But being diagnosed with dementia is different. When we left the doctor’s office 5 years ago after my husband, Dave, was diagnosed with Frontotemporal dementia, we were given NO hope. No hope for treatment, certainly no hope for a cure, and no ‘game plan’ on living a quality of life with this disease. We are in the new generation of baby boomers living with dementia.

I recently watched a Larry King Special on Alzheimer’s and it definitely wasn’t an uplifting program. But then what did I expect from a program on CNN where pain and suffering make headlines? Anyways, I learned a few things such as how little money goes into research for this brain condition. Larry said that 5 Billion dollars is spent on cancer research and 6 Billion dollars on AIDS compared to 500 Million on Alzheimer’s. There are 5.4 million people with Alzheimer’s in the United States. Not sure if that is all people with dementia or the most common form–alzheimer’s. And there are over 15 million unpaid primary caretakers.

The epidemic of the century. If people weren’t afraid or paranoid about getting Alzheimer’s before this program they might be now. The picture isn’t pretty. I realize that I am not dealing with the end-stage of dementia but my experience has been a personally growing and eye-opening one. I wouldn’t trade the lessons and insights that I am gaining for my life before Dave was diagnosed. Sure I am experiencing losses every day–but my gains are greater. They are greater because I am stepping back and looking at the person I”m becoming. The one with more patience when I’m in a traffic jam, or with the 20 tele-prompts before I speak with a human being on the phone, or with flights that are cancelled due to bad weather. When I’m riding my bike I’m not in a hurry like I used to be. I love to stop and feed alfalfa to the horses–savoring their ‘horsey’ smell and the feel of their soft noses as I kiss them.

I am learning (from Dave & practice) to live more in the present moment instead of worrying about how fast Dave is going to progress, or how I will handle it. I am more aware of little things like the beautiful sound of our cat purring, or the 2 blooming roses that escaped being eaten by deer. I have learned how to quiet the chatter in my mind by meditating for a few minutes in the morning, or by being aware of my breath throughout the day. Our neighbours, friends and family help me with the chores around the house because they feel good and don’t expect anything in return. For the first time in my life I can feel joy and peace without it being a sunny day or having loads of money in the bank. What a gift to feel this peaceful; a gift that didn’t happen overnight and not without lots of tears and inner work.

From the outside, living with ‘D’, seems horrific but there is more to this picture than is portrayed in the media. I realize that I’m only in my 50s and I have decades of building on the life experiences I am gaining from living with someone who has dementia–someone who is losing more than me–yet is surrendering to his reality.

In the faint light of the attic, an old man, tall and stooped, bent his great frame and made his way to a stack of boxes that sat near one of the little half-windows. Brushing aside a wisp of cobwebs, he tilted the top box toward the light and began to carefully lift out one old photograph album after another. Eyes once bright but now dim searched longingly for the source that had drawn him here.

It began with the fond recollection of the love his life, long gone, and somewhere in these albums was a photo of her he hoped to rediscover. Silent as a mouse, he patiently opened the long-buried treasures and soon was lost in a sea of memories. Although his world had not stopped spinning when his wife left it, the past was more alive in his heart than his present loneliness.

Setting aside one of the dusty photo albums, he pulled from the box what appeared to be a journal from his grown son’s childhood. He could not recall ever having seen it before, or that his son had ever kept a journal. Why did Elizabeth always save the children’s old junk? he wondered, shaking his white head.

Opening the yellowing pages he glanced over a short entry, and his lips curved in an unconscious smile. Even his eyes brightened as he read the words that spoke clear and sweet to his soul. It was the voice of the little boy who had grown up far too fast in this very house, and whose voice had grown fainter and fainter over the years. In the utter silence of the attic, the words of a guileless six-year-old worked their magic and carried the old man back to a time almost totally forgotten.

Reminded that he had kept a journal of his business activities over the years…Opening a glass cabinet door, he reached in and pulled out an old business journal. Turning he sat down at his desk and placed the two journals beside each other. His was leather-bound and engraved neatly with his name in gold, while his son’s was tattered and the name “Jimmy” had been nearly scuffed from its surface.

