Every time I experience pain or loss in my life I remember this song. And despite how deep a pain penetrates I wouldn’t have missed the dance. This past week there was a sad situation involving a wounded deer. She was a young doe and was trying to eat from our bird feeders. I shooed her away but she didn’t move very quickly. It wasn’t long before I saw that her lower jaw was dislocated and hanging loose. Then when she turned around to look at me, I saw a large open gash on her left forequarter and she was limping. I started crying—in fact it was an ugly cry as my sister would call it—because I was helpless to help her. To make the situation worse there was a coyote circling around waiting to capture her. I couldn’t watch any longer. This scene along with red-tail hawks snatching white-crowned sparrows out of the sagebrushes, or pygmy owls knocking hairy woodpeckers to the ground and then flying away with them are difficult for me to see. But am I willing to give up the peacefulness and calm that goes along with country living? Not a chance.

The dance of owning pets is another one that I wouldn’t miss. When I was young my parents gave away our pets when they reached a year old. Not sure why although it might have something to do with moving houses every couple of years. One of our pets, my beloved Mitzi, a standard poodle, lived with us for 7 years. Then my parents gave her away to a good family. On that day I promised myself that when I grew up I wouldn’t own a pet because I didn’t want to experience the pain of losing them. But that promise didn’t last long. One day my husband and 2 young children came home with a 7-week golden retriever named Jake. He received Jake as payment for one of his duck carvings. Jake was the cutest puppy I had ever seen—red fur and a little red colour. I was hooked instantly. Since that day we have never lived without a dog—in fact we have 2 dogs (I’m resisting buying a 3^rd one), a ginger cat with white boots, Marty and about 40 goldfish in our outdoor pond.

This morning I was hiking with the dogs and thinking about being a care partner with Dave. I wonder if I would have said ‘I do’ in 1978 if I had known “the way it all would end, the way it all would go”. Would I have married Dave if I knew he would develop dementia in his 50s? Well I will never know how I would have felt in 1978 but in 2011 I wouldn’t trade my life–or Dave–for anyone else’s. Despite the challenges and pain of slowly losing my husband I wouldn’t miss the dance—lessons on living and loving the present moment, loving without conditions including myself, surrendering to what is, and compassion. I never imagined that life could feel this peaceful or calm regardless of what is happening in my outer world.

Just like the song says…”Yes my life is better left to chance. I could have missed the pain but I’d of had to miss the dance”.

Last week we spent a few days on a beautiful fishing boat with great friends and gorgeous scenery. Dave was excited to be some place other than at home with his daily routine of exercising and working on his puzzles. But when he doesn’t get his 11 hours of sleep and a 1-2 hour nap (combined with adapting to a different environment) he withdraws into his own world. There was a moment when 7 of us were sitting around the table enjoying a delicious halibut dinner and I noticed our friends laughing & chatting. Then I looked at Dave, sitting at the head of the table wearing sunglasses and a ball cap, mechanically putting his fork to his mouth and oblivious to those around him. I noticed the contrast between Dave (and us as a couple) with our friends. I was reminded of the change in our relationship and for a few hours, I felt really sad inside. Instead of crying, I wrote in my journal and by the next morning, I was feeling better. I began to pay attention to the ‘magic moments’…catching my first deep sea fish, the crystal blue sky as the fog lifted, 3 humpback whales blowing and diving, and for the wonderful friends who accept Dave for who he is now. Not who he was a few years ago.

Every day has magic moments, even though they are hard to find sometimes. You can identify them when you see, hear or feel something that makes you laugh, feel good, tingle inside, or smile. When you take a few extra moments to appreciate those moments, I guarantee they will sustain you through the tough times when you are fed up and want to throw in the towel.

Dave’s halibut

He wants to know what time I left for a walk with them this morning; did I see any horses or other animals; was the path muddy; were the puddles dried up; what route did I take?

I am getting tired of answering questions and I am thinking…are you kidding me about what path I took? We live across the road from miles of trails in deep woods. I can assure you there aren’t signposts for Bear Ave.or Cougar Rd.

“I don’t know Dave, there are lots of trails”.

He said “I thought you were going on the lower one”.

Oh good, he has a simple name for one of them…

“Yes, that is the one”.

But to test my patience further (definitely not on purpose), Dave wants to know where I turned around. Well…that just about throws me over the edge. I turn my head away from him and in a split second I say… “I turned around at the 20th tree past the boulder“. I can’t believe those words came out of my mouth and I am afraid to look at Dave because I will break out laughing.

There is silence and when I turn towards him, he has a serious look on his face…”I don’t think I know where that is”. Oh my! Dave doesn’t realize that I’m kidding and he is trying his best to figure it out. Instead of laughing (which is just below the surface), I smile and tell him that I will show him when we go on our next hike. My frustrations completely evaporate.

When I go over this scene in my head, I know that I didn’t start off in good humour with Dave’s questioning, but somehow I found a way to lighten it up. There seems to be sadness, anger and darkness surrounding dementia but I am discovering that with a bit of patience and practice, it is getting easier to laugh and find joy in the most unexpected moments.

