Battling Alzheimer

Warning:  If you believe in God then you might find these thoughts contrary to your beliefs.

Another Warning: If you don’t believe in God then you might find these thoughts contrary to your beliefs. 

There are some events that make us question humanity in general, like Josef Fritzl, who held his own daughter captive for 20 plus years, fathered seven children by her, killed one and then raised three of them as his grandchildren.   We shake our collective heads and wonder why people have taken to shooting at high schools and colleges across our nation.  The latest shooting early Wednesday morning, April 30, 2008, at Florida Atlantic University has the school on lockdown.  These are horrible events, but for most of us, they are distant.

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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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