As he opened the journal, the old man’s eyes fell upon an inscription that stood out because it was so brief in comparison to other days. In his own neat handwriting were these words:

Wasted the whole day fishing with Jimmy. Didn’t catch a thing.

With a deep sigh and a shaking hand, he took Jimmy’s journal and found the boy’s entry for the same day, June 4. Large scrawling letters pressed deeply in the paper read:

Went fishing with my dad. Best day of my life.

These past few years have been a time of massive personal growth and uncovering the ‘real’ Holly. It isn’t an easy process but definitely worth the sweat and tears that come along with it. Living with a husband with dementia has taught me about unconditional love, patience, surrendering to what is, and living in the present moment. In addition, when our investments collapsed I had to search for a deep knowing or trust that I would feel happy again–despite my external circumstances.

This morning I was listening to a meditation about self-love in one of my energy/intuitive coaching courses. It seems that no matter how many times I practice or become aware of the need to love myself, I always learn a little bit more about how to do it. I’m finally understanding that if I’m to truly love someone without conditions, then I have live it myself. When I judge another person I am really finding something inside of me that I don’t like. For 57 years I have been looking for love outside of me when all this time, it has been inside.

Loving myself is far more difficult than I imagined. I didn’t realize how often I look in the mirror and pinch the extra soft tissue around my belly or upper hips. Or notice the abundance of wrinkles multiplying daily. How about the endless times that I beat myself up for the mistakes I made in investing our hard-earned money. How many more times do I have suffer? When will I truly surrender or accept what is and learn from it? When will I understand that I always do my best and that mistakes are fertile ground for learning. And in regards to my body image…how about learning to let go of my judgments and loving every bit of ME. Me–because I’m unique—just like YOU.

To help you on your path to loving yourself unconditionally, here is a shortened version of what I learned this morning. It helps if you are in a quiet area with your eyes closed or slightly opened and relaxed.

First of all think about someone you LOVE with all of your heart and soul. Take a second and find out where you feel this emotion in your body. For example, when I remember the moment our son or daughter was born, I feel a huge ball of love in my chest area. It feels so good to think about my family, pets, patients in my physiotherapy practice,  friends, and our home in the country.

Now I want you to focus on your heart or wherever you feel your love and turn up the volume on it. Turn it up as high as you want and feel it spread throughout your body. Then put your hand on your chest and say out loud…”I LOVE me” 3 times. Notice how you feel and whether it gets easier on the 3rd time. Turn up the volume knob again (without effort) and really feel the love you have for yourself. Then take a couple of ‘easy’ breaths and slowly open your eyes. Look around and notice how you feel and whether the room looks any brighter or sharper.

Like any new lesson, it takes ‘conscious’ practice before it becomes easier. To help you out over the next 21 days (that is how long it takes for a habit to form), I want you to look in the mirror every morning, and while looking into your eyes say…”I Love you, thank you for being so wonderful and for being you”.

Don’t forget…to give love you need to love yourself first.

When someone is upset or having an angry moment, my sister says, “there’s a pony in there somewhere” (ie. A golden lesson). This past week I phoned her because I needed to ‘vent’ about a persistent bear hanging around our bird feeders. She used her pony line with me and it broke the tension. We laughed; we believe that everything happens for a reason but we couldn’t find the pony in my bear dilemma. That is…until I finally stopped paddling upstream and stopped resisting Mother Nature. It will make more sense after you read my story…

Once upon a time there was a black fluffy bear roaming Campbell Creek Valley. One day in October he came upon a stash of GOLD—a winter’s supply of fruits and nuts. There are plenty of ripened chokecherries and a dozen bird feeders filled with sunflower seeds. When the homeowners wake up the next morning they were upset to find that several of their feeders are damaged–all of them are empty. They knew immediately who the visitor is. So they salvage a few of the feeders because they love to watch and listen to the birds. They built a pond and planted various berry bushes that attract large number of birds.

Mrs. E—the mother of the household—is determined not to let this young bear ruin her bird sanctuary. She decides to outsmart him by hanging one of the feeders in a tree about 20 feet off the ground.