I would love to hear about your unexpected moments of joy or humour.

For the past few days I have been busy getting ready (making lists, shopping, chores) for a big fishing trip up north with some friends. (I have never caught a fish and I am quite excited) Anyway, I noticed that my mind was starting to feel like it was in overdrive so I hopped on my mountain bike for a cruise along our country road. Within minutes I started noticing the crystal blue skies (all of the wildfire smoke has disappeared) against the green hills, the smell of fresh air, and the sounds of the birds flitting among the bushes lining the creek. The wind against my face and the feeling of gliding along on my bike was freedom. I was reminded of all of the things in my life that I am grateful for–living on a quiet country road among nature, our sweet animals, my health and Dave’s health–who has done very well since his diagnosis 3 1/2 years ago. It is amazing how great I feel when I quiet the chatter in my brain and surround myself with nature.

Stepping out of the commotion of ‘living with dementia’ is key to seeing the bigger picture of my life. Last year I was standing within a foot of a hummingbird feeder and there were 5 territorial male hummingbirds (3 calliopes & 2 rufous) fighting for a spot on the feeder. It was fascinating to be inside of their ‘organized chaos’ because they managed to buzz around me–without touching me or each other. What an incredible sight. It wasn’t until I stepped back out of their energy that I noticed how calm it was to be on the outside. My bike ride this morning was like stepping out of my chaotic mind chatter. I came back relaxed and rejuvenated. So…any time you feel yourself winding up, lace up your shoes and go for a walk, run, pick weeds or any activity that will get your body moving and in touch with nature. It is a win-win for everybody!

Living with dementia continually tests my ability to let go of fear. It challenges me to let go of worries such as: will I be able to afford Dave’s care in the later stages; will I be able to handle the increasing responsibilities; or will it take a toll on my physical and mental health. It challenges me to stay present and live for today, so that I can enjoy what I have right now.

Every time I face a fearful situation, it is a chance to ‘rewire’ my brain to respond differently. These tests are not always about living with dementia. I had a situation this past winter with our dog and a pack of coyotes…

It is 8:15 pm (pitch-black outside) and I am taking our Springer spaniels out for their nightly pee. They are hunting dogs with an acute sense of smell. Our youngest dog, Emma, catches the scent of a coyote and charges after it. I scream and whistle–pretty feeble whistler, but somehow I manage. By the time she comes back, my legs are jelly and my heart rate is over 200. Within seconds of coming inside the house, I hear a pack of coyotes yipping from the same spot where Emma had chased it.

Their game is to lure prey into their circle for an easy attack. My mind is racing because I keep thinking about what ‘almost’ happened, and what ‘could’ have happened. It takes me a few minutes and several deep breaths to calm down enough to realize that everything is fine. Emma is alive, and safe inside our house. Byron Katie’s message is playing loudly inside my head…fear is only what I think. When I really listen to my inner voice, I feel relief as I am letting go of the ‘emotions’ attached to my story.

Living with dementia is a much larger story than the dog-coyote one, but the lesson is the same. When I feel sick to my stomach because I have flashes of what the ‘end’ stage of this disease looks like, I bring myself back to the present moment. Right now, Dave is healthy and relatively independent. He is able to dress and take care of his personal care (with reminders to change clothes and have a shower every few days); he is able to work on his jigsaw puzzles; and he can still communicate, although his conversations are simpler.

There may not be hope for a cure for Dave’s dementia, but there is hope for a quality of life–we are living it. In many ways I am grateful to dementia and the challenges it presents because it is forcing me to let go of what I can’t control, and to let go of fear which is…”a story of a future, projected from our past.”

There is no denying that his sweet tooth has come alive with his dementia, but he shows remarkable discipline. After lunch and dinner he loves to eat 2 Dad’s chocolate chip cookies. Not 3 cookies–even if there are 3 left in the bag. I am sure I would not leave a lonely cookie in the bag when I can’t even leave frozen carrot cake alone. Anyway, 2 days ago we ran out of cookies and I wondered how he would manage until I went shopping. I think I have my answer…

Earlier this evening Dave came up the stairs with a mouth full of food. This  isn’t a big deal except our kitchen is on the main floor and I was curious about a stash of food he might have downstairs. Before I could stop myself, I asked him what he was eating. Through a mouthful of food, he said “nothing”.  Now 2 years ago I probably would have ‘called’ him on it and said something like “how can you honestly tell me you aren’t eating something when I see that your mouth is full”. Most likely I wouldn’t have let it go until he admitted I was right, or I became so frustrated that I would say something I would regret later. But now I ask myself…why does it matter that I need to be right? Will that add to the quality of our life?

 I believe that Dave answered as honestly as he is capable of. End of story. Once again I learned how much easier it is to ‘flow’ with life rather than resist it. This is one of the biggest gifts of living with dementia. Learning to let go of the smaller stuff and focus on what is really important—living in the present moment with a husband who does his very best with the abilities he has.

