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 of 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 nursing homes, 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.

Also See My Articles

The Challenges of the "Sandwich Generation": Raising Children and Taking Care of Elderly Parents

Coping With the Loss of Loved Ones - Common Reactions 

The Many Layers of Grief 

You Continue to Have an Internal Relationship With Your Parents After They Have Died

Coping With the Loss of a Pet

Parallel Losses For the Psychotherapist and the Client

Loss and grief are an unfortunate part of life, and it's one of the reasons why many people come to therapy (see my articles: Who Are You After Your Parents Die?,  Grief: The Emotional Impact of Losing Both of Your Parents and Coping With Grief).  There are often times in psychotherapy when the psychotherapist and the client are going through parallel losses.  In fact, this phenomenon occurs more often than most people would think (see my article: The Psychotherapy Session: A Unique Intersubjective Experience).

Parallel Losses For the Psychotherapist and the Client

This parallel process between the psychotherapist and client often benefits the therapeutic work because, through her empathy, the therapist has more to give to the client because she is going through a similar process.

In order for this process to be healing for the client, the therapist must be trained and skilled at being able to experience the client's suffering while, at the same time, dipping into her own experience briefly without getting lost in her experience.  

The psychotherapist's focus must be mainly on the client and, while their experiences might be similar in some ways, the therapist can't assume that the client's experience is exactly the same as the therapist's experience.

From my own experience as a psychotherapist and from what colleagues have told me about their experiences, it's often the case that a client comes to therapy at the same time that a therapist is having a similar experience.

Depending upon the psychotherapist's theoretical orientation, the therapist probably won't share her loss with the client, especially if it will impinge on their work, because the therapy is focused on the client and not the therapist.

There might be times when it is therapeutic for the therapist to share a similar personal experience with the client, but only if it is in the service of furthering their work together.

Let's take a look at how this parallel process between therapist and client shows up in therapy in the following fictional vignette:

Fictional Vignette: Parallel Losses For the Psychotherapist and the Client

Lois

Lois began therapy because her mother, who had advanced Alzheimer's, was rapidly decompensating both physically and mentally.  

Parallel Losses For the Psychotherapist and the Client

Her mother began showing signs of dementia about 10 years before.

Until recently, the decline had been slow and her mother still knew Lois and Lois' siblings.  But a month prior to Lois starting therapy, her mother was becoming increasingly confused and no longer recognized Lois and other family members.

The doctor at the skilled nursing facility where Lois' mother lived told Lois and her siblings that her mother's condition was worsening, and they discussed the treatment plan, including advanced directives.

Lois and her mother were close, and it was excruciating for Lois to see her mother deteriorate over time.  Prior to the dementia, her mother had been very sharp and active, so it was especially difficult for Lois to watch the mother she knew slowly disappear.

She found support at an Alzheimer's support group, but she found her visits to see her mother increasingly difficult.

Knowing that her mother's life would soon be coming to an end, Lois knew that she would need more than her support group.  She needed the one-on-one support of a psychotherapist.

From the first therapy session, Lois felt understood and cared about by her therapist (see my article: The Creation of the "Holding Environment" in Therapy).

In addition to helping Lois cope with emotional pain of watching her mother decompensate due to Alzheimer's disease, the therapist also provided Lois with practical information. 

Lois felt fortunate that she found a psychotherapist who was so knowledgeable about loss, grief and the practical issues involved with having a family member who has dementia.

Little did Lois know that her psychotherapist also had a mother who was suffering with advanced Alzheimer's disease, and they were both going through a parallel process.

Lois' therapist wondered if it would be therapeutically beneficial for her to disclose to Lois that she was also going through a similar situation.  But she sensed, based on things that Lois told her, that Lois needed something different from her at this point in time--she needed to feel that her therapist was outside the world of Alzheimer's disease, nursing homes and hospitals.

As a result, her therapist decided that there would be no therapeutic benefit to disclosing her personal situation to Lois, so she kept it to herself.  She didn't want to impinge on Lois' experience.

