Is prolonged grief a mental disorder?

June 1, 2009 by  
Filed under DEPRESSION

Resource post for June

heart_of_daisiesIt can happen to anybody – losing a loved one – a child, a partner/spouse, a sibling, a parent. We grieve because grief is an extension of our capacity to love as human beings. But after some time we have to move on and carry on with our lives. The intensity of grief lessens, the pain starts to heal. But what if it doesn’t?

There are cases when grief just wouldn’t go away and remains unresolved for months, and even years. This what experts call Prolonged Grief Disorder (PGD) or Complicated Grief.


It seems that PGD is a form of depression associated with bereavement. The feelings of grief of people with PGD extend six months or longer after the bereavement (“separation distress”) and can manifest in cognitive, emotional and behavioural Symptoms.

According to the Grief-Healing Support Group, PGD is characterized by the following symptoms:

Those suffering from PGD become socially withdrawn and suffer not only from poor mental but also physical health outcomes.


Studies have shown that 10 to 15% of people who have experienced bereavement suffer from PGD, and become severely depressed or even suicidal. In African Americans, the incidence pf PGD is even higher – up to 21%.


It has only been recently that PGD was recognized as a psychiatric disorder in its own right. With it came also possible therapies and treatments that can help the patients. There are those who believe, however, that grief shouldn’t be “medicalized” or “labelled as a disorder.”

The table below gives an overview of the treatment strategies for PGD (source:

Treatment Strategies

Learning to be mindful Buddhist teachings and meditations talk of mindfulness and how we can pay attention to our life in the moment, with intention and without judgement. Echhart Tolle teaches us to have a pain free life by living fully in the present –The Power of Now – a guide to spiritual enlightenment
Managing Stress Managing the fight-or-flight response. As we have to deal with one of life’s greatest stress events we are aslo encountering other grief related as well as normal life stressful events and situations
Solving Problems A simple yet structured approach to identifying issues, searching for options and working on possible solutions
Setting Goals Even at times of great pain there are things we may want or need to achieve in life. It may be to reduce our current levels of pain, or to become financially secure
Managing Emotions and Anger We may feel that our emotional responses are out of our control. However, there are some strategies we can use to control emotions and make life easier for ourselves and for others
Relaxation Techniques Some of these ideas may help you to relax. How relaxed are you at the moment? What is your mind doing? Where are your thoughts? What is your body doing?
Dealing with Conflict There are different levels and degrees of conflict. The grief period is a time of mixed and difficult emotions, consequently we may become more susceptible to conflict situations
Scheduling Enjoyable activities We have just lost someone very close to us, perhaps our partner or companion. It is important that we now schedule to do something that will bring us joy and fill some of the space
Improving Sleep A good sleeping pattern is crucial for normal healthy functioning. Are you getting adequate and restful sleep?
Understanding Anxiety A feeling of dread, fear, or worry. We all experience anxiety at some time or another, but when anxiety becomes too severe it can interfere with everyday functioning

 Remember, it is normal to grieve but when grief becomes prolonged and rules your life, then it’s time to seek professional help.depression


Photo credit: stock.xchng

Alzheimer’s, God and Me

April 30, 2008 by  
Filed under ALZHEIMER'S

WarningIf you believe in God then you might find these thoughts contrary to your beliefs.

Another Warning: If you don’t believe in God then you might find these thoughts contrary to your beliefs

There are some events that make us question humanity in general, like Josef Fritzl, who held his own daughter captive for 20 plus years, fathered seven children by her, killed one and then raised three of them as his grandchildren.   We shake our collective heads and wonder why people have taken to shooting at high schools and colleges across our nation.  The latest shooting early Wednesday morning, April 30, 2008, at Florida Atlantic University has the school on lockdown.  These are horrible events, but for most of us, they are distant.

However, there are some events, much smaller in scope, that never make the news, but they are events that shake us to our very core.  They shake us to the point that we end up questioning and challenging beliefs that we have held on to for years.