Later that night Mrs. E is outside with her dogs when she hears some clanging and commotion in the tree. She looks up to find the young bear munching his snack from the feeder. Mrs. E is NOT happy. She immediately takes the dogs inside and brings out a ‘bear banger’–fireworks that are supposed to scare away bears. But her plan backfires. She shoots the banger but it only sends the trembling bear higher in the tree.

Since Mrs. E knows that it is almost time for the bear to hibernate, she works with his nightly schedule and brings all of the feeders in after dusk.

Winter came and went. It is the beginning of May and once again Mrs. E notices that her feeders are missing from their posts. Parts of them are scattered on the grass and under the trees. She instantly knows that her furry friend is back. Not only has he returned but also he is very hungry and hangs around for most of the day. This puts Mr. & Mrs. E and their dogs on a constant alert.

For 4 weeks the struggle continues…always looking out the windows, bringing the feeders in and out of the house, and grabbing them quickly as the bear hisses from 15 feet above.

One afternoon Mr. E’s best friend–a biologist, is visiting and tells them they need to stop feeding the birds if they want to get rid of the bear. Mrs. E is feeling sad because she loves the sounds and sights of birds. It’s taken her 19 years to build up this population and in one week she is going to lose it all—just because of ONE stubborn bear.

The next couple of days are sad and very quiet. Every time Mrs. E spots a bird looking for one of the feeders she gets upset and a little madder at the bear. Mad because she can’t control this wild creature–or this situation.

But it gets worse. Mr. and Mrs. E return home after a day at the lake to find that Mr. Bear has destroyed the 2 remaining hummingbird feeders. Mrs. E has reached her tipping point. She doesn’t have any more ‘fight’ left in her. She sobs and sobs like she hasn’t done in years—if ever. She knows her tears are for something far bigger than losing her birds but she doesn’t stop to think about it. She feels the pain and cries until there are no tears left.

The next morning when the bear arrives, Mr. and Mrs. E and their dogs don’t scare it away. They watch from their den window as he finishes eating a few scattered seeds on the ground. Within 5 minutes he is on his way. No fuss, no muss—just ease. And since that day, he hasn’t returned to the feeders.

Here are 5 life lessons that I learned from my bear experience:

#1 Don’t assume anything. I assumed that bears don’t climb trees and wouldn’t be able to access the feeder in the tree. (picture of a bear in a tree) I also assumed that I would lose all of my bird population if I didn’t feed them for a few days. Wrong on both accounts. I have as many species, although the numbers are down. This isn’t all bad because it means less bird food (less expensive to buy) and fewer birds that die from flying into our windows

#2 Feeling into sadness or anger. I think this is the 2^nd time in my adult life that I have allowed to let the tears flow without stopping or suppressing them. I am learning to be okay with the darker emotions. I have a tendency to run away from them because they don’t feel very good and besides…strong girls don’t cry. But ‘suppressed emotions’ take a toll on the body—mentally, emotionally & physically. Science has proven that over 85% of our physical pain and illness is due to emotions stuck within our body.

#3 Turning the ‘effort’ knob down. When I realized that my effort or fight was wearing me down, it was time to turn down my effort knob. As Byron Katie says…”fighting reality is like teaching a cat to bark”. Since the day I relaxed and decided to work with the bear (after all we are living in his territory), he hasn’t returned. Go figure!

#4 Looking under emotions for a deeper meaning I knew that my tears over losing the birds were the tip of the iceberg. What is below them is the frustration and powerlessness in trying to control things in my external world. I should tape the Serenity Prayer to my desk to remind me…”God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference”. This bear experience is like trying to control the progression of my husband’s dementia. It is not to be controlled—only my response towards it.

#5 There’s always a pony in a painful experience—it takes time to find it. I found many ponies (or golden lessons) in dealing with a black fluffy bear. I’m discovering that every painful situation or experience in my life is another opportunity for learning and growth. It’s not fun going through them–but well worth it.