Even though her therapist didn't disclose her personal situation to Lois, Lois felt that her therapist was present with her in a way that she had never felt before with her other therapists--as if her therapist really understood what Lois was going through--and this was healing for Lois.

Two months before Lois' mother died, her therapist called her to let her know that she would have to cancel their next two appointments because she had a loss in her family.  

When they resumed work together, Lois expressed her condolences to her therapist.  She didn't ask if the person who died was close to her therapist because she already felt overwhelmed by her own emotions.  Sensing that Lois didn't want to know, her therapist didn't divulge that her mother had just died from complications of Alzheimer's.

When Lois got the call from the nursing home that her mother died the night before, she was grief stricken.  All along she was grieving for the changes in her mother.  Somehow, she thought that, since she anticipated her mother's death.  She knew she would be upset, but she didn't think she would be so upset.

After their father died a few years earlier, Lois' siblings looked to her for advice because she was the oldest, and now it was no different with their mother's death.  They looked to her for guidance and emotional support, so Lois was glad to have her weekly therapy sessions so she could get her own emotional support from her therapist.

Lois resumed her therapy sessions a week after her mother died, and she was relieved to feel enveloped in the caring and empathetic environment that her therapist created for her (see my articles: Why is Empathy Important in Psychotherapy? and The Psychotherapist's Empathic Attunement to Unconscious Communication in the Therapy Session).  

Parallel Losses For the Psychotherapist and the Client

She could feel her therapist's attunement to her, and there were times in her sessions when she felt she didn't even need to talk.  It was enough to be there and feel her therapist's empathy.  

Aside from her advanced clinical training and experience, her therapist also had her own therapy that she relied on for her support through the grief process.  

Her therapist had many years of experience helping clients to cope with grief.  As she listened to Lois talk about her feelings, she recognized the parallel experiences between them.  She sensed the similarities as well as the differences in their relationships with their mothers and their experiences of grief.

Just as Lois found these therapy sessions to be healing, her therapist also had an internal experience of how healing these sessions were for herself.

Conclusion

It's not unusual for a psychotherapist and client who are working together in therapy to be having a parallel experience--whether it's about loss, happy experiences, personal relationships or any other experiences.

Most of the time, if the psychotherapist is skilled, experienced and can contain her own experiences with appropriate boundaries, the client can benefit from going through this parallel experience with the therapist--whether the client knows about the parallel experience or not.

There are times when even the most skilled psychotherapists must be aware of their own limitations and not take on certain clients because they are aware that they have a particular emotional vulnerability to whatever the client is going through and the therapy wouldn't be beneficial for the client.  Usually these instances are more the exception than the rule.

The therapist usually makes a decision on a case-by-case basis, depending upon the client's needs and the therapist's comfort level with disclosure, whether or not to disclose her own experience.  For instance, in substance abuse treatment, therapists often reveal their own history with substance abuse because this is an accepted practice in substance abuse treatment.

Psychotherapists' disclosure is a topic where there are many different views.  While the therapist is expected to be genuine and no longer expected to be a "blank screen" with her client, the decision to disclose personal information or not must be viewed in light of whether it would be of therapeutic benefit to the client and not solely for the therapist's benefit.

Getting Help in Therapy

Whether or not to start therapy can be a challenging decision (see my articles: Starting Psychotherapy: It's Not Unusual to Feel Anxious or Ambivalent and Psychotherapy and Beginner's Mind).

Finding a licensed mental health professional who is right for you is a process (see my articles: How to Choose a Psychotherapist).

When you and your psychotherapist are a good match, you can benefit from your work together in ways that might exceed your expectations (see my article: The Benefits of Psychotherapy).

The healing process in therapy can lead to emotional breakthroughs and a more fulfilling life.

About Me

I am a licensed NYC psychotherapist, hypnotherapist, EMDR and Somatic Experiencing therapist who works with individual adults and couples (see my article: The Therapeutic Benefits of Integrative Psychotherapy).

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.