For me, my mother’s Alzheimer’s disease was that event. Up to that point I considered myself to be a strong, creative, independent woman.  I knew what I believed and although I had faced difficulties in my life, I was crystal clear about issues of faith.  I was so clear that I found it hard to understand why others weren’t as clear as I.  Maybe I was even a little harsh (in my thoughts) towards those who didn’t have their beliefs all together in a neat little package.

But an interesting thing happened.  As I watched my mother decline through the various stages of the disease; I realized that I had absolutely no control. I didn’t have any before that either, but her decline just made it more evident.  More than that, I realized that whoever was in control (it was God for me) could just do whatever He wanted, whenever He wanted and how ever He wanted.  THAT was not a good feeling for me.  It was a very long journey and in this case, I think the journey was as important as the destination.  So, here is what I learned by questioning.

God (or whoever you have your faith in) must be big enough and wise enough to handle your questions.

In the end, for me, pain must have a greater purpose (thus my writing of this blog).

What you believe about pain, suffering and death really impacts how you live.

The only faith that can’t be shaken is faith that has already been shaken

As Alzheimer’s patients decline, perhaps, the inner/spiritual world is all they really have.

So, what do you think?  Do your spirituality, faith and beliefs play any role in your perspective?  Share your thoughts and your journey. Leave a comment here or send me a private note.

How Alzheimer’s Patients Grieve

April 9, 2008 by  
Filed under ALZHEIMER'S

For the last two days, I’ve talked about grief.  On Monday, I summarized and gave an introduction to caregiver grief and on Tuesday, I discussed specifically how Alzheimer’s caregivers grieve.  The premise of both posts was that grief occurs because of loss, not only because of death.  Therefore, as relationships, roles and responsibilities shift while the affected person progresses through the stages of Alzheimer’s disease, it is natural for the caregiver to begin grieving WHILE the person for whom she is caring is still alive and “well.”

There is a significant body of research on grieving, the stages of grief, caregiving and caregiver grief.  There has been much less research done on the how the Alzheimer’s patient grieves.  Part of the problem is that as the disease progresses, the affected person’s ability to articulate diminishes.  Thus, the opportunity is lost for the patient to express his or her feelings and frustrations with what is happening.  Another issue is that caregivers become so overwhelmed with day to day activities and problem solving that they don’t stop and think that as they are grieving, so is the one for whom they are caring.

Yet, we must STOP and think.  If it hurts us to see our loved ones “losing it,” how much more does it hurt them?  At first, they may dismiss the symptoms as stress, senior moments or just plain forgetfulness.  As time progresses and they realize that they are not getting any better, they must get very afraid.

Imagine how you would feel if you were to all of a sudden get lost going someplace you have been going for several years?  What must it be like for your children to tell you its time to stop driving?  What if you woke up and a “stranger” came into your room to help you get ready for the day? 

We don’t know a lot about how the Alzheimer’s patient grieves, but we know that grief is related to loss and before the Alzheimer’s patient loses his memory completely, he KNOWS that something is desperately wrong and he grieves the loss of his status and independence.  He grieves the loss of his position in the family.  Because the disease progresses s-l-o-w-l-y over a number of years, the affected person has time to feel the pain and recognize that things are different.  The family may have chosen to share the diagnosis and so he knows what is coming next, or he may not be aware of the diagnosis. 

So, as you navigate the waters of caregiving, assure your loved one that you will always be there.  Give him lots of hugs and smiles.  Remember, just as you grieve, your loved one is also grieving.  To what extent will depend on how early the diagnosis was made and whether or not the family shares the details of the diagnosis.  Either way, your loved one will certainly experience denial, anger, bargaining, depression and acceptance.  For the person affected with Alzheimer’s disease, “acceptance” may be more of a resignation that he has no control over what’s happening, than a conscious understanding the reality.   His feelings and emotions are compounded by the physiological changes in his brain and the resulting confusion and forgetfulness.  Hold him, love him, touch him and reassure him that you will be there to help him through this time.

