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?

Compassion for Self and Others: A Magical Ingredient in the Alzheimer's World

When we feel love and kindness toward others, it not only makes others feel loved and cared for, but it helps us also to develop inner happiness and peace- Dalai Lama

There is no greater need than the need for compassion for ourselves, as well as for others. Compassion is one of those words that is hard to describe as it is truly a feeling that arises from deep within when touched by someone's suffering. Compassion comes from the soul of a person and is the transference and sharing of warm, loving, caring and concern for another human being.

In the world of Alzheimer's disease and dementia, compassion enables a person to view the strange behaviors and situations that commonly arise in a loving and accepting way. Compassion comes from a place of knowing that it is the disease that is behind these strange behaviors and occurrences and not the person. Compassion leads to patience and loving responses that leave the person with dementia feeling comforted and at peace. When we can feel more compassion towards people we ourselves benefit as we feel more peaceful and grateful.

I think one of the greatest barriers to compassion in the dementia world is fear.  The fear associated with the unknown and lack of understanding of the disease. The fear that this disease could potentially happen to me. The fear of not knowing how to handle different situations. The fear of what the future may bring. Fear prevents us from getting up close and personal with the person with the disease. It prevents us from letting the compassion flow.

I have witnessed the most remarkable acts of compassion in dementia care.  When my brother in law came to visit from out of town,  he spend hours compiling Scottish music for his mom to listen to. Jessie was at the stage in the disease when it was difficult to connect with words and when we visited we needed to find creative ways to connect. Her son spent an afternoon with her just being with her as they played the music and  rummaged through old photos. She couldn't remember exactly who the people were, but she loved going through them all the same. What happened on that afternoon was pure love, compassion and acceptance.

I found an informative and insightful website on Self-Compassion by Dr. Kristen Neff.  There is a test that you can take to determine how self-compassionate you are, as well as exercises to increase self-compassion. There are also some guided meditations that you can listen to that will help increase compassion. I would love to hear your stories about compassion in the world of dementia and Alzheimer's disease. The more we share these beautiful moments, the more we'll have!

Can Alzheimer's and Happiness Coexist?

Biochemist turned buddhist monk, Matthieu Ricard shares his thoughts on finding more happiness, serenity and fulfillment through training the mind in the habit of well-being. 

The Healing Power of Morning Routines

Have you ever really noticed what is going through your mind when you first wake up in the morning?  It's interesting that when I ask people this question, most of them say that they really don't know. For many the default goes something like this:  "I've got so much to do today, I'll never get it all done," or "I wish I could stay in bed longer" or there's the rumination about problems that arose the day before or worrying about what the upcoming day may bring. Getting out of bed for a lot of people is a dreaded activity filled with lot's of negative thoughts and the associated emotions. Does this ring true for you?

The fact is that if you don't know what you're thinking about, you can't make a conscious decision to change it into something more positive, loving and compassionate towards yourself.  Louise Hay, in her book "You Can Heal Your Life," writes about the power of morning rituals to start your day off right. She describes how she could "remember when I used to awaken in the morning and say with a groan,"OH GOD, ANOTHER DAY. And that is exactly the sort of day I would have, one thing after another going wrong." So when you recognize that your first thoughts of the day set the tone for the next moment, the next hour, the next day and ultimately your whole life, it becomes pretty powerful.  Who wants to live each moment thinking about what a crummy life they have?

The place to start is by paying attention to your thoughts when you first wake up in the morning. Then develop a morning  routine that works for you and is kind and compassionate to yourself. For me, I do the B-R-P-M-M, which means:

B- Before I rise I lie in bed and think about all the things that I'm grateful for. I think about my activities     for the day and I send positive energy ahead to the activity. I have a practice of finishing "I AM" statements with only positive words, like; "I am patient", or "I am loving", or "I  am compassionate", or "I am peaceful".  That feels a lot better than thinking, "I am tired" or " I am depressed" or "I am not worthy" or.....you get the idea.

R-P-M- Rise, Pee, Meditate is suggested by the Chopra Centre as vital to a morning routine. Even if it's just for 5 minutes, I start the day off with a meditation. What a gift to start the day calm and peaceful with warm thoughts!

M- Musings is how I finish my routine before breakfast. I write three pages of absolutely anything that comes into my mind. I don't think about it, I don't judge it, I just write it. I liken this to taking out the trash that is stinking out my life. There are so many wonderful benefits from this that I'll designate a full post to it in the near future.  This is something I recently started and I'm amazed at the benefits in terms of how good I feel when I get things out and create space for positive thinking.

The point is to start your own routine that fits for you. Although it may take a few more minutes at the start of the day it will transform your life! Marianne Williamson talks about how to Start Your Day Right in this video. Please share any ideas that you have that may help others start their day in a most wonderful way.

Alzheimer's Spiritual Journey

by Bev Janisch

We don't receive wisdom; we must discover it for ourselves after a journey that no one can take for us or spare us- Provst

I have to admit that when my mother in law, Jessie, was alive I didn't give much thought to the idea of spirituality and Alzheimer's disease.  I didn't give much thought to spirituality in general as it related to my life. I did however, think shortly after she passed away that there had to be some meaning to her Alzheimer's disease and that perhaps the answers lied more in the spiritual domain.

