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Showing posts with label loving someone with dementia. Show all posts
Showing posts with label loving someone with dementia. Show all posts

Saturday, May 9, 2026

Coping With Ambiguous Loss

The term ambiguous loss was coined by Dr. Pauline Boss in the 1970s. She is an internationally-recognized American educator, researcher and family therapist.

She has written a few books on the topic of ambiguous loss:
  • Ambiguous Loss: Learning to Live With Unresolved Grief
  • Loving Someone Who Has Dementia: How to Find Hope While Coping With Stress and Grief
  • The Myth of Closure
What is Ambiguous Loss?
Ambiguous loss is defined as a loss that lacks closure or a clear understanding. 

Dr. Boss classified two types:
  • Physically Absent But Psychologically Present: A loved one is gone physically but remains present in the minds and hearts of family and friends (e.g., a missing person, estrangement, giving up a baby for adoption, separation). The experience is: Gone but no certainty if they are alive or dead, which often leads to a search for answers.
Coping With Ambiguous Loss
  • Physically Present But Psychologically Absent: In this type loss a person is physically present but they are emotionally or cognitively absent (e.g., dementia/Alzheimers; traumatic brain injury; chronic depression; an intense preoccupation with work, technology, etc.) The experience: "Here but not here" which leads to grief for what is missing.
Ambiguous loss is considered the most stressful loss because it usually doesn't allow for typical grieving rituals and closure.

Coping With Ambiguous Loss
Coping with ambiguous loss involves accepting that complete closure may not be possible.

Strategies for coping include:
  • Finding Meaning: Acknowledging the ambiguity and that the situation is not within your control but finding personal meaning for yourself
  • Balancing Emotions: Managing the tension between hoping for a return/recovery and accepting the current reality
Coping With Ambiguous Loss

  • Seeking Support: Utilizing therapy or a support group for emotional support and to validate your experience
Clinical Vignette
The following vignette, which is a composite of many different cases, illustrates how someone can cope with the ambiguous loss of a loved one being physically present but psychologically absent:

Gina
When Gina's mother, Ann, was diagnosed with Alzheimer's disease, Gina felt crushed. Her mother had always been an intelligent, active and loving person who held a responsible job as a hospital administrator for many years before she retired.

Coping With Ambiguous Loss

Several years after Ann retired, she complained to Gina that she was getting forgetful and confused. When Gina discussed this with her brother and sister, they decided to take their mother to a neurologist to get evaluated. That's when they were told that their mother was in the middle stage of Alzheimer's.

The neurologist provided them with resources for their mother and support groups for them, including the Alzheimer's Association. 

They talked about the diagnosis as a family and realized they had different views. Gina and her sister felt their mother should be told because they knew she would want to know what was happening to her and be part of the planning. However, their brother, who was the eldest, said their mother would only get upset if she knew so she shouldn't be told.

After going back and forth about this decision for several weeks, the brother relented and said he would go along with what Gina and her sister thought was best.

When they told Ann, they weren't surprised to hear that she already had a feeling that she might have Alzheimer's because her mother and maternal grandmother had it (although people don't always inherit Alzheimer's).

Knowing that she would decline over time, Ann was very sad, but she was also a practical person. She asked her children to arrange for visits with a geriatric social worker and an elder care attorney to advise them.

Gina and her siblings each had different reactions. Gina's brother tended to be stoic and he didn't want to discuss his feelings. Gina and her sister supported each other in their grief. They talked frequently. They also joined an online Alzheimer's support group and felt relieved to hear that other adult children were going through the same emotional ups and downs as they were experiencing.

Gina also sought help in individual therapy because she wanted the privacy to talk about things she didn't feel comfortable talking about in the support group.

She told her therapist that she had always relied on her mother for emotional support and advice whenever she had to make big decisions and the thought of not being able to do that made her feel tremendous grief.

As her mother declined, Gina's therapist recommended that she work on a family photo album with her mother. So, Gina gathered together the loose family photos her mother kept in a box, bought a photo album and went through the pictures with her mother as they placed the pictures in the album.

She and her mother laughed and reminisced about the events in the photos for hours. Her mother told her she hadn't thought about some of the people and events in the photos for a long time.

