The Divine Spark

by Dr. Pat Campbell, Senior Minister and Spiritual Director, for the Calgary Centre For Spiritual Living.  Dr. Pat is the author of Giving God a Good Time.  

When Bev Janisch asked me to write an article for her blog on Alzheimer’s from a spiritual perspective, I thought, “What do I know about Alzheimer’s?”  But then I remembered that both my parents, although never diagnosed with Alzheimer’s, dealt with moderate dementia prior to their deaths. 

And like anyone else who has had a loved one lose their mental capacities – I often wondered, “Where did she go?  Where did that bright, funny, interesting woman go?”  And “Where did he go?  What happened to that strong, vital, man of integrity and dignity?”

The answer is, they didn’t go anywhere.  Because from a spiritual perspective, they still had the spark of the Divine within them – even if I couldn’t see it anymore.

As a minister of Centers for Spiritual Living, what I teach and believe is that God (or whatever you choose to call the Universal Life Force) is all there is.  Everything is part of this Life Force.  It cannot die.  It cannot become confused.  It cannot be extinguished. 

Because that is true, then we too are part of this Life Force.  Each of us has that Divine Spark within us.  Each of us is here to shine that spark as brightly as we possibly can.  And no one’s spark is like anyone else’s.  We are unique, special, and absolutely individual.  Each of us is walking our own individual spiritual path, that is just right for us for our own soul’s growth.

When I remember this, I can view what appeared to be the loss of my parents to dementia as part of their spiritual path; their soul’s growth.  I can celebrate when their spark was bright and vivid, and be happy for having that be part of my life. 

And I can also appreciate them when their spark appeared dim, because I know that nothing can really diminish the spark – it’s just that I could no longer see it.  Yet, it was still there, shining brightly of the path of their soul’s growth.

Blessings.

Alzheimer's Four Agreements

Don Miguel Ruiz wrote a book named "The Four Agreements." If you haven't read it, it's definitely worth reading.  It was interesting to me, that although it wasn't written about Alzheimer's disease, the book's message is very relevant to both living with this disease and life in general.  The book "reveals the source of self-limiting beliefs that rob us of joy and create needless suffering".

The first and most important agreement is to be "impeccable with your word." This agreement acknowledges that the word is a very powerful tool which can manifest both good and bad thoughts, feelings and outcomes in your life. I've often been concerned about the words we use surrounding Alzheimer's disease and believe that the words impact how we feel about it. For example, words like, victim, sufferer, robbed, tortured, violent, non compliant are often used when describing those impacted by the disease. Think about how these words make you feel. Words are powerful and we must chose them consciously to result in more peaceful and loving experiences. Alzheimer's Australia, published a paper, Dementia Friendly Language,  which provides suggestions for preferred terms which result in more positive and hopeful feelings.

The second agreement is "don't take anything personally." Wow, that is a really hard thing to do when many of us take so many things personally. What does that mean in the Alzheimer's world? It means that most of what happens when interacting with people with dementia is as a result of the disease and not as a result of us. It doesn't make it any easier, but it is the truth. Miguel Ruiz wrote, "All people live in their own dream, in their own mind; they are in a completely different world from the one we live in. When we take something personally, we make the assumption that they know what is in our world and we try to impose our world on their world." Amazing! He wasn't even talking about Alzheimer's disease!

The third agreement is "don't make assumptions." This is a really important one in the Alzheimer's world as we tend to make a lot of assumptions based on a lack of knowledge about the disease. He describes that "we make all sorts of assumptions because we don't have the courage to ask questions." I may be going out on a limb by saying this, but there are no excuses to not ask questions and learn as much as you can about Alzheimer's disease. The more you know, the fewer assumptions you'll make and the less you'll suffer from all the strange things that go along with the disease.
   
The fourth and final agreement is "always do your best." This is a hard one to consider in terms of dementia, because somehow it feels like you're best is never good enough. When we do our best, it doesn't change the course of the disease or alter the challenging situations. I have to admit that I have a hard time with this agreement as it implies that we need to judge our best and the very nature of judging can result in beating ourselves up. Having said that , doing your best is about accepting yourself and accepting the situation that you find yourself in. Doing your best is something that happens in the moment and the good thing about that is that the moment is always changing.

Have you found other agreements that have been helpful when dealing with Alzheimer's disease??

Are Anxiety and Depression Related?

One of the most challenging symptoms of Alzheimer's disease to witness and alleviate is anxiety.
Anxiety is so common in Alzheimer's disease and dementia and is often an indicator that the person is "suffering" at some level. Dealing with anxiety is very complex as there are countless things that could be contributing to the anxiety. One thing is for certain, and that is we need to stand up and pay attention when anxiety is present because there is a reason for it.

