Davis Funeral Chapel, Inc : Leavenworth, Kansas (KS) (2024)

by Alan D. Wolfelt, Ph.D.

“One of the hardest things you will everhave to do

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

— Jeannette Walls

If you’re caring for a loved one with dementia, you are no doubtexperiencing grief. Like the hundreds of millions of other dementiacare partners across the world, you are in need of compassionatesupport and understanding.

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

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

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

A: They often tell me they’re lonely. Being a dementia care partnermight be one of the loneliest and most isolating experiences of yourlife. Feeling desolate—that no one else can (or wants to) understandwhat you are going through—is common. There is also the sense of ashrinking world as the disease progresses through its stages. Theperson with dementia becomes less aware of and interested in the worldaround them, including people, places, and things. For this and otherreasons, care partners often become literally bound by the walls oftheir home. In addition, relationships among family members andfriends change. People with whom you and your loved one were onceclose may become more distant or even fade away. These are just someof the many losses you and your loved one with dementia are facing onthe journey, and with these losses you will naturally grieve.

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

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

Relationship losses include the loss of the twosome, which is theidentity you had as two people together in a relationship, of beingpartners or parent-and-child, helpers, friends, and perhaps lovers,sharing a life. When dementia disrupts your twosome, it changes theindividual roles and responsibilities you had in your relationship aswell as those things you did together. Loss of intimacy is anotherfactor, in other words loss of emotional closeness, and, for couples,sexual intimacy. And finally, the relationship begins to suffer fromloss 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 inorder to provide care for your loved one with dementia, such as lossof your personal time and freedom— the autonomy to do what you want todo, when you want to do it. You may lose your own health, because theability to meet your own medical and mental-health needs, includingbasic necessities such as eating and sleeping, can be so compromised.In addition, you may lose your occupation, because you may no longerhave the time to pursue or maintain your vocation as well as thesatisfaction and income you get from working, or if you’re retired ordon’t have a job, to participate in volunteer activities. Socialactivities and recreation are often lost as well.

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

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

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

Perhaps the greatest future worry that both spouses and adult-childcare partners have relates to placing their loved one in aresidential-care facility. Often, husbands, wives, sons, and daughtersalike have promised, “I’ll never put you in a nursing home”—a promisethat cannot always be honored When a loved one’s care situationrequires them to transition to assisted living, memory care, or anursing home, the response of spousal and adult-child care partners isoften different. I have observed that spouses typically feel a muchgreater sense of guilt and regret, which increases their stress,whereas adult children are more likely to feel some relief andactually have less stress. The guilt you may experience as adecision-making care partner can also be accompanied by your own moodchanges, including depression and anxiety.

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

A: Anticipatory grief refers to the awareness that your loved one hasa progressive, incurable disease, so at some level you areanticipating their progressive cognitive and physical decline as wellas their eventual death and the grief associated with it. In otherwords, 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 yourloved one physically present yet absent in mind and perhaps spirit.For example, if and when your loved one has lost your identity and nolonger knows you as husband or wife, son or daughter, brother orsister, relative or friend, the loss feels ambiguous. They’re right infront 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 withall of this grief and stress?

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

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

While grief usually comes naturally, you will have to make anintentional 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 strugglingwith stress-related challenges, depression, anxiety, substance abuse,and other life-sapping issues. A good rule of thumb: If something isweighing on or bothering you, that means you need to share it outsideof yourself.

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

A: When a family is under stress, the likelihood of conflictincreases. Having counseled many families over the last nine years, Ican say with confidence that families who openly communicate with oneanother on the dementia journey can minimize conflict, reduceindividual and family stress, and provide better care for the familymember who has dementia.

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

The ideal way to manage family conflict related to a loved one’sdementia diagnosis and care is a family meeting. It’s helpful to havea meeting leader or mediator, perhaps a medical and/or mental-healthprofessional 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 inthe setting of dementia are usually stressful, but they also can be,and often are in my experience, occasions for positive growth amongindividuals within the family and the family in its entirety.

Thank you to Dr. Shaw for this enlightening interview! I highlyrecommend his new book, The Dementia Care-Partner’s Workbook: AGuide for Understanding, Education, and Hope. It’s a workbookand self-study guide for care partners to loved ones with Alzheimer’sor any form of dementia. Its ten concise lessons not only step youthrough the types, brain biology, and progressive symptoms ofdementia, they also offer practical tips for managing behaviors,coping with emotional issues, prioritizing self-care, and planningahead. For more information and to order a copy (or, if you’re runninga support group, a set of copies), visit www.centerforloss.com.

About the author

Alan D. Wolfelt, Ph.D., is a respected author and educator on thetopics of companioning others and healing in grief. He serves asDirector of the Center for Loss and Life Transition and is on thefaculty of the University of Colorado Medical School’s Department ofFamily Medicine. Dr. Wolfelt has written many bestselling books onhealing in grief, including Healing Your Grieving Heart WhenSomeone You Care About Has Alzheimer’s. Visit www.centerforloss.com to learnmore about grief and loss and to order Dr. Wolfelt’s books.