Battling Alzheimer

Dear Caregiver,

Thank you for the sacrifice that you make to care of me.  Thank you for preparing my meals, driving me to doctor’s appointments and keeping me safe.  Thank you for keeping me clean and for handling my financial affairs.  Thank you for trying to make me a part of family activities and thank you for the gifts you give me, even though you are not sure that I know it’s a special day.

This disease has taken much from me.  So, I can’t explain things like I used to. But just because I can’t talk doesn’t mean I am not grateful.  Often when you look at me there is a distant look in my eyes.  It’s those time that I am most afraid.  I fear that caring for me will wear you out.  I fear that I am a burden to  you.  I fear you’ll throw up  your hands and give up.  I fear this prison in which I am trapped.  And yes, I fear death.

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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.

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  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

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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.

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