In the August/September AARP Magazine, there is an article entitled "The Missing". It begins: "When loved ones disappear--either physically or psychologically--the pain of their loss can lead to a crippling form of complex grief". They give six examples of situations that can cause this kind of grief:
A family member missing, like a missing child When someone is reported Missing in Action Losing someone to an act of terrorism, like 9-11, where remains are never recovered Natural disasters, like the enormous tsunamis that left so many missing Transportation disasters, like the missing Flight 370 AND--- Having a family member with dementia
The article says, "While the family and friends of missing persons deal with the stress of a loved one whose body disappears, the flip side can be no less traumatizing--the psychological erasure of self that occurs in cases of ... degenerative brain conditions such as Alzheimer's disease. This is the secondary primary type of ambiguous loss.... "goodbye without leaving"."
I wanted to hug the two authors of this article. Someone finally wrote about how difficult this is, instead of wondering why it even seems difficult to caregivers, since our loved ones are "still here". It's difficult because the person we knew and loved is not here any longer.
In January's Good Housekeeping magazine, there is an article about a young husband and father who lost his battle with early-onset Alzheimer's at age 37, only one year after finally being diagnosed at the Mayo Clinic. (It's really heartbreaking to read. It's hard enough to lose a spouse at the ages DH and I are, but I can't imagine having small children at the same time.)
I think this is a very important article to have in a national magazine, because it informs people that dementia is not just an "old people's disease". And it's not just "grandma forgetting things", but a very cruel disease that will take the life of anyone who has it.
I was very surprised to find these two articles in such widely-read magazines. But if any disease needs some extensive, realistic publicity, this disease certainly does.
Pauline Boss is, I believe, the researcher who coined the phrase "ambiguous loss" and has written about it extensively. Some of her work is available online. Several books and articles on Alzheimer's and caregiving have referenced her work and especially this special type of grief that we all share. Her work, BTW, started with service families for whom there were no remains.
I am so glad that this is becoming a mainstream topic. At one point I called Hospice, who have a large grief program here, inquiring about a group for ambiguous loss. They had never heard of it and only worked with people where death was involved. They suggested I start my own group. Well, no. I do not have the wherewithal at this time to take on a project of that scope, especially since it didn't sound as if they were interested in backing it. The Alzheimer's Assoc. group that I attend touches on it, but mostly I just hear, "You have to take care of yourself. What are you doing to take care of yourself?"
As I see it, there is a huge void for the ambiguous loss of Alzheimer's families. And, I am saddened that a group dedicated to grief as large as the one is in our community doesn't address it.
The counselor I am seeing, who has helped me more than 8 years worth of psychologists and social workers combined, is a Hospice Grief Counselor. She conducts individual grief counseling sessions, as well as group sessions, for family members whose loved ones have died. However, Hospice recognizes that the mourning and grief we as Alzheimer Spouses experience, follows the same pattern, and is as traumatizing as the actual physical death of a spouse. Through various assignments of tracking and chronicling my activities, thoughts, and feelings, she is helping me navigate through this grief process and the rebuilding of a single life, while still having a husband who is technically alive. It is a complex, difficult, heart wrenching experience, but she "knows her stuff". At this point in my journey, I would literally be curled up in a ball under the covers, and never come out of my bedroom if it had not been for her guidance and support.
7 years ago, when I started this website, the "unique issues" of Alzheimer Spouses had almost never been discussed. Through writing, speaking, attending conferences, magazine and newspaper publicity, and the efforts of all of my website members to raise awareness, our issues are much more to the forefront than ever before. Maybe it is time for us to direct our efforts towards raising awareness of the desperate grief we experience living in limbo, not widow/widowers,yet not husbands/wives, and the support we need from friends, family, and the grief counseling community. A project for The Alzheimer Spouse Website for the new year.
Thank you, Jan, for bringing these articles to our attention.
Today's New York Times contains a column by Frank Bruni, "Confronting an Ugly Killer," on the subject of Alzheimer's awareness. It focuses on some fictional and nonfictional portrayals of people with the disease. I have zero interest in reading or watching fiction about AD -- the real thing is more than enough for me -- but the column is very thoughtful. The comments are also interesting.
I don't know how to post the link but if you go to www.nytimes.com, you'll see Frank Bruni's name under the heading "The Opinion Pages."