Tuesday, August 18, 2009


Typically we associate grief with the death of someone. Liz Kubler-Ross gave us our five stages: denial, anger, bargaining, depression, acceptance.-or some facsimile thereof. . Now it is basic High School senior year-college prep psychology, but interesting the first time you learn about it. There are all kinds of death societies out there and all kinds of major grief EXPERTS.

Like what the hell makes a person a grief expert? Is it Someone who has had a whole bunch of first degree relatives die? If so I'm in. Is it someone who volunteers at a bunch of grief support groups? I guess I have done that too.
Is it someone who majored in Thanatology- the study of death. Somone who write lots of papers about it, Lots of travel to conferences and a whole bunch of clandestine narcissism in that low key empathy oozing.......(" I'm a grief and loss expert and I'm so so busy just got back from New Zealand and now I'm on my way to Germany to present at another grief conference).... Kind of way?
busy busy busy. You see the same thing in psychological trauma, lots of experts. Busy busy busy experts. I guess I have presented at a few conferences over the years.

I used to volunteer with the American Red Cross Years ago, I used to volunteer with various agencies around the country in an area that called Critical Incident Stress Debriefing. I think doing so much work in trauma and disaster was a metaphor for living through my mothers Alzheimer's. Disaster experts like to classify the psychological effects of disaster into various phases. shock, honeymoon, disillusionment and recovery- or some variation thereof. Lots of experts have said the same thing in different ways over the years. Basically if you have volunteered at more than one disaster you may get to call yourself an expert. You can start your own society and certification even. Lots of groups spring up.

Maybe Alzheimer's grief is like any other grief. We all grieve death in different ways. The pain and loss is universal. Depending on ones own ego strength every person copes in different ways. General mantra is you have to talk about it. You have to get through it. If you don't process it, will come back to bite you. So say the grief EXPERTS. Pretty darn easy to qualify and quantify grief right? Maybe not. The scientific data is astoundingly sparce. Perhaps that is why there are so many experts in the field. Pretty easy to validate something becouse it feels good, sounds right or seems intuitive. Believe me, I have even tried myself , see the US copyright office and my 1996 copyright on "Parental Rating Scale for Childhood Grief" Pretty sad I felt compelled to copyright something like that, must have been hanging around a lot of experts in a soft science. But it is all a process. I guess a lot of arrogance abounds when there are a lot of experts in a field. I still think it is that "busy busy I'm indispensible" clandestine narcissism abounding in the field.

Hence the term resiliency. Especially in kids. I always hated that word. We all grieve in different ways and at different paces. What I have learned over the years in hearing one horrible story of pain, loss, trauma abuse adversity etc sometimes 50 a week, , is that grief is a part of life. We revisit grief at different points in our lifetime. There is acute grief and then we go on ,one way or another. Sometimes things in life bring back acute stages and feelings of grief. New losses bring up old losses. You never really get over a significant loss. It changes you. The world changes. A few years ago Nietzsche used to be really popular. Nihilistic attitudes among the low key clandestine intellectual narcissist. Fred said, "What does not kill me makes me stronger." Not so sure on that. We get experience and wisdom, we call on it. when we confront our new losses. But lets face it loss after loss, we don;t feel stronger. Having a loved one with AD is a day to day loss after loss, maybe you get stronger and maybe you just go on. The concept of resiliency is trendy in the trauma and grief world, lots of experts and buzzwords now. We make ourselves feel better by discussing resiliency of the human spirit. Any caregiver living taking care of a person with AD, is an expert I think. An expert in pain and isolation, and expert in selflessness, maybe by default, but none the less an expert.

Alzheimer's is a living death, except we are too busy to grieve when we live through it. Moreover the isolative nature of being a caregiver further impedes any healthy grief process. As a caregiver, you must go on. Maybe you are stronger for it, maybe you are resilient, maybe you learn from it, you dig deep inside yourself for strength you did not know you had, You go on. You are resilient, but it sure does not make it feel any better.

So dear caregiver, no one can tell you how to grieve it day to day. But whatever it is to you: you will grieve. It is not right or wrong, it is human, and there are no bad grief feelings, maybe painful but not sinister. It does make sense to try to let people in, if only to mitigate the horrible isolation. Everyone trying to help you, (if you are lucky to have somone trying to help) is well meaning in one way or another. ( Even if they have more grief than you and they are trying to work it out through you. Grief support is good, use the template but make it yours. If you can talk about it, do it, if you can't, you are not doing it wrong, it's simply where you need to be. Keep doing your best. It IS good enough. Some days are sunny and some are cloudy. You will make it.

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Talking about the book with the Lake Superior wind....... a calm day