"Preserving Your Memory" is a free magazine that often has good articles on dementia. The current issue has an article on dealing with loss that is worth reading. Though it's about dealing with losses when your loved one has dementia, I think the article applies to dealing with losses when your loved one has any sort of medical condition or when you are dealing with any sort of medical condition.
Here are some of the key points made in the article:
* We "now rely more on what we call the âdual process modelââwhere a grieving person tries to live life in the new reality while at the same time coping with a sense of loss..."
* "Grief is not about death, but about loss."
* "If grief is the conflicting feelings caused by the end of or change in a familiar pattern of behavior, then any changes in relationships with people, places, or events can cause the feelings we call grief."
* The ambiguity of caring for a living, breathing person while grieving the loss of that personâs former self can be overwhelming and confusing.
* Anticipatory grief. In this phase, caregivers grieve in the face of the disease and brace for whatâs to come.
The article offers some "tips for healthy grieving."
Robinhttp://www.alzinfo.org/wp-content/uploa ... nter12.pdf
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Loss: The relationship between dementia and grief is a complicated one.
Preserving Your Memory (Magazine)
"The risk of love is loss, and the price of loss is grief. But the pain of grief is only a shadow when compared with the pain of never risking love."
-- Hilary Stanton Zunin
Elisabeth KÃ¼bler-Ross brought the subject of grief into the mainstream with the 1969 publication of her book, On Death and Dying. More than four decades later, KÃ¼bler-Rossâ five stages of grief (denial, anger, bargaining, depression, acceptance) are still used by many people as a way to categorize the complexity of loss.
However, contemporary grief experts say thereâs much more to the storyâespecially when the grieving swirls around memory loss.
âThe KÃ¼bler-Ross model was an interesting idea 40 years ago, but we now rely more on what we call the âdual process modelââwhere a grieving person tries to live life in the new reality while at the same time coping with a sense of loss,â explains Dr. Kenneth Doka, professor at the College of New Rochelle, senior consultant to the Hospice Foundation of America and author of several books, including "Living with Grief: Alzheimerâs Disease."
âGrief is not about death, but about loss,â he says. âAnd every grief is unique.â So the resulting range of emotions varies greatly, not just from person to person but even in the same person at different times.
Memory Loss Changes Everything
The multi-faceted grief experience is even more complicated for individuals coping with Alzheimerâs disease (AD) or other forms of dementia, since there are elements of loss that occur prior to the physical passing.
In "A Loving Approach to Dementia Care: Making Meaningful Connections with the Person Who Has Alzheimerâs Disease or Other Dementia or Memory Loss," author Laura Wayman addresses the way caregivers and loved ones can feel bombarded with grief from the earliest stages of AD. She writes, âIf grief is the conflicting feelings caused by the end of or change in a familiar pattern of behavior, then any changes in relationships with people, places, or events can cause the feelings we call grief. If you are caring for someone with dementia, you are continually losing pieces of your loved one.â
Dr. Pauline Boss agrees. A clinical psychologist based in St. Paul, Minnesota, Dr. Boss is the author of the books "Ambiguous Loss: Learning to Live with Unresolved Grief" and the recently published "Loving Someone Who Has Dementia: How to Find Hope While Coping With Stress and Grief." She insists that loved ones of AD patients experience the definitive form of ambiguous loss: the type of loss that cannot be clarified or verified.
âWhen someone is struggling with memory loss, the person hasnât died but is drastically changed from who they used to be,â she says. âThe caregiver is living with somebody who is here but not here; who is legally the person they used to know and love but psychologically no longer that person.â The ambiguity of caring for a living, breathing person while grieving the loss of that personâs former self can be overwhelming and confusing.
Making matters worse, she says, is the lack of ritual surrounding the passing of memory. âWhen thereâs a death in the family, itâs verified with a death certificate and ritualized depending on culture and religion,â Boss notes. âWith memory loss, you donât have that. There are no sympathy cards, no rituals to support the people who are still here.â So-called âsurvivorsâ are left alone in their grief because the person theyâre grieving is still with them.