Last month I was speaking with a fellow colleague and telling her about my list and she simply said…”it  doesn’t have to be hard”. I thought for a moment and replied…”you’re right, it doesn’t have to be”. The lightbulb turned on. It’s my choice to make it hard or not. So before my next course in Colorado, I tested this theory out. Every time I felt tension in my neck or head, I simply turned down the imaginary Effort knob. I was able to get ready with very little stress and the actual time it took to organize everything was far less than I thought.

Gardening and weeding is another area of overwhelm for me. When I turned my knob down, I decide to weed for 10 minutes every morning when I take the dogs out for their pee. You should see the progress I’m making. Who says I have to spend hours doing it?

I am making this blog short and sweet because it’s less effort. I just want to remind you that when you feel like your are struggling–or life seems overwhelming–turn down your Effort knob.

Then ask yourself 2 questions:

1. is it really hard?

2. if the answer is Yes–then ask how can I make this situation easier? You will be surprised at how much simpler and easier life can be. As a bonus, you will feel more rested and happy because you won’t be dipping into your physical, emotional and mental energy reserves. Have fun!

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”.

Earlier this week Dave wanted to go into town and do a couple of errands. The roads are a bit icy so I drove him to the nearest city bus stop—10 km. away. When we are pulling up to the bus stop, Dave sees a young man waiting for the next bus. He is really pleased that he doesn’t have to wait long. Sometimes the wait is up to an hour.

Before Dave is out of the car, he asks the fellow “if he is waiting for the bus”. He politely says “yes” although I’m wondering if he’s thinking—what a dumb question. As Dave continues to slowly get out of the car, he proudly tells him… “so am I”.

Getting out of the car is getting more difficult all the time for Dave. He has to lift his legs with his arms and then puts both of his hands on top of the passenger door as he hoists himself to a standing position. Never a complaint…he just adapts.

After dropping Dave off, I turn my car around to head home. I wave as I go by and notice Dave wearing his ball cap with ear flaps (keeps out some of the noise and wind), and his camouflage knapsack to carry the 2 items he’s picking up at the grocery store. He gives me the biggest smile and ‘thumbs up’ because he is going on an adventure. Can you imagine looking like you won a million dollars just because you are getting on a bus to go to the bank and do an errand?

Such simple pleasures and yet sometimes life is too busy to notice. Looking back on the morning I realized that I was given a simple gift—a gift in the form of a smile and a ‘thumbs up’. That was worth more than a million dollars.

There is much to learn from those people with dementia…simpler life and simple pleasures.

Dave's thumbs up as he says goodnight!

I told her that I have questioned myself when friends ask how I’m doing. Can ‘joy, laughter, fun’ really go alongside living with dementia with all of the challenges and disappointments that go along with it? Honestly…yes.

I’m not denying there are bad moments–moments when I’m really tired of living with the constant challenges. I miss the intimacy in our marriage, the kisses that last longer than a peck, the hugs that really mean something–not a pat on the back of my shoulder like a young child. I feel sad when I see other couples holding hands or laughing and having intelligent conversations. Until 4 years ago, the running of our household was a joint effort. Where did my handy guy go? The one who fixes leaking toilets, water softeners, washing machines that break down in mid-cycle, loose taps, electrical panels that need replacing. Where is my help in the garden, or who runs errands while I focus on earning an income? Where is my life partner who can share the emotional load when our daughter has to have heart procedure for a longstanding cardiac rhythm problem? What about the pain when our son helps his Dad through a seizure and the grief in our children eyes as they watch their Dad slowly withdraw into his own world?

I feel all of these emotions and more. Finally, I’m okay with them because I know that it is normal and those periods will pass. Fortunately, I get to choose whether I stay there or not.

