Saying Goodbye But Still Here: Alzheimer’s, Anticipatory Grief, and Ambiguous Loss

As a caregiver to someone with Alzheimer’s Disease, you may often find yourself facing doubts and questions on a daily basis. Alzheimer’s disease presents many practical challenges such as dressing, bathing, and feeding the person. Yet, many caregivers claim the most difficult part is the inevitable “long good-bye” that comes as a result of the disease’s slow, progressive, incurable nature.

What is anticipatory grief?

Anticipatory grief is the pain and sadness that arises in advance of an expectant loss. It’s the emotional effect associated with losing a relative before that person dies. A common phenomenon among caregivers to the chronically and terminally ill, it is generally considered the most difficult type of grief to deal with. Caregivers experiencing anticipatory can encounter symptoms including mood swings, forgetfulness, disorganized and confused behavior, anger, and depression. Weight loss or gain, sleep problems, and general fatigue are also common.

In the midst of anticipatory grief, friends and family of those with dementia may also battle with ambiguous loss, or the confusing feeling of interacting with someone who is not fully present mentally or socially.

Anticipatory grief and Alzheimer’s Disease 

In a study conducted by researchers at the University of Wisconsin, an adult child caregiving for a parent with dementia remarked:

“I think when you lose somebody through death, …after a while time kind of takes the sting away. But when you’re dealing with somebody with Alzheimer’s, you’re reminded of what you have lost all the time.  Sometimes mom doesn’t know who I am and sometimes she’s very angry and that’s just typical of the disease. And even though rationally I know that it’s the disease, it’s like you wonder …why is that happening, you don’t like it but you have to deal with it.”

Does this sound familiar? Feelings of anticipatory grief and ambiguous loss are particularly common in the middle and late stages of Alzheimer’s disease, but may be apparent at any stage in the caregiving process.  The process often mimics a roller-coaster ride: A period of rapid decline may intensify your sense of lost for a time, but feelings may level off when the good days outnumber the bad. 

Coping with anticipatory grief

While there is no easy way through dementia, anticipatory grief, and ambiguous loss, take comfort in the fact that your reaction is normal and that you can take steps to cope. 

• Educate yourself about the stages of Alzheimer’s Disease

• Expect the unexpected. Persons with dementia often act in surprising and unpredictable ways. Prepare yourself for the ups and downs of the caregiving journey. 

• Celebrate the good days. Focus on your love for the person and the memories you are creating. Also validate the hard days. Some days you will wrestle with very dark, despairing feelings, while others will shine with rays of light.

• Seek support from your community. Reach out to family, friends, neighbors, and your religious community. 

• Practice self-care. Take care of your own personal mental and physical health needs to be the best caregiver you can be.

Are you a caregiver who has been through an experience with anticipatory grief? What lessons can you share? 

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4 Responses to Saying Goodbye But Still Here: Alzheimer’s, Anticipatory Grief, and Ambiguous Loss

  1. Pingback: What Causes Dementia?: New Research Findings point to unexpected factors - eCaring Forum

  2. Bill Kirkpatrick, LICSW says:

    I appreciated your review of how anticipatory grief can affect caregivers and tips for self-care. I would add the resource of the Alzheimer’s Association 24/7 helpline – 1-800-272-3900. Trained clinicians are there and have the time for caregivers throughout their journey. Thank you.

  3. Ariadne Weaver says:

    My husband of 30-plus years has Lewy Body Dementia, characterized by great fluctuations. I have seen him change from fairly lucid to quite confused, right in front of me. Talk about a roller coast ride (of seven years so far) and ambiguous loss. I am his sole, 24/7 caregiver, whoever he is at the moment.

    Like any dementia, LBD steals from me every day. Left alone without the husband I have known, I experience the real grief of losing our shared memories and our expected future. He is in no way the man that I married, and that grief is real today, not anticipated. I wish more articles for caregivers spoke to this, as yours did.

    My advice for other caregivers: take your grief seriously and allow yourself to mourn. Cry, sob, tell a good friend your feeling of on-going loss, and then get back to your loving care until you feel the need to cry again. The grief is real; don’t hold it in.

    • Melody Wilding says:

      Ariadne, thank you for sharing your touching, personal comment. It takes a great deal of courage to share our experiences of grief and loss, since the process can be so individualized and different for everyone. I think you give great advice by encouraging others to ride the emotionally roller coaster ambiguous loss can bring, because these fluctuating feelings are normal and part of the process. LBD has traditionally been a lesser known form of dementia, but no increasingly we are starting to see more resources for LBD caregivers like yourself. Glad you found the article spoke to you and thanks again for sharing.