See my other articles about Psychotherapy: My Articles About Psychotherapy.

When Someone You Love Has Alzheimer's - Part 2

Yesterday my blog article When Someone You Love Has Alzheimer's - Part 1 discussed some basic information about Alzheimer's disease and the Alzheimer's Association as a resource for support and valuable information.  Today I would like to discuss how to navigate family dynamics when family members disagree about elder care issues involving a loved one.

Making Decisions for a Loved One with Alzheimer's:

Making decisions for a loved one who has Alzheimer's can be one of the most difficult things that you and your family will ever have to do.

First of all, to accept that a mother or father (or other relative) who was once an independent and capable person is no longer capable of making decisions for her or himself can be heart wrenching.  But even after you've accepted this, you and other family members might not agree about how to proceed.  This can quickly lead to family conflict and degenerate into warring factions in the family, adding to an already very difficult situation.

The Alzheimer's Association:  Alzheimer's Organization
As I mentioned yesterday, the Alzheimer's Association, can be a wonderful resource for general information, but they can't make personal decisions for you about your loved one.  That's up to you and your family.

Getting a Diagnosis:
As I mentioned yesterday, Alzheimer's can look like other medical conditions.  It's a "rule out" diagnosis and a good place to start is with your family doctor.  Often, your family doctor will refer your loved one to a neurologist.

Important Elder Care Decisions to Make:
Once you have a diagnosis of Alzheimer's and you've obtained basic information from the Alzheimer's Association, it's often helpful to get an objective professional evaluation about your loved one's specific needs:

• Can s/he take care of daily activities of living (e.g., getting dressed, preparing meals, paying bills, etc). 
• Is it safe for your loved one to live alone?
• Is it safe for your loved one to continue to drive?

These are just some of the many questions that need to be addressed.

So, what do you and your family members do after your loved one is diagnosed with Alzheimer's?

Call a Family Meeting:
Rather than going it alone, I recommend calling a family meeting and discussing the important elder care issues that are involved when a family member has Alzheimer's.  Usually, an important decision is whether or not to involve the family member who has Alzheimer's.  A lot will depend on whether he or she is still capable of understanding what's going on.  If not, it might be more confusing than helpful to him or her.

Prepare for the Family Meeting:
Before the meeting, gather your thoughts and write down the main issues that need to be discussed.  You don't need to cover everything in one family meeting and, in fact, it can be overwhelming.  Unless the situation is urgent and you need to make immediate decisions, it might be better to plan a couple of meetings, if possible, so you don't wear yourself and others out by trying to do it all at once.

Stay Calm and Be Patient with Other Family Members:
Although this can be a very emotional time, especially if family members don't agree or if they're in denial about the Alzheimer's diagnosis, try to stay calm so you can listen to your family's concerns.  You might have overcome denial about your loved one's diagnosis, but it might take other family members a little longer to come around.  Try to be patient.

Get an Objective Professional Evaluation:
Once your loved one has been diagnosed with Alzheimer's by a medical doctor, you need to know what are his or her particular needs.  So, it's often very helpful to start with an objective professional evaluation about the particular needs of your loved one who has Alzheimer's.  Having an evaluation often helps families in the decision making process.

Consult with a Geriatric Social Worker:
Geriatric social workers evaluate the needs of a person with Alzheimer's disease.  They are trained to evaluate and make recommendations for the elderly.  You and your family can start by getting information through various geriatric social work websites, including:  http://caremanager.org.

• Make sure that the geriatric social worker you choose is a licensed social worker who is certified in geriatric care.  
• Ask questions when you call about the geriatric social worker's credentials, the fee, and what services s/he provides.  
• Before you go for the consultation, prepare questions in advance so you're organized for the meeting and use the time most effectively.
• The geriatric social worker can't make decisions for you.  He or she can only make recommendations after the evaluation, and then it's up to you and your family to make important elder care decisions.  
• A geriatric social worker can also help you to navigate through the confusing, bureaucratic morass of the health care system, whether your loved one is able to stay at home and get a home health aide or whether s/he needs to be placed in a nursing home.  S/he might also be able to recommend an elder care attorney so you can get a durable power of attorney or handle other legal issues involved.