âCaring for a person with Alzheimerâs disease is often a series of grief experiences as you watch memories disappear and skills erode. Initially, this process can go unnoticed until difficulties impact more areas of daily life and the disease can no longer be denied. For both caretakers and their loved ones, this often produces an emotional wallop of confusion, anger and sadness. If left unchecked, these feelings can last throughout a caregiverâs long journey.â
Phases That Come and Go
Because the nature of grief is different for loved ones of AD sufferers, it arrives in stages and appears long before the personâs death. Like all patterns of grieving, there is no one sequence or chronology. However, there are three phases that many caregivers experience along the way:
Emerging grief. This form of grief might appear in the early stages of the disease, perhaps even prior to any official diagnosis. Loved ones who are noticing subtle variations in behavior can experience sadness, confusion and other emotions upon realizing that incremental changes are taking place. Dr. Ross points out that this is one of the most ambiguous stops along griefâs journey, as the loss is unclear and ill-defined.
Anticipatory grief. In this phase, caregivers grieve in the face of the disease and brace for whatâs to come. Dr. Doka notes that anticipatory grief can be profound with dementia cases. âLoved ones grieve shared memories, shared lives, the loss of what the patients can no longer do, the changing nature of their personalities,â he says. âPeople experience multiple losses along the way.â
Acute grief. The final stage of grief can begin in the final phase of the patientâs life, which can be agonizing for loved ones to witness. Then, once death occurs, new iterations of grief can take hold. Some caregivers even experience guilt at this step, questioning their own conflicted feelings of sadness and relief that the âlong goodbyeâ is finally over.
Sufferers Also Suffer
Itâs important to remember that individuals suffering from dementia are also grieving the loss of their former selves. In the early stages of their disease, they are aware that their cognitive function is changing. The fear and anxiety they experience are forms of anticipatory grief, explains Dr. Doka. As things progress, they often display signs of uneasiness. Caregivers and family members should be sensitive to the fact that everyone touched by memory loss experiences grief.
In his moving collection of essays written after his own diagnosis, "Alzheimerâs from the Inside Out," AD patient Richard Taylor offers a first-hand perspective on memory loss. In this excerpt, he addresses the subject of grief:
What living with the disease means to me â¦ is having to die twice in front of my family. First comes the death of who I am, and second is the death of who I will become. It means having to become an almost helpless observer of the deterioration of my relationships with loved ones. It means not remembering what I said, what I meant, and what you said or meant. I have moved from forgetful to confused to bewildered; I am floating between and within the three states, and I donât know why or how or when it is going to change.
Tips for healthy grieving
There is no right or wrong way to grieve. Just as each personâs life is unique, each personâs path through grief will be individualized. In the face of dementia, the process tends to be longer and more complicated, as it begins well before death. Do whatever works for you at every step along the way.
Honor each small passing.
Dr. Boss recommends creating a ritual to say goodbye when another part of an AD patient is gone. âConsider having a small ceremony with friends or family each time something new disappearsâsuch as the ability to talk or walk or eatâas a way of formalizing that passing,â she says. âLight a candle, plant a flower or send a paper crane out to sea.â
Acknowledge your grief.
Dr. Doka cautions against denying such intense emotions. âGrief is okay. Itâs normal. Itâs natural to have it,â he says. âGrief can be very complex and very stressful.â The first step in coping with it is acknowledging it, whether youâre in the early or later stages of the experience.
Dismiss the myth of closure.
The grieving process never truly ends, although it becomes less intense with time. Donât pressure yourself with the expectation that youâll reach a point of complete acceptance of your loved oneâs passing. Just do what you can to address your changing emotional needs as you go through your personal stages of grief so that you can live more comfortably with the loss.
Support can come in many forms and can offer a multitude of advantages to people dealing with loss. Wherever you are in your caregiving and grieving journey, make sure you get the help you need to lighten the emotional and physical load. Individual therapy and support groups can provide an invaluable source of empathy when you need it most. Visit ALZTalk.org for online support.
Caregivers need care, even when their caregiving days are behind them. Be kind to yourself, take good care of your own health and surround yourself with friends and family. Dr. Boss counsels grieving people to do what she calls âboth and.â You "both" remember your loved one "and: you move forward with your life.