Saturday 27 July 2013

Do People With Alzheimer's Disease Suffer?

Life cannot grow without challenges; and pains, miseries, sufferings bring challenges. You cannot become aware without suffering. Suffering evokes awareness in you- Osho

I know this is a huge question and one that is not easily answered. It is different for everyone and I can only share my experience with working with people who have Alzheimer's disease and dementia. I have also thought about this question from a personal perspective, as my mother-in-law, Jessie, experienced the disease.

I thought it was appropriate to ask this question, since in my previous post I talked about having compassion for people who are suffering. After I posted it, I started to think that I don't want people to get the message that all people with Alzheimer's disease suffer and that this suffering happens all the time. I also can only share my thoughts from an observers perspective, as I don't personally have Alzheimer's disease and therefore can't really know what it's like. David Hilfiker in his blog, Watching The Lights Go Out, shares some powerful insights about his experience of living with Alzheimer's disease.

While I don't want to over simplify suffering, I think it's helpful to think of it in three areas: the spiritual domain, the physical domain and the external domain.   From the spiritual perspective, I have observed that suffering is most pronounced in the early stages of the disease when a person is aware that something is not right and there seems to be a lot of struggle associated with this. The early stages seemed to be a challenge for Jessie as she knew something was wrong, and she was grasping to hold on to her usual life.  A common occurence in this stage is the denial that there is a problem and a lack of insight. We often struggled with; do we tell her repeatedly that she has dementia or say nothing? We tried both approaches and for her, telling her didn't provide more comfort and she would forget within seconds, so we decided to not continually remind her.

During the early phases, I think we as a family suffered as much as Jessie did. The best way for us to respond to our suffering was to educate ourselves and focus on those things that were within our control. The other thing that we attempted to do, was accept that we were suffering and use it as an opportunity for personal growth. I have to admit I wasn't always successful at that.

I have read many books and blogs written by people who have Alzheimer's disease or dementia that have talked about finding blessings in the diagnosis. Some have described how it gave them a reason to slow down, simplify their lives and enjoy the connections and relationships with family and friends. Others have described how they have learned to live more in the moment and find joy in the small things. What a gift that is! Maybe we all need to learn from that!

From a physical perspective, I am sad to say that there is a lot more that needs to be done to alleviate the  physical suffering that people commonly experience. Although, dementia can occur in middle age, the majority of people are older adults who in addition to dementia have other physical ailments. These physical ailments are often accompanied by pain and discomfort. Pain and discomfort left untreated results in needless suffering. I said in a previous post that when "prickly" behaviors are present, it is critical that we first look to underlying physical causes before we jump to a medication to manage the behavior. There is some suffering that can't be fixed, but there is some that can, and when we can, I think we must do everything to address it!!!

The suffering that results from the external domain is related to the environment and how it is set up. We need so many more environments that are designed for people with dementia and that provide a dignified place to live with the disease. When people with dementia are living in environments that are not suited and adapted for their needs, suffering ensues. Suffering resulting from these causes can be alleviated and are within our control. For example, when Jessie moved into a home that was designed for people with dementia it was if her anxiety, stress and suffering melted away. She became calm and peaceful. In addition to the physical environment, the knowledgeable and compassionate staff created a feeling that left her feeling safe and comfortable! It was not surprising that as her suffering melted away so did ours.

I think as with any life threatening illness, there are periods of time when suffering exists. I guess the biggest blessing that I found in the suffering was the compassion that I felt and was able to witness in others. What are your thoughts about suffering and Alzheimer's disease?

3 comments:

  1. Alzheimer's disease directly affects about four million people in the United States, though it affects many more of us indirectly.


    Alzheimer Clinic

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