Take Care of Yourself Throughout this Process:
People who go through this process often don't realize how stressful and frustrating it can be, even when there isn't family conflict about how to proceed.  It's easy to neglect yourself during this time.  So, it's important to take extra good care of yourself by eating well, getting enough sleep, and having emotional support.

You're Not Alone:
When you're faced with these difficult decisions and, possibly, your own conflicting emotions, you can feel very alone.  But, as the population ages, there are thousands of people going through what you're going through now.  You're not alone.  If you're able to attend a support group through the Alzheimer's Association, you could benefit from one of these mutual support groups.

Get One-on-One Emotional Support in Therapy:
Many people find it helpful to get objective emotional support in their own therapy while they're going through this challenging time.  It can be helpful to be in your own therapy to sort out your feelings about what to do.  It's one thing to have an objective recommendation and to know logically what to do, but it's another thing to handle it emotionally.

This is obviously a huge topic, which can't be completely covered in one or two blog posts, but if you're currently going through a difficult time with someone who has Alzheimer's, I hope these blog posts have been helpful. 

About Me

I'm a licensed NYC psychotherapist, hypnotherapist, EMDR and Somatic Experiencing therapist.  

I work with individual adults and couples.

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.

Photo Credit:  Photo Pin

When Someone You Love Has Alzheimer's Disease

One of the most difficult things to deal with in life is to watch someone you love deteriorate over time because of Alzheimer's disease.  Currently, there is no cure for Alzheimer's.  There are medications that can slow the progression of the disease, but they cannot stop it from ravaging the brain.  Since there is no cure, you can feel extremely helpless watching someone you love get worse and not being able to do anything about it.

Alzheimer's is a "rule out" disease, which means that other medical problems must be eliminated first in order for a medical doctor to diagnosis someone with Alzheimer's.  Over time, Alzheimer's causes memory loss, usually starting with short term memory and eventually progressing to long term memory.

In the early stages, it can be hard to detect because it can look like many other medical problems, which is why other disorders and diseases must be ruled out first.  As Alzheimer's progresses, it will eventually affect a person's ability to perform basic tasks, like taking care of themselves.  It will also, in the advanced stage, affect their ability to speak and walk.  People with advanced Alzheimer's often have poor judgment.  It affects mood, so the person often becomes irritable or loses his or her temper.

If you have a loved one that has Alzheimer's, you need emotional support.  Taking care of someone with Alzheimer's can wear you down.  It's painful to watch someone who was a very vibrant and capable person before Alzheimer's, deteriorate.  Your loved one might not even seem to be the same person that you've always known.  He or she might not recognize you and lash out at you.  At those times, you might feel very alone and need help yourself.

The Alzheimer's Association is a wonderful resource.  They provide support to caregivers on so many levels:  emotional as well as educational.  Participating in one of their support groups with other people who have loved ones with Alzheimer's can be very helpful.  Being around others who are going through what you're going through can be a tremendous relief, so you don't feel so alone.

The Alzheimer's Association also provides free meetings to help you with financial and legal questions. Elder care attorneys present legal information that affect people who have spouses, parents or other relatives with Alzheimer's.  In addition, the Alzheimer's Association has a virtual library online so you can educate yourself.

Also, see When Someone You Love Has Alzheimer's Disease - Part 2:  http://psychotherapist-nyc.blogspot.com/2012/09/when-someone-you-love-has-alzheimers_20.html. 

If you have a loved one with Alzheimer's, don't go it alone.  Contact the Alzheimer's Association near you and get support.

To contact the Alzheimer's Association, you can go to their website:  http://Alz.org.

About Me
I am a licensed New York City psychotherapist, hypnotherapist, EMDR and Somatic Experiencing therapist. 

I work with individual adults and couples.

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.

Photo Credit: Photo Pin