time in your counseling program, what do they tell you about how they’re feeling?

A: They often tell me they’re lonely. Being a dementia care partner might be one of the loneliest and most isolating experiences of your life. Feeling desolate—that no one else can (or wants to) understand what you are going through—is common. There is also the sense of a shrinking world as the disease progresses through its stages. The person with dementia becomes less aware of and interested in the world around them, including people, places, and things. For this and other reasons, care partners often become literally bound by the walls of their home. In addition, relationships among family members and friends change. People with whom you and your loved one were once close may become more distant or even fade away. These are just some of the many losses you and your loved one with dementia are facing on the journey, and with these losses you will naturally grieve.

Q: As the brain grows more disabled, the relationship between the person with dementia and the care partner naturally begins to deteriorate. Can you tell me more about the grief related to that?

A: As a care partner, you will experience an ongoing and progressive loss of the relationship with your loved one with dementia. The nature of the loss depends on the nature of your relationship. The loss felt by a spouse or partner is different than the loss an adult child or sibling will experience, for example. Often, relationship losses are accompanied by a yearning for things to be as they once were.

Relationship losses include the loss of the twosome, which is the identity you had as two people together in a relationship, of being partners or parent-and-child, helpers, friends, and perhaps lovers, sharing a life. When dementia disrupts your twosome, it changes the individual roles and responsibilities you had in your relationship as well as those things you did together. Loss of intimacy is another factor, in other words loss of emotional closeness, and, for couples, sexual intimacy. And finally, the relationship begins to suffer from loss of a shared future.

Q: The care partner also suffers personal losses. What are those like?

A: As a care partner, you will experience many personal losses in order to provide care for your loved one with dementia, such as loss of your personal time and freedom— the autonomy to do what you want to do, when you want to do it. You may lose your own health, because the ability to meet your own medical and mental-health needs, including basic necessities such as eating and sleeping, can be so compromised. In addition, you may lose your occupation, because you may no longer have the time to pursue or maintain your vocation as well as the satisfaction and income you get from working, or if you’re retired or don’t have a job, to participate in volunteer activities. Social activities and recreation are often lost as well.

Q: Dementia care partners also have to deal with a lot of worry. How does that fit into the grief experience?

A: Dementia care partners suffer the loss of peace of mind. They constantly worry, and sometimes the worry can be overwhelming. It begins with diagnosis and continues throughout the stages of dementia. To worry is to be anxious about things that have already happened that you can’t change, that are happening in the present, and that may or will happen in the future as the journey unfolds.

What if errand-running goes badly tomorrow? Was that noise my loved one with dementia getting up and opening the door? What will the test results show? How will the bills get paid this month? What will the holidays be like this year? For dementia care partners, these and a million other worries erode peace of mind and multiply stress.

Perhaps the greatest future worry that both spouses and adult-child care partners have relates to placing their loved one in a residential-care facility. Often, husbands, wives, sons, and daughters alike have promised, “I’ll never put you in a nursing home”—a promise that cannot always be honored.

When a loved one’s care situation requires them to transition to assisted living, memory care, or a nursing home, the response of spousal and adult-child care partners is often different. I have observed that spouses typically feel a much greater sense of guilt and regret, which increases their stress, whereas adult children are more likely to feel some relief and actually have less stress. The guilt you may experience as a decision-making care partner can also be accompanied by your own mood changes, including depression and anxiety.

Q: I’ve also heard you talk about anticipatory grief and ambiguous loss. Can you tell me more about how those affect dementia care partners?

A: Anticipatory grief refers to the awareness that your loved one has a progressive, incurable disease, so at some level you are anticipating their progressive cognitive and physical decline as well as their eventual death and the grief associated with it. In other words, you are both grieving the losses you are already experiencing, and you are anticipating more grief to come.

Ambiguous loss, on the other hand, is the experience of having your loved one physically present yet absent in mind and perhaps spirit. For example, if and when your loved one has lost your identity and no longer knows you as husband or wife, son or daughter, brother or sister, relative or friend, the loss feels ambiguous. They’re right in front of you, yet they have no idea who you are and how your lives are connected.

Q: What is your advice to dementia care partners about coping with all of this grief and stress?

A: You need to practice good self-care, and to have the time and energy for that, you’ll need caregiving help. Dementia caregiving is a team sport. And if you’re team captain, you may very well need to recruit members to your team. Family members, friends, neighbors, coworkers, members of community groups such as churches—many are actually happy to help for an hour or two each week or occasional respite care if you only ask.

In addition, it’s essential to understand that your grief, which is your inward thoughts and feelings about all the losses, must be expressed outside of yourself. This is called mourning, and mourning is how you process and integrate your grief. When you talk to a trusted family member or friend about the stress of being a care partner—that’s mourning. Writing in a workbook or a journal—that’s mourning, too. If you scream at God or punch the wall in anger, that’s also mourning.

While grief usually comes naturally, you will have to make an intentional effort to mourn.

If you don’t express your grief, you will end up suffering even more. People who keep their grief inside often find themselves struggling with stress-related challenges, depression, anxiety, substance abuse, and other life-sapping issues. A good rule of thumb: If something is weighing on or bothering you, that means you need to share it outside of yourself.

Q: I’ve noticed that family relationships are often affected when one member had dementia. What about grief and stress among family members?

A: When a family is under stress, the likelihood of conflict increases. Having counseled many families over the last nine years, I can say with confidence that families who openly communicate with one another on the dementia journey can minimize conflict, reduce individual and family stress, and provide better care for the family member who has dementia.

In a typical family, there is one person who serves as primary care partner, usually the spouse, or if the parent with dementia is single, divorced, or a widow or widower, one of the adult children. When there are multiple adult children, usually there is one who is most involved, whereas the others, for various reasons, are less involved. Sometimes there is bitterness or resentment about the inequality of caregiving roles and responsibilities. If this is the case, the family conflict must be dealt with openly and honestly because of the negative impact it can have on the family system as a whole as well as the person with dementia.

The ideal way to manage family conflict related to a loved one’s dementia diagnosis and care is a family meeting. It’s helpful to have a meeting leader or mediator, perhaps a medical and/or mental-health professional to provide information and guidance. A family member, such as the unaffected spouse or eldest child, can also lead or mediate.

As with any relationship conflict, family challenges that occur in the setting of dementia are usually stressful, but they also can be, and often are in my experience, occasions for positive growth among individuals within the family and the family in its entirety.

Thank you to Dr. Shaw for this enlightening interview! I highly recommend his new book, The Dementia Care-Partner’s Workbook: A Guide for Understanding, Education, and Hope. It’s a workbook and self-study guide for care partners to loved ones with Alzheimer’s or any form of dementia. Its ten concise lessons not only step you through the types, brain biology, and progressive symptoms of dementia, they also offer practical tips for managing behaviors, coping with emotional issues, prioritizing self-care, and planning ahead.