One of my "pet peeves" in the dementia world is when medications that commonly have significant side effects are used to "dull" or attempt to alleviate the anxiety. While the goal to alleviate the anxiety, is a noble one, the way we go about it is so important in order that we enhance  quality of life and minimize adverse effects.

Whenever anxiety is present, it is vital that all psychosocial, environmental and underlying physical causes of anxiousness are ruled out.  This means that the environment needs to be calm, the person who is anxious is physically comfortable, the expectations being placed on the person are realistic, frustrations are minimized, and that the person has had a chance to burn off excess energy.

It is important to note that a very high percentage of people with dementia and anxiety also meet the criteria for a diagnosis of depression. Why is this important? This is important because we have a lot more success managing the anxiety when it's recognized as part of an underlying issue such as depression. Secondly, when we treat the depression the chances of improving quality of life and alleviating suffering is possible. When we just treat the anxiety with traditional medications, like benzodiazepines, such as Ativan, we often end up with significant side effects and a whole spectrum of other issues. James Clyde Sellman Ph.D,  provides a helpful overview about this in the article, Alzheimer's Disease and Anxiety.

In summary,  if the person is anxious and there is a chance that they are also depressed, I would focus on the depression and manage it with one of the newer antidepressants that have minimal side effects and a good chance of improving quality of life. I would love to hear your stories and experiences with anxiety and depression....

How Much Energy Do You Expend Judging Alzheimer's Disease?

Have you ever thought about how much energy you put into judging whether things in your life are good or bad, or right or wrong? We seem to spend a lot of energy judging both ourselves and others and then beating ourselves up over the conclusion, when either we or others don't measure up to our expectations.

I set out on a project which included observation of the number of times in a day that I judged something, either external to me or within myself. I was amazed at how many of my thoughts included judgement of some sort. When Jessie was alive,  I spent a lot of time judging the nature of Alzheimer's disease and that it was wrong and/or bad. I judged her behavior and I judged my responses to both her and the disease.

What would happen if we removed judgement from our life? What would it be like if we didn't judge anything as good or bad, right or wrong, rather just accepted "what is".  I've been playing around a little bit with this concept and I have to say I'm definitely more content and peaceful when I remove the judgement and live with what is. We spend a lot of time and energy torturing ourselves mentally with judgement and not only does this affect us, but also relationships with other people.

Spend some time today noticing how frequently you judge things and the nature of your judgements. It's quite ironic that as I'm sitting here, I am thinking about how I have hurt my lower back and how bad it is. I'm thinking about the things I had planned to do in the next few days and that I won't be able to do them. I'm spending a lot of time judging and am reminded that I can replace the judgement with "what is".  As soon as I reminded myself of this, I felt more peaceful.

There is a prayer in The Four Agreements by Don Miguel Ruiz, that would serve us well to reflect upon: "Help us to love others just the way they are with no conditions. Help us to accept them the way they are without judgement, because if we judge them, we find them guilty, we blame them, and we have the need to punish them." I would also add that we could replace the "them" with the 'I" and extend the prayer to ourselves as well as others!

What Are We Meant To Learn From Alzheimer's Disease?

Through gratefulness you attract grace. Gratefulness is the magnetic force that brings grace to you- Osho

Have you ever wondered why Alzheimer's disease is in your life? It really resonated with me when I heard someone ask "why me" and then flipped it around and asked "why not me?" When bad things happen to good people, I really believe it's because we are meant to learn something from it. Why is it that we only learn when things are tough? Maybe the the whole point of the struggles and challenges in our lives are so that we'll learn something from it!

That got me thinking about what I have learned from having Alzheimer's touch my life, first in my career and then in my family. I gave it some serious thought and came up with 10 things that Alzheimer's taught me. Learning these things wasn't an easy process as it isn't the most comfortable thing to look at yourself and acknowledge that there are some areas that require some work. This is my list:

1)  I wasn't as patient as I would have liked to be. I forgave myself for this and then began to learn to practice patience in my life.
2)  I had to constantly remind myself to not blame the person for the effects of the disease, but to blame the disease.  This enabled me to be more patient and compassionate towards the person while acknowledging the frustration with the disease and not the person.
3) I had to learn to let go of the things that I couldn't control and accept uncertainty. Thinking that I could actually control the disease just lead to frustration.
4) Learning to live in the moment was the greatest gift of all.  I'm grateful for a disease that continually reminds me that the moment is the only thing that we have. This lead me to learn to meditate which has resulted in more peace and calm in my life.
5) Connecting is possible and when it happens it's beautiful.
6) The soul is not the mind.  The soul exists even when the mind is affected by the disease.
7) Most things are more powerful than words, like animals, nature, music, touch, a smile and love.
8) Communities need to embrace all those who are suffering and do everything humanly possible to be compassionate and desire to alleviate the suffering.
9) Suffering arises from the mind. The more with think about our situation, the more we suffer.
10) The thoughts and feelings that we focus on grow so why not make them loving, accepting, kind, patient, non judgemental and forgiving.

