The Whitworths of Arizona, bringing science to you in everyday language.

Friday, March 1, 2013

Grieving a LBD Diagnosis

Anytime a family member receives a diagnosis of a degenerative disorder, there will be grief. You grieve for the life you hoped to have and can no longer expect. You grieve for the future ahead of you. This will be an ongoing process, sometimes more severe than others, from now on.

Grief about a degenerative disorder like LBD can be seen as a seven-step process :

Shock. This initial paralysis blocks feeling and allows you the time you need to recover and move on. This is usually very short lived—only an hour, or a day or so.

Denial. You begin to have feelings again, but block out the possibility of the disorder. Denial gives you the time you need to adjust. It is nature’s way of letting in only as much as you can handle. You resist the diagnosis. “Surely it is wrong. I can’t have this. My loved one can’t have this.” Some people stay in this step. Family members who aren’t living with the disorder day by day, for instance, are notorious about not being able to move past denial.

Anger. The value of anger is that it gives you energy to move on, strength to face this difficult event in your life. You are beginning to accept the reality of the diagnosis and you rail against it. “Why me? Why my loved one?” For some, this is the most difficult part of the grieving process because anger is an acceptable feeling for them. “How can I feel angry at God? At my loved one? At whatever….  Why am I angry all the time? I used to be a very nice person and now I’m a shrew.” Anger is a natural part of the grief process. Repressing or bottling it up will only make you feel worse. The more you let yourself express it, the sooner it will pass.
Anger is another step that distant family members may get stuck in. Expressing disapproval and anger at the way their loved one’s situation is being handled by someone else may be their way of participating—not a very helpful way, but nevertheless, more common than we’d like to admit. For an extreme example of this read Going Mad, by Carol Pendergrass, available in the LBD Book Corner.*

Bargaining. “OK, I believe the diagnosis but there must be something I can do, we can do, something someone can do to change it, to bring back the life we had.” You are seeking in vain for a way out.

Guilt is a close companion of bargaining. It is a way of trying to maintain control of the past. “If only I’d….,” “We should have….,” “Why didn’t I….,” are all useless recriminations about the past. What is, is. Guilt can’t change it. It just adds stress to an already stressful situation.

Depression. The final realization of the inevitable. “Yes, the diagnosis is true. My life is over, done. Why bother.” Situational depression is a natural short-term response to any loss and this is definitely a serious, ongoing loss. However, depression is also a LBD symptom and so the depression may become clinical. That is, it may last longer and may need to be treated. There are some Lewy-safe medications for chronic depression.

Testing. As you come out of your depression you may find that you are looking for more realistic answers. ”OK, this is the life we have. What can we do to make it better, to make it tolerable, to make it enjoyable again?” And there are answers to those questions, such as good nutrition, exercise and decreasing stress.

Acceptance: This is what you’ve been aiming for. It does not mean that you believe everything will be all right, or even that it will be the same ever again. It does mean that you’ve found a way to move forward, to continue to find meaning in the life you’ve been given.
Acceptance allows you to release the energy and power you were using for denial, anger, guilt or self-pity and use it to move on, to take advantage of the testing you did. “Life is still worth living. I can do this.” Take a breath, relax a little.

As humans, we all cycle through these steps more than once, often changing their order, skipping one, feeling stuck in another. You may find yourself angry and then accepting, and then in denial and then feeling guilty, and then angry again, etc. Just knowing that it is a natural process will help you go through it more easily, although perhaps easily is not the right word. Grieving is never easy, but it IS necessary. The alternative is to be stuck in one of the steps and that is more painful in the long run. Yes, it is painful to feelings of loss, but then you can let them go and move on.

Because LBD is a degenerative disorder, anyone involved with it will continually be dealing with new losses and new feelings that have to be processed. You will find yourself going through these grief steps over and over. However, as you learn the process, you may find it will take less time and you will be able to stay in acceptance longer.

*The LBD Book Corner is on our website:

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