I found an interesting article by Sharon Janis, in Spirituality for Dummies, where she described how spirituality goes beyond the physical world of matter and outer appearances and seeks to find the soul of everything.  "One of the main teachings of spirituality is to look within and find what you seek within yourself." I think the challenge of living and caring for someone that has Alzheimer's disease is that we begin to question everything in our life.  We find ourselves asking questions that we've never asked before like: What remains of the person affected by the disease?  How can I connect with this person that I love? Does everything that we had and shared cease to exist? What will the future look like?

I really loved the idea of looking within and how that relates to Alzheimer's disease. When the mind is gone is the soul still there? I heard someone say that you don't cease to be you if you have an organ removed such as a gallbladder or pancreas. The brain is the most complex organ in the human body. So when the brain ceases to function as a result of Alzheimer's disease, does that mean the person ceases to exist?

It is my personal belief that spirituality transcends the mind and it is the core of who we are beyond our ego, and societal expectations. It is the very nature of our "being."  The spiritual journey is travelled on a road that takes us home to our core where our authentic self lives.  It's a peeling away of all the layers that mask or hide who we really are.

Alzheimer's disease and dementia challenges us to ask the big and important questions in life. I believe that these questions are what's important and not the answers.  I think there is a gift to be found in the struggle arising from asking the questions.  Perhaps the gift is the return to what is important in life, namely our true selves.  The crises that happen in our lives happen for a reason. Perhaps Alzheimer's disease is in our lives to create an opportunity for spiritual growth.  What other reason could there be?

What Climbing Mount Kilimanjaro Taught Me About Alzheimer's

by Bev Janisch

In January 2013 I climbed Mount Kilimanjaro in Africa. I knew it would be a challenge that would test both my physical and mental strength. I was a bit daunted by the fact that I could prepare for the physical challenge but wasn't really sure how to prepare for the mental challenge.  The whole experience was outside my comfort zone and at some level I knew I needed to grow spiritually, and this might just create the catalyst that I needed.

The change happened in the months following the trip when I started doing some soul searching.  I began to realize that the preparation for the climb and the actual climb provided a framework for how a person could face challenges in their life.   I believe that all the small challenges in our lives are often there to prepare us for the bigger ones. There is no doubt that Alzheimer's disease is a large challenge.

The process of climbing Mount Kilimanjaro taught me some valuable lessons that could be applied to the journey of Alzheimer's disease:

1) Do your homework and prepare for the climb by arming yourself with information.

Understand as much as you can about the disease and the nature of Alzheimer's disease and dementia. The more you understand, the more tools you will have to respond in compassionate ways to both yourself and the person with the disease.

2) Don't look at the whole mountain or you'll undoubtedly get overwhelmed.

Take it one step at a time and one moment at a time.  If you think about a continual string of "what if's......" the result is despair, anxiety and worry. Most of the time the things we worry about aren't even the things that actually happen. So developing an attitude of dealing with things as they come is healthy and more peaceful.

3) Assemble a good support team.

Connect with as many people as you can about the experience.  Put an intention out to the universe that you want to go through this experience with others who can support you and you them.

4) Once the preparing is done and the team is in place, let go of the need to control everything and go with the flow.

Letting go of control is very freeing and powerful. It applies to Alzheimer's disease, but also to many areas in our life where control is just an illusion. Alzheimer's and dementia creates the perfect opportunity to learn to let go of those things we have no control over!

What other thoughts or words of support do you have for people experiencing Alzheimer's and dementia?

Music's Double-Edged Sword

by Bev Janisch

There is a lot of research demonstrating the benefits of music in the lives of people with Alzheimer's and dementia. Music that resonates with a person, seems to connect us with the deepest part of ourselves, the soul.  There is no need to talk and struggle with words, there is just that part that  connects with the music bringing joy and peace.

My mother in law, Jessie, loved Scottish music and old tunes.  When her dementia had reached a point that she had difficulty expressing herself, she was able to sing the lyrics to all her favorite songs. When words were failing, music remained. These times were often the happiest and where she was the most joyful.

There is however, another side to music and times when music can become toxic for the person with Alzheimer's or dementia. Too much of a good thing, or a good thing used in the wrong way, or the wrong time, is no longer a good thing. I have to admit, that the misguided use of music in many of the homes and facilities that I visited, was a real concern for me. Have you ever been stuck somewhere where loud music is being played and it is the genre of music you really don't like, or it's too loud, or you're having difficult concentrating because of the music? How did that make you feel?  In these situations it is not uncommon to feel anxious, nervous, unsettled or angry.

Person's with Alzheimer's or dementia have difficulty processing things when too much is going on in the environment. Add background, continuous and purposeless music to the equation and you have a recipe for disaster. When music is just playing continually in the background it becomes noise rather than music.  Making matters worse is when the staff pick the music based on their preferences.  There are a lot of things we can't change about environments where people with Alzheimer's live, but this is a small change that would make a huge difference!!

I want to put a challenge out there: Let's create environments that integrate music to enhance quality of life and not detract from it. What have been your experiences with music? The following video is a beautiful example of the positive power or music when used to connect with the soul: