Grandma Is Not Defined By Alzheimer's Disease!

My thoughts and beliefs about  people who have Alzheimer's disease or dementia was challenged the other day when I was watching an episode of the Long Island Medium. In case you aren't familiar with the show, Theresa Caputo (the Long Island Medium) connects with people who have crossed over, died, are no longer in the physical world or whatever else you want to call it when someone passes away.

Watching this show, as well as many other sources of information, has reinforced my belief that the soul or spirit lives on when a person leaves their physical body. When this happens, whatever physical, emotional or spiritual difficulties people are experiencing disappear and what is left is pure love and wholeness. I know that there are as many beliefs about this as there are people on this planet, but I really try to keep an open mind and ask myself what if...?

During one of the shows, Theresa met a grand daughter of a woman who had died with end stage dementia. In the final stages she was no longer able to communicate and her grand daughter would share her stories from her day with her, read to her and communicate with her sharing her life without expecting anything in return. Through Theresa, the grandmother shared that she wanted to thank her grand daughter for continuing to speak with her and treat her as though she didn't have Alzheimer's disease. She appreciated and was aware of all the stories she told her, even though she couldn't express it at the time.

When I heard this I got goose bumps! So many of our assumptions rest on the belief that the person doesn't know the difference, doesn't know if we visit or not, won't remember our time together. What if...they actually do, and what we say and do actually does make a difference. What if....when the person dies they become whole and are aware of everything that occurred in this physical world even if communication is limited by dementia? What would you do or say differently?

Of course, none of us really knows what goes on behind the Alzheimer's disease and what happens when a person dies. In a previous post, When Saying "Good bye" Is Beautiful, I shared my experience of being with my mother in law as she passed away, and some of the powerful things that happened. I do believe that if we come from the belief that the person with Alzheimer's is at some level aware, we might communicate differently. I know that I would have read to Jessie more, sang more, shared my day more, went through old pictures more often.  I would have continually reminded myself that even if she couldn't express it, she was aware and grateful!

What Do Mount Kilimanjaro, Alzheimer's and Meditation All Have in Common?

What a year this has been! It was a year ago that my husband and I celebrated at the top of Mount Kilimanjaro. I didn't realize it at the time, that it would be the start of a year with much personal growth. I wrote an article about the lessons I learned from climbing Mount Kilimanjaro, and how they could be related to Alzheimer's disease. I now realize, that the lessons go much deeper than that!

So... what do they all have in common? They all test our ability and are a barometer for how skillful we are at living in the moment and actually being present for our lives. I knew when I climbed Mount Kilimanjaro that I wasn't very good at really experiencing every moment. I spent a lot of time listening to my music and audiobooks and obsessing about whether my solar charger would work, because god forbid I should be alone with myself and my thoughts! Most of the time I spent worrying, fretting and avoiding my feelings as apposed to bearing witness to them and accepting them. Every night I would lie in the tent and drown out my thoughts with my audiobooks.

For the past year I have been studying and practicing meditation in an attempt to be more comfortable with myself and experience more of my life as I'm living it. Although I have a long way to go, I know that I have come a long way. I now can go for a run without my music, I notice more things in nature, I can focus on other people more when interacting, I can actually taste and notice the food that I'm eating.  I feel calmer and have come to understand that "thinking" isn't the answer to my problems or challenges. I have also realized that avoiding or trying to drown out our feelings doesn't make them go away!

Alzheimer's has been the ultimate gift and barometer in that it has given me an opportunity to practice being in the moment. When I can be in the moment with someone with Alzheimer's disease or dementia, I can enjoy the time spent together as I'm less apt to be "thinking" about the past and worrying about the future. For this reason, I will continue my connection with people and families experiencing dementia, as a way to practice and cherish the connections which transcend words, time and space.

Thank you to those of you who are living with and sharing your experiences with dementia. We have a lot to learn about ourselves and this disease can help us to do that!!

Hold Thoughts In A "God Box"

"I am God. Today I will be handling all of your problems.  Please remember that I do not need your help. If life happens to deliver a situation to you that you cannot handle, do not attempt to resolve it. Kindly put it in the SFGTD (something for God to do) box.  It will be addressed in My time, not yours.  Once the matter is placed into the box, do not hold onto it...." (Internet chain letter by unknown author).  

Have you ever had a thought that continually creeps into your mind and you can't seem to let it go? A God Box is a tool that I recently learned about and that I've started to use in my life. I wish I had known about it when we were struggling to deal with Alzheimer's disease. There were so many times that we felt a lack of control and worried about the unpredictable nature of the disease and the uncertainty of the future. How does one deal with that?  The use of a God Box (or any other name if "God" doesn't resonate with you) is a wonderful solution.
   