They also listened to some of her mother's favorite music which she enjoyed when she was younger. This also stimulated certain memories for her mother.

While her mother was still able to garden, Gina's sister and Ann spent time planting in the mother's garden, which they both found relaxing.

Gina's brother took Ann for walks around the neighborhood and pointed out places that Ann knew from years ago. 

Although the medication the neurologist prescribed helped to slow Ann's decline, eventually, Ann could no longer be maintained at home with a home health aide, and Gina and her siblings had to make tough decisions.

At that point, their mother had declined so much that she only remembered her children intermittently. She was also frequently agitated, which was so different from how Gina and her siblings had always known Ann to be prior to the onset of Alzheimer's.

Gina and her sister wanted to explore a nursing home, but their brother refused to even consider the idea. The thought of putting their mother in a facility was beyond what he could bear. So, he decided to take time off from work and, with the help of an aide, took care of Ann full time.

He soon discovered how exhausting this was--even with Gina and her sister relieving him for a few days out of the week and the help of a home health aide.

When Gina's brother needed to return to work, they spoke with the geriatric social worker who helped them to find facilities that were suitable for their mother. They visited several places, which were good but left each of them feeling very sad.  These facilities had memory units to help patients with dementia and Alzheimer's, patients were well taken care of, but the sight of many elderly impaired patients was upsetting.

At that point, Ann was no longer able to make decisions for herself. Gina and her siblings had already consulted with an elder care attorney to establish a durable power of attorney with Gina in charge. Then, they chose a facility close to where they all lived so they could visit Ann frequently.

At each stage of her mother's decline, Gina felt, at times, that her sadness and grief were unbearable. But she continued to discuss her feelings with her therapist and in the Alzheimer's support group because this was unlike any loss she had ever experienced before.

Over time, even though she felt tremendous sadness and grief, she accepted she couldn't control what was happening to her mother. 

There were some days when her mother seemed content to be participating in activities at the facility and other days when Ann glared at Gina and her other children and said, "Why did you put me here?"

Every time Gina felt she had come to accept her mother's condition, she had to contend with the next stage of her mother's decline. 

Gina's friends, who had older parents who were still functioning well, seemed to want to avoid talking to Gina about how she felt. Gina felt frustrated about this, but she understood that they had their own fears for what might eventually happen to their parents.

In addition to therapy and the Alzheimer's support group, Gina also felt some comfort in journaling

After her mother died, Gina felt a mixture of sadness, grief and relief that her mother was no longer suffering. 

She told her therapist she felt guilty that she felt relief and her therapist normalized what Gina was experiencing. She told Gina that it's common for adult children to experience a mixture of emotions including relief.

Gina learned to accept that her grief and sadness would come in waves so that she could feel better for a period of time but, seemingly out of nowhere, she felt tremendous sadness.

Over time, Gina learned to live with her grief. There were even days when she felt hopeful and grateful for what she had in her life. 

She also volunteered to be a peer group leader with the Alzheimer's support group so she could help others to deal with their loss and provide them with a sense of hope.

Conclusion
There are two types of ambiguous loss. I focused on the physically present but psychologically absent because this type of loss isn't addressed as often as the physically absent but psychologically present.

The vignette presented a daughter with a mother who had Alzheimer's. This type of loss could also involve someone coping with a sick or cognitively impaired spouse.

Coping With Ambiguous Loss

Both types of ambiguous loss are difficult, but with help there is hope.

Getting Help in Therapy
Loved ones can be well-meaning but often say and do things that are unsupportive.

A licensed mental health professional, who has an expertise with helping clients to cope with ambiguous loss, can help you to navigate the stages of loss.

Rather than struggling on your own, seek help from a qualified mental health professional so you can learn to cope with ambiguous loss.

About Me
I am a licensed New York psychotherapist, hypnotherapist, EMDR, AEDP, EFT (for couples), Parts Work (IFS and Ego States Therapy), Somatic Experiencing and Certified Sex Therapist.

I have helped many individual adults and couples over the years with grief, loss, trauma and many other issues.

To find out more about me, visit my website: Josephine Ferraro, LCSW - NYC Psychotherapist.

To set up a consultation, call me at (917) 742-2624 during business hours or email me.

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