I love my life. Not the caregiving part, but the person I am becoming as a result. Caregiving isn’t my choice for the peak years of my life but this is my reality. I struggled and fought it for months. I tried controlling the progression of dementia, and what our life was supposed to look like in our 50s. When I finally ‘let go’ and accepted what is, I no longer felt trapped or angry that life isn’t fair. I have learned and grown too much to want to go backwards or to wish that my husband didn’t have dementia. My eyes are wide open to how generous people are and how wonderful it feels to ‘receive’ not just give. I have a new appreciation for being able to sit silently in meditation without the constant mind chatter; what it feels like to balance the ‘being’ with ‘doing’ instead of running around in circles and stressing about every little detail. I am more aware of living in the present moment with fewer worries. I am learning about unconditional love and I am really seeing my husband and children for who they are, instead of who I think they should be. I am letting them experience their own journey without the need to guide or ‘save’ them from mistakes. I am learning to love myself and to silence my harsh ‘inner critics’. I am doing the best I can.

I’m finally understanding that I don’t have control of external conditions. It isn’t the house, the vacation or the money that is going to make me happy. How I feel is an ‘inside’, not an outside job. Living with dementia is also teaching me about adaptability, creativity, patience, compassion & honesty that are helping me to live in a world, aside from caregiving, with less stress and more ease.

As I said to the reporter…some people might think this is being pollyannish, but it’s how I feel. I have worked hard (decades of studying personal development—books, CDs, courses & practice) to reach this place. Living with dementia and caregiving has pulled me to the lowest point in my life and I chose to step forward—one baby step at a time.

Her next question: “Okay, how do other people find the balance you have found?” I told her about my Dementia Hope Formula: a 3-step inner journey for finding hope, balance & joy.

For anyone who wants to learn more about the steps I took (and continue to take) to enjoy life, regardless of the circumstances, I would love for you to join me and sign up for my free newsletter: Dementia Hope Tips for Caregivers. This newsletter isn’t just for caregivers. It is for anyone who has challenges and wants to live their best life. It just happens that living with dementia has pushed me to learn them at a faster rate.

Amy : what has affected you the most about having a Dad who is different than the one you grew up with?

I realize all of the great memories growing up–the teaching about the wilderness, and the patience he had. I am grateful for all that my Dad has given me in the past. I know he still has wisdom and I haven’t been able to access it. I hold onto the memories of what he has taught me and I am grateful for it. I am still learning new things but it has taken a different path.

Amy told us a couple of stories of her memories with her Dad…

The first one was when she was a little girl and went grocery shopping with him. He was buying 2 (glass) bottles of Coke and she insisted on carrying them. Amy didn’t hesitate to let her wants known when she was a child. So her Dad said okay, and just as they reached the checkout stand, she dropped both of them. You can imagine the scene. Amy remembers her Dad picking her so she could bury her little head into his neck while the store employees (without a fuss) cleaned up the mess. Glad it was Dave and not me with her.

Another story was when she was 6 years old and she was watching her Dad build our small cabin by hand. There was one more window to go in and Amy insisted on helping him. Okay Amy, but you need to understand that this drill bit has to go straight in and straight out because I don’t have a replacement up here. (it was a boat-access cabin without electricity) Well…you probably guessed what happened. Straight in but not straight out and the bit broke. All her Dad said was okay, we will finish this on our next trip. He felt it was more important for his daughter to learn how to use the drill and take the risk of not finishing the job. Once again–thank heavens for Dave’s way of handling the situation.

Amy, what are you learning from this experience?

I only recently learned how to talk with the person with dementia. I used to get the update from my Mom or brother, Kyle. I had to learn not to be embarrassed or ashamed about speaking with the person affected with it. I didn’t know how comfortable Dad would be talking about it, but now I know that I can ask him anything and that it is going to be a straight-up honest, and truthful answer. I really value that. It is an ongoing process of being comfortable with it and some days are easier than others.

I am learning about the value of our family and how much closer we have gotten. I am aware of the precious moments when we are together, and how much I am learning from my Mom and brother about how to deal with this.

How do you deal with your feelings, such as anger?

There are times when I didn’t know how to articulate my feelings…

I remember in my first year of massage therapy school and they were teaching us about the stages of grieving and I thought, how dare they tell me how to grieve and try to sell books on it. There are definitely angry spots, but I am basically over the majority of it.

It helps for me to be aware of how I am feeling, talking about it, journaling, or