A God Box is a place that you can write down your fears, worries,  or prayers on a piece of paper and pop it in the box to let it go and turn it over to a higher power or something other than yourself. Whenever you find yourself mulling something over in your mind and can't seem to let it go, there is something really powerful about writing it down and putting it in a box. It doesn't have to be a fancy box,  just anything that will hold your thoughts.
   
The neat thing about a God Box is that you don't need to believe in God to use it or get the benefit from it. The catch is that once you write it down and pop it in the box, you need to let it go. This is not an easy thing to do, but with practice you can get better at it. If something keeps coming up in my mind after I've put it in my God Box, I remind myself that it's in the box so I don't need to think about it.
   
The kinds of things you put in your God Box is really a personal thing.  I sometimes put things I'm worried about, or other times I put prayers or wishes for other people who may be struggling, or I put some sort of positive affirmation that I want to manifest in my life. One thing for sure, anything that can be written down and released will create space in your mind and thinking for creative solutions and problem solving. Focusing on the same old problems with the same old thinking, doesn't serve us well!!
   
Wendy Leung wrote a nice little article in The Globe and Mail, called "The God Box: transferring your troubles to a higher authority." She also includes the dos and don'ts of keeping a God Box. If you're into electronic tools, there's an app which offers a virtual God Box to keep track of your worries.

If you've ever used a God Box or an equivalent, I'd love to hear from you. Has a God Box made a difference in your life?

Just Dance!

Have you ever danced when nobody is watching and just found yourself letting go? It sometimes happens to me when I'm in my home gym and a really good song comes on. I will just break out in a dance and because know one is there to see what I'm doing, it just flows. I can honestly admit that the music and the dance have brought out emotions in me that I didn't even know were there. They can be emotions of happiness, or sadness or anger and they just arise. During those times, I just get lost in the movement and seem to transcend my thoughts. I don't think anything, I just feel and move. It's really quite remarkable.

I'm also reminded of the times that dance has brought powerful connections with Jessie and her children. Jessie, always loved to dance and even in the later stages of Alzheimer's disease, if she could stand she could dance. Dance brought her such joy at a time that she had difficulty expressing herself verbally and in other ways. She could connect with herself and her family through dance. No words were necessary, just dance! Now that she's gone, I reflect on the fact that if I could do it all over again, I would have danced with her more often.

The American Dance Therapy Association identified that "interacting in this manner de-emphasizes verbal language skills and cognitive deficits and allows persons with Alzheimer's disease and other dementias to participate in the group from a place of ability, rather than disability."  Although I love the idea about focusing on ability rather than disability, I cringe a little bit about the notion that dance is a "therapy". While I understand the context of dance as a therapy in that it provides a great benefit, I'm always cautious about labels that medicalizes a very human, non medical thing.

So next time, you're not sure about how to spend time with someone, just turn on the music and dance. As demonstrated in this touching video, no words are required, just movement, connection, excercise and the gift of finding joy in the moment!! Tell me about your experiences with dance. Have you ever found that connection through dance? What emotions were elicited?

How to Find Peace in Any Situation

I'm currently in the process of becoming certified, through the McLean Meditation Institute, as a meditation teacher. Meditation was never really something that I gave much thought to, until I began realizing that my thoughts and my mind really was running my life, and not always for the better. I've always thought of myself as a "thinker" which can be both a good and a bad thing. The good thing is that my brain has enabled me to fulfill a long and rewarding career in nursing and to achieve many goals that I've had over the years. The bad thing about my brain, is that it never shuts down and is often filled with thoughts that are less than peaceful, loving and positive.

When I heard about quick and easy activities that could actually settle my mind in any given moment, I was intrigued. If we're being honest with ourselves, Alzheimer's disease gives us lot's of opportunities to worry and feel less than peaceful. What will happen in the future? How will this disease progress? Am I doing all that I can/should? Will I be able to handle whatever comes my way? Does this person still know who I am? Why does this person act in such strange ways? And, countless other questions, that leave us feeling unsettled, anxious and depressed.

Imagine being able to return to, or experience a feeling of peace at any given moment. There are ways that we can do this, but like most things it requires a commitment to try and a willingness to practice. Next time you're feeling stressed or anxious why don't you give it a try.  The following are some practices that have worked for me:

1) The first place to start is always with the breath. Turn your attention to your breath and how it feels moving in and out of your nose. When you're attention is on the breath, it is not on the things that you were previously worrying about. Your breath is a life line and your connection to the here and now. You can do this with your eyes open or closed.

2) When you notice your mind is wondering, and worrying, try bringing your attention to what is going on around you. If you're somewhere where you can observe nature, that is particularly helpful. Notice the sky, or the way the wind feels on your face, or the sun on your body. Noticing nature, is a great way to come back to the  present moment. If you don't have access to nature, just paying attention to what you're actually doing will break the thought pattern. For example, if you're doing the dishes and you're worrying or stressing about something, bring your attention to the dishes. How does the water feel? What does the soap smell like? When I first practiced this, it felt strange, but it really does work and the more you practice the better you'll get and feel!!

