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.
Yet, we must STOP and think. If it hurts us to see our loved ones “losing it,” how much more does it hurt them? At first, they may dismiss the symptoms as stress, senior moments or just plain forgetfulness. As time progresses and they realize that they are not getting any better, they must get very afraid.
Imagine how you would feel if you were to all of a sudden get lost going someplace you have been going for several years? What must it be like for your children to tell you its time to stop driving? What if you woke up and a “stranger” came into your room to help you get ready for the day?
We don’t know a lot about how the Alzheimer’s patient grieves, but we know that grief is related to loss and before the Alzheimer’s patient loses his memory completely, he KNOWS that something is desperately wrong and he grieves the loss of his status and independence. He grieves the loss of his position in the family. Because the disease progresses s-l-o-w-l-y over a number of years, the affected person has time to feel the pain and recognize that things are different. The family may have chosen to share the diagnosis and so he knows what is coming next, or he may not be aware of the diagnosis.
So, as you navigate the waters of caregiving, assure your loved one that you will always be there. Give him lots of hugs and smiles. Remember, just as you grieve, your loved one is also grieving. To what extent will depend on how early the diagnosis was made and whether or not the family shares the details of the diagnosis. Either way, your loved one will certainly experience denial, anger, bargaining, depression and acceptance. For the person affected with Alzheimer’s disease, “acceptance” may be more of a resignation that he has no control over what’s happening, than a conscious understanding the reality. His feelings and emotions are compounded by the physiological changes in his brain and the resulting confusion and forgetfulness. Hold him, love him, touch him and reassure him that you will be there to help him through this time.