How Alzheimer’s Caregivers Grieve

April 8, 2008 by  
Filed under ALZHEIMER'S

  I talked with a friend yesterday. She could relate to the paradox of caregiver grief.  Being sad, on one hand, as she watches the disease slowly takes her mother away and on the other hand, being grateful that she still has her mother and is able to connect with her, from time to time. The conversation reminded me that caregiving and grief tend to go hand in hand; because caregiving usually causes a role-reversal, or at best a shift in previously established roles.  Yesterday, I talked about the fact that caregivers begin greiving while their loved ones are still alive. Today, I’ll talk about HOW caregivers grieve.

You have probably heard of Elizabeth Kubler Ross.  Regarding end of life issues, she was the uncontested expert.  She started out studying those who were diagnosed with terminal illnesses and she looked at the ups, downs, phases and stages they experienced.  Eventually, she discovered that those who have lost a loved one experience the same stages.  It is now widely accepted that the stages of grief that she described are applicable to grief associated with a myriad of losses.  With that foundation, let’s look specifically at caregiver grief that begins prior to the death of person receiving care

The word stage is a bit of a misnomer, in that it implies that you neatly move from one to the next and then to the end.  That is NOT the case with grief, rather you move in and out and back and forth through the stages. It’s not neat or clear cut, but at least you can put a label on what you, as a caregiver are experiencing, as you grieve while your loved one still lives.

Denial-“I can’t believe this is happening!”  You just cannot wrap your reality around the fact that your loved one is losing the battle against the monster, Alzheimer’s disease.  A part of you believes and holds on to the fact that, “we’ve had hard times before, everything will be just fine.”

Anger-this is when you come to the harsh reality that everything is not fine and you don’t like it at all.  I remember I wanted to punch someone.  I wanted someone to pay for and explain this horrible thing that was happening. Your anger can be directed at the affected person, your spouse or children, other family members, anyone in your path or even God Himself.

Bargaining-You know you are trying to strike up a bargain when you are willing to put your elderly and frail loved one through a barrage of uncomfortable tests or into a clinical study that clearly won’t provide relief; or when you scour the internet and medical journals searching for new treatments and go to specialist after specialist looking for the “cure.”

Depression-Now you get it.  Your reality is that your loved one is very sick and is going to ultimately lose the battle against Alzheimer’s disease.  As a caregiver you may get physically ill yourself, you may cry a lot, seemingly for no reason.  You may socially and spiritually isolate yourself and pull away from friends, family and your faith for a while.

Acceptance-I’d love to have a conversation with Mrs. Kubler Ross on this one. I mean, acceptance has a bit of a positive ring to it.  We accept the illness and the impending death because we don’t have a choice, not because it’s an Emmy award that we have long coveted.  At any rate, our minds and breaking hearts eventually come to grips with the fact that, “there is a time to die.”

Again, the paradox here is that you are going through all of these stages while you go about the business of caregiving.  While your loved one is alive and with you; it feels strange and wrong, but in truth, its right.  Grief, at its core is about acknowledging a loss and even though your loved one is still alive, the relationship is changing and you are losing your loved one.  Denial, anger, bargaining, depression and acceptance are your heart’s response to the losses you are experiencing.

Tomorrow, I’ll talk about the grieving Alzheimer’s patient.

Alzheimer’s Disease and Caregiver Grief

April 7, 2008 by  
Filed under ALZHEIMER'S

There is no getting away from it, battling the monster, Alzheimer’s disease causes grief on a number of different levels.  It’s extremely complicated, but it’s also necessary to acknowledge and work through.

Alzheimer’s related caregiver grief begins long before the affected person gets near death.  That in and of itself is problematic because you may feel guilty for grieving when your loved one is still alive and maybe not even near death as yet.

The first thing to remember is that grief is not just related to death, it is related to LOSS,  and as the disease progresses it is clear that you are experiencing some significant losses.  You may grieve the loss of the original relationship.  Roles are often reversed or at least revised.  Children and grandchildren take on the role of  parents.  Sometimes spouses, who were once on equal footing- slowly see a metamorphosis whereby one takes on a more protective and “in charge” role.  While the affected one, in the initial stages, may or may not readily accept the change in roles.  This loss of relationship as you know it is reason to grieve.  Yes, your loved on is still alive, but it’s not the same. 