3) I find using a short statement which I find calming is really helpful. It can be something like, "this too shall pass" or "I'm calm" or "I can handle this".  I used the mantra, "I'm okay" the whole way up the final trek of Mount Kilimanjaro. Without the mantra, my mind was traveling to all sorts of really scary places and scenarios!

4) If you have a few minutes, listen to one of the guided meditations provided in the Mind Candy section of this blog. It will give you an opportunity to replace some of the negative, destructive thoughts with more peaceful, calming thoughts. Our thoughts are either helping us experience a more peaceful life, or they're causing us stress and all the harm that goes along with being stressed out!

What things have you found helpful to bring your attention back to the present and find peace in difficult situations?

Why Suffering Could Be A Good Thing

How could anything good come from suffering? This was the question I asked myself when I first heard that there is an argument to be had for the benefits of suffering. I have to admit, that I really resisted the whole idea and thought that it must be coming from people who have never really suffered. Having said that, who hasn't suffered? It seems that we often feel that certain people and certain situations have more of a "right" to suffer.  For example,  someone who is experiencing the gradual and progressive loss of their mind due to Alzheimer's disease may be perceived to have more of a right to suffer than someone who is suffering because they lost all their money in a stock market crash or a bad business deal.  The important thing, though, is that it doesn't matter where the suffering comes from, the experience at a physical and an emotional level is similar. Suffering hurts and most of us try to get as far away from it as possible.

Although the experience of suffering is universal, regardless of the cause, the response to suffering from the external world is varied. For example, people may be more compassionate to someone who is suffering due to illness or loss, whereas not so compassionate if it's felt the suffering is self inflicted. So what good then could possibly come from suffering? If there was no suffering in this world, there would be no compassion. Compassion is a seed that is watered in people when suffering is present. To avoid suffering, means we stunt our ability to grow compassion.

The more I reflected on this, the more I could think of situations when I witnessed and experienced this.  I can think of so many times when family members of people experiencing dementia would respond differently to their situation. The family members that were in close and constant contact seemed to demonstrate more compassion than family members who, for whatever reason kept their distance. I often wondered what role compassion had in their involvement. Were they more compassionate because they were present, or were they present because they were more compassionate?

Unfortunately, suffering is not going to disappear anytime soon and since it's needed in order to develop compassion maybe it's a necessary thing. So, if we're left to suffer at times in our lives, how can we learn to suffer less and turn it into a growth opportunity?  I think the best way to do this is by observing our suffering and how we feel without trying to deny it or change it. When we accept our suffering, it seems to transform it. When we resist our suffering, it seems to magnify it. Another way to address suffering head on, is by asking ourselves, "what am I grateful for in the midst of the suffering?"  This question shifts us from being a victim of our suffering to being receptive to finding the gifts and lessons in the suffering.

I would love to hear from you about how you have managed suffering in your life? Has anything good ever come from your suffering?

When Connection Makes You Sick

The past couple of weeks has been interesting and definitely given me an opportunity for personal growth and reflection. My journey with my parents continues as they face significant health challenges. My mom fell and broke her pelvis and was admitted to a rehab facility for several weeks to regain her function. My dad, was left at home heading into the final round of treatment for cancer. The interesting thing is that I could see that a crisis was coming and couldn't do anything to change the course of the inevitable. You see, what I observed was the significant amount of stress that my mom was under and her inability to separate herself from what my dad was going through. At a subconscious level, it was if she needed this crisis in order to change the circumstances of her life. The longer his health issues went on, the sicker she became. It's as if their energy was joined and although I always believed it, I observed the profound impact that one person's energy has on those around them.

Reflecting on my experience with Alzheimer's disease, I think this commonly happens in the relationship between the person with the disease and the care partner. The challenge for the care partner, is how to stay connected, compassionate and present without making yourself sick. How do you maintain detachment when we're all so connected? If I'm being honest, I really didn't do a great job of that when I was going through it. So maybe that's why I have been given another opportunity to practice it with my parents who are currently going through their struggles.

One of the single most helpful things has been the practice of mindfulness. Being mindful has enabled me to be present in the moment without being swept up in the current of worry that arises when  thoughts are focused on the future. In this moment, everything is okay! Even if it's difficult to believe, everything is as it should be. The other great thing about mindfulness, is you learn to get in touch with your own feelings and emotions and observe how they are influenced by your circumstances and the energy of other people. With this increased awareness brings a level of acceptance that may not have been there previously. If you're interested in learning more about mindfulness, Mindfulness in Plain English by Bhante Gunaratana is a great book.

Now that the crisis is over, I really can see that everything happens for a reason. My mom is more peaceful than she's been in a long time and realizing that she needs to take care of herself. My dad is learning how to cook and I'm reminded that nothing is permanent, which includes both the happy and the sad times.