© 2010 Holly Eburne

It has been 3 years since our lives have changed dramatically. It took 2 years for me to hit the ‘wall’—a place where I felt overwhelm and wasn’t sure how I was going to survive the rest of this journey. I had a choice to stay stuck in the sad, overwhelm state or move through the pain and up the ladder to more peace and loving what is. It didn’t happen overnight. I spent months with a life counselor, reading, listening and taking personal development courses, meditating, and soul searching for answers. As I continue on this path I am feeling how much easier it is to ‘flow’ with my new reality than ‘resist’ it. Every day I am shown how to do it by Dave who is ‘flowing’ with what is.

It seems that I am surrounded by messages on how to live a happier, peaceful life. Last week I was at CEOspace—one of the finest business schools in the world. It stresses the ‘cooperative’, rather than the ‘competitive’ model. Their core message is…”when you help someone get what they want, you will get what you want”. (that doesn’t necessarily mean from the person you helped) It reminded me of a story I wrote in a blog several months ago…

The story is about a gentleman who arrives at the ‘pearly’ gates of heaven. He meets God at the door and says…”before I come into heaven, I would like to see what hell looks like, so I can better appreciate heaven. God says…no problem. Let’s go. When the door to hell opens there is a table covered with wonderful, healthy food. Around the table sit skinny, hungry and cranky people bickering with each other—holding 7 foot chopsticks in their hands.

They close the door and head back up to heaven. When they open the door there is a similar table full of wonderful food. People are joking, laughing and having a great time and in their hands they are also holding 7 foot chopsticks.

The gentleman asks God, what’s the difference? Why are these people so happy and healthy? God answers…because they feed each other.”

I love this story because it is a perfect illustration of how well the ‘cooperative’ model works. There is a balance of giving and receiving. As care givers we tend to ‘give’ more than ‘receive’. This is the nature of our new job. But it doesn’t have to be. How good do you feel when you give someone a special gift or help someone out? Can you feel their appreciation and love for you? On the flip side…how do you feel when someone offers to help you? Maybe a family member offers to take your loved one for a drive or to stay with him so you can have a break to be by yourself, or go out with friends and laugh. Do you accept their offers or do you hesitate? If your furnace breaks down or your car won’t start, would you ask your neighbor to help you? And if you do, are you comfortable receiving help without feeling like you should do something in return? I still need lots of practise.

Asking for help and ‘receiving’ (as much as giving) is a new concept for me. I have always prided myself on being strong; I equated strength with independence—not needing anyone. No matter what, I would figure it out even if I dropped into bed exhausted at night. But last year I reached a ‘tipping’ point and I knew that I had to change my way of thinking. If I was going to stay healthy and be the best care giver for Dave, I had to throw away my ‘default’ attitude. With practice, it is getting easier to ask for help without feeling that I should ‘give’ something in return. I am amazed at how much easier life flows. The feeling of being 100% responsible for Dave’s care is no longer weighing me down. People feel good when they contribute to a cause bigger than themselves. And I am feeling good knowing that I am not alone. I would say this is a win-win.

Last week I watched a great video on Ted.com called a ‘Stroke of Insight’  by Jill Bolte Taylor. She is a neuroanatomist who suffered a stroke at the age of 37.  Her hemorrhage was in the left brain (responsible for logic, reasoning, language, and past & future thinking) and for a few hours she was disconnected from it. She was mainly functioning from her right brain which thinks in pictures, is creative and lives in the present moment. There are no thoughts of…”I can’t do this”, “what if this happens” or “I wish it was different.” She said it was like being in la-la land. Her brain was quiet–without the usual chatter and worries about the stresses of the outside world.

While watching this movie, I had several ‘awakening’ moments which helps me to understand why my husband acts and thinks the way he does. With his dementia and diminishing left brain, he is quieter and more peaceful. He doesn’t worry or fret over what happened yesterday. He has a wonderful ability to surrender and accept what life is giving him—without anger or shame. He lives in the present moment and doesn’t spend precious energy on the future and what might happen tomorrow, or even the next moment. He has less brain chatter and is content to sit for hours watching the sky without the need to be doing something every minute.

As in every situation there are 2 sides to the coin. On the flip side, there are challenges. He is losing his ability to problem solve and reason. For example, he wanted to know if the box of ziploc bags should go in the freezer because it had a picture of sirloin steaks on the front. He has difficulty understanding the spoken and written word; he doesn’t recognize many of his friends; is hypersensitive to noises (dogs barking, brakes screeching, cell phone rings, musical instruments); and has a changing personality.

I have said many times  that my life is richer than before Dave’s diagnosis of frontotemporal dementia. Watching Dave quietly move through his day, living in the present moment, accepting what life is giving him, and not worrying about what his future holds, is a constant reminder for me to do the same.  

At the end of  the video, Jill suggested that all of us think about moving a little to the right of our left brain. She said our planet would be a more peaceful place to live, and we would see ourselves as ‘one’ with the universe. (Quantum physics has already proven it)

So how about doing something every day to slow down the chatter–go for a walk in the woods, watch children or dogs play, laugh out loud, take art or dance lessons or whatever is fun and feels good doing it. Please watch the video ( http://www.ted.com/talks/lang/eng/jill_bolte_taylor_s_powerful_stroke_of_insight.htmlIt ) and let me know how it applies to your life.