Dementia and Alzheimer’s disease, though different in definition, can each leave other family members with a deep sense of loss. Watching someone you have loved slowly lose your shared memories and become lost in familiar surroundings can be emotionally devastating. While others may sympathize with your loss, they rarely view it as a true grieving experience. This is yet another example of “disenfranchised grief.”
My wife and I have dealt with this first hand. My wife’s oldest sister suffered from early onset Alzheimer’s, my father was a victim of classic Alzheimer’s and my mother, though diagnosed with that disease, in reality, displayed symptoms more closely related to dementia. It was very difficult to watch each of them lose their memories, independence and sense of reality.
While there are wonderful organizations today that can help family members in understanding what to expect as these diseases progress, that was not always the case. When my parents began to fail in the early 1990’s, we moved them from Arizona to a home with a similar floor plan next door to our own. At the time, one of our local hospitals offered the only local Alzheimer’s support group, lead by its chaplains. We attended one meeting and were the only attendees. The leaders were appalled that we were not more upset with the situation and didn’t try to constantly draw my parents back to reality. Our response was that they both seemed far less agitated and confused when we “went with the flow” and simply talked to them in their reality of the moment. (This is actually what is now suggested to be the best way to support people suffering from these disorders.) The group leaders followed the now discounted “stages of grief” model and told us we were in denial! That was hardly the case and certainly not helpful. Never once did they address it as a grieving experience.
Grief is the normal and natural reaction to any change in familiar behavior patterns. When you move from the old role of being the child to having to “parent your parents,” that is certainly a major change! Alzheimer's and grief go hand in hand, as do dementia and grief. That was the case with my wife as well and she lost the old and familiar relationship she had previously had with her sister. As is always the case, if a problem is not properly diagnosed, it is mistreated. Recognizing that family members dealing with these diseases are grieving what they have lost is the first step in helping them better move through their emotional pain. No amount of sympathy from others really helps. More often than not, your friends will try and support you by giving you reasons why you shouldn’t feel bad about the situation. While those words are meant as comfort, they actually tend to cause you to suppress your feelings of pain, rather than putting voice to them. Alzheimer’s and dementia support groups can help relieve some of that isolation that comes with dealing with a family member that is suffering from these maladies, but again rarely offer direction on how to effectively deal with the emotional pain from which family members and caregivers suffer.
My wife and I both found the Grief Recovery Method to be an invaluable tool in moving through our losses. In this situation, it’s a two-part process.
First we had to deal with any grief we had experienced in our old relationships, prior to the onset of the disease. We had to deal with the grief associated with miscommunications from the past and those things we wished might have been different, better or more. Many of these things were relatively minor, but is often the small stuff that we fail to address that come back to steal away our fond memories as time passes.
I have used the example a seeing a flower garden in past articles to illustrate this. You see a beautiful garden and it reminds you of your mother’s gardens. It’s a fond remembrance filled with old and familiar images. Then you think about it and remember that your mother will never plant a garden like that again. You also remember that you took those gardens for granted and never told her how much you enjoyed them. Next you start thinking of other things that were left unsaid, and the other things you wish might have been different or better. You then begin to feel sad about the fact that the future is now going be different from what you had expected. Ultimately that fond memory of that garden is overshadowed by the “unfinished business of which you have been reminded.
The design of the Grief Recovery Method helps you identify, not only the large issues that might have been problematic in your old relationship, but also these less dramatic, but also highly important moments to which you feel the need to voice.
The next step in this process involves any grief associated with your “new’ relationship with that person, based on the progression of this illness. Moving from being part of a sharing relationship to becoming a caregiver is fraught with emotional pain and grief. Even if you are not in the caregiving role, watching someone you cared about slowly change and slip away from you is filled with feelings of grief.
There is a tendency to stuff all of these feelings inside, because you don’t see any alternative. The Grief Recovery Method offers a clear and positive opportunity to address these feelings in such a way as to offer emotional release. Taking this action can be freeing. It also places you in a far better position to deal with each new problem as it happens. When you are not overwhelmed with past issues in your relationship with someone who now depends on you to get through each day, you have more energy and clarity to face each new challenge.
Taking this action does involve some effort
It would be wonderful if someone could touch you with a magic wand and make all of this happen in a single moment. Unfortunately there is no such wand. You might think that taking medication would make you “better.” While a pill might make you feel better in that moment, when it wears off, all of that emotional pain is still there with you.
Taking Grief Recovery Action does involve some effort. A Certified Grief Recovery Specialist can help you move through this process. “The Grief Recovery Handbook” spells out all of the necessary steps that you will need to take to be successful in moving beyond the power of the emotional pain that comes with both watching and living with the devastating changes brought on by these diseases.
Perhaps the best motivation for taking this action comes down to asking yourself a simple question. Who do you need to be there for? You need to be there to help someone you love cope with all of the changes they are facing due to these diseases. If you are overwhelmed with your own pain, how can you be emotionally available to help them to the best of your ability? By taking recovery action for yourself, as you try to support them, you will be a far better support person!
Dementia, Alzheimer’s and grief come as a package. My wife and I both used The Grief Recovery Method to help ourselves as we dealt with the issues faced by her sister and my parents. Not only did it help us to be better caregivers, but it also made it possible to better enjoy our fond memories, rather than just thinking of these people as they changed from who they once were. We now live with memories of who these people were to us in life, rather than being overwhelmed with how they died.
Photo Credit: 123RF Stock Photo
Second Photo also from 123RF Stock Photo
stephen moeller, grief recovery specialist
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