What has your journey with Alzheimer's or dementia taught you?

When Saying "Goodbye" Is Beautiful

Live deeply, live totally, live wholly, so when death comes and knocks at your door you are ready- Osho

I had been a nurse for many years and experienced some pretty remarkable things at the time of people's deaths. I worked in palliative and end of life care and was commonly amazed by experiences that would leave me questioning about what happens when a person transitions out of this world. What happens when a person dies? Does their spirit live on? I definitely don't know the answers to these age old questions, but I do know that what I've witnessed  has left me wondering.

When my mother-in-law Jessie died, I, as well as other family members were at her bedside. She was at the stage in her disease that she didn't know who we were  and had difficulty communicating. When we got the call late at night that this might be "it" we made our way to the care facility where she was living. This was not the first time that we got "the" call, however, and we wondered whether this was really it, or was this another false alarm. This roller coaster of near death and then coming back to life is a common phenomenon in the Alzheimer's world.

When we arrived, Jessie was unresponsive and resting peacefully. Her breathing had changed and she didn't respond to her name or touch. She seemed to be in that place that wasn't in this world, but wasn't yet transitioned out of this world. Being a palliative care nurse, I knew that this was likely the last few hours or days of her life. I was so grateful that she seemed comfortable and had a very peaceful look on her face. We just sat with her and took turns sitting on her bed and stroking her arm.

At one point early in the wee hours of the morning, my husband was sitting on the edge of the bed with  Jessie's hand resting on his. He looked to me and informed me that he was going to leave to go to the washroom. As he began to move his hand away to leave for a few moments, Jessie grabbed his arm and firmly held on. Nothing else changed in her except that communication that she didn't want him to leave. My husband looked at me with disbelief in his eyes and indicated to me that he was going to try this again and see if it happened again. When he repeated this, the same thing happened. Jessie, wasn't able to talk and appeared to be unresponsive, but she was aware! Jessie died a short time later with her family at her side.

I have nursed people who shared what happened during near death experiences and who came back from an unresponsive state. All of them told me that they were aware of what people were saying to them and everything that was going on around them. This is such a powerful thing to know as people sit vigil at the bedside of someone who is dying.  These same people also shared with me that they weren't afraid and that they were in a peaceful and loving place.

What experiences are you willing to share?

Can We Be Grateful For Alzheimer's Disease?

I know that sounds like a strange question.  Quite honestly I never thought about gratitude when I was in the middle of dealing with the day to day struggles of Alzheimer's disease. Now that I have some distance from the experience and started to become more grateful about things in general, I have come to appreciate the profound impact gratitude can have.

At the time that I was accompanying Jessie on her journey with Alzheimer's, I seemed to focus more on the challenges and what we as a family were losing. I think that is a normal reaction and one that is experienced by many. I have come, however, to understand the gift of gratitude and believe that if I had identified more with gratitude than lack, loss or difficulties, I may have had more joyful, peaceful moments.

The thing that I am most grateful for as a result of my experience with Alzheimer's disease is the realization that the more I live in the moment, the happier I am. The more we don't live in the moment with Alzheimer's disease the more we will struggle and suffer. Being grateful for the moments is the single most powerful thing that we can do to attract more special moments into our lives.

I just finished watching the movie, The Secret. I had read the book a number of years ago and decided to watch the movie. I found it incredibly powerful as it reminded me about the law of attraction and that what you focus on, is what you manifest more of in your life. If we focus on the negative about Alzheimer's disease, we'll attract more of it. If we focus on the things that we have to be grateful for we change our experience to a more positive one.

Gratitude is not only something you think about, but it's also something that you feel. When I first started to focus on being more grateful in my life, I focused on the thoughts but not the feelings. To truly practice gratitude you need to also feel it. I now spend time in the morning, night and periodically throughout the day thinking and feeling the gratitude. A good trigger for me is when I start to get into a negative thinking or feeling cycle. A few seconds of gratitude and it's amazing how different I can feel. Writing it down, amplifies it even further.  So if you haven't already, why not try a gratitude journal. If you do, you will no doubt be grateful for it!

Listen to what Brene Brown has to say about gratitude and joy.  What are you grateful for today?