I remember crying on Mother’s day and feeling horribly about it because my mother was still alive.  I’m ashamed to say it, but that’s not the mother I wanted.  I WANTED MY MOTHER.  Yes, I was grateful that she was still alive, but I wanted her alive in her fullness.  I wanted her to be able to laugh with me. I wanted to see that twinkle in her eye and hear one of those quick little quips. I wanted us to cook late into the night and talk later into the night.  So, for years, I grieved the loss of our relationship while she was alive. And honestly, I beat myself up a lot because I didn’t understand it.

Please, give yourself a break. If you can understand that grief is related to loss and not only death, then you can give yourself permission to grieve the losses that you are experiencing.  I would say this though.  Try to strike a balance.  Give yourself permission to grieve, which is normal.  At the same time, be grateful that you do still have your loved one, even if it’s not on your terms. 

How to grieve while your loved one still lives

  1. Take time to explore your feelings.  It’s okay to cry and be angry.
  2. Understand that what you are feeling is normal.
  3. Talk about what you are feeling with a trusted friend or counselor.  Consider keeping a journal.
  4. Know that your grief won’t end per se, it will however change faces as the illness progresses.  Give yourself time.
  5. Celebrate the positive and hold on to your good memories

Most of all be patient with yourself and know that even if your loved one can’t say thank you. Your gift of caregiving is appreciated.

The Defining Moment

March 3, 2008 by  
Filed under CANCER

Like a Snoopy cartoon, the teacher is speaking to you, but it sounds like white noise as your mind comes to grips with–the diagnosis.

The diagnosis becomes a turning point.

Elizabeth Kubler-Ross’s five stages of grief from her 1969 book, On Death and Dying, explains the stages which apply to any life changing event, including the diagnosis of cancer. The stages are not simply about death, but reflect the loss of life as you know it.

1. Denial–refusal, either conscious or unconcious to accept the facts

2. Anger–at self or others

3. Bargaining–compromising with others or a faith system

4. Depression–a period of sadness, fear and regret

5. Acceptance–dealing with the facts

The important thing is not how you move through the stages, but that you continue forward momentum. That momentum is individual, bringing you to a place of coping and to a place of re-evaluation.

Walking out into the sunshine after the defining moment you may be struck with amazement that the world goes on. The clouds continue to aimlessly float by and the birds are still chirping in the trees. Nothing has changed, and yet every single thing has forever changed and will never be the same again.

While diagnosis is a defining moment, only you can decide if and how it will define you.

I have observed a unique phenomenon over the years–patients diagnosed with cancer who make a very personal decision to hide the diagnosis from anyone outside a very select circle of perhaps only one or two people. They generally only reveal the information if it becomes necessary.

I was on the support team of a mail carrier who came to our facility for in-patient treatment. He tooks large chunks of accumulated vacation time for each cycle of his chemo and recovery. This continued for several rounds of chemo, and in the course of my interaction with him he shared that no one at his place of employment knew of his cancer diagnosis. He had not only accepted his diagnosis but he was determined his diagnosis would not define him.

I’ve thought about this often.

Does diagnosis define you? Are you your diagnosis?

Does the world treat you different once they know you have cancer? Do those you once interacted with change as they become unable to cope with your reality? Is it fear of loss or confrontation with their own mortality? Perhaps it is both.

Once the point of acceptance is reached it is your choice how you will deal with the diagnosis. As a caregiver, friend, loved one or family member, I believe it is merely our responsibility to respect that decision.

A final thought. Do you treat you differently? Have your priorities shifted outside of the diagnosis? Once you reached that moment of acceptance how did you begin to see the world around you? Defining moments tend to be the sifters and sorters of life. People and events trickle throught the sieve and everything is re-evaluated.

Related Posts with Thumbnails

NOTE: The contents in this blog are for informational purposes only, and should not be construed as medical advice, diagnosis, treatment or a substitute for professional care. Always seek the advice of your physician or other qualified health professional before making changes to any existing treatment or program. Some of the information presented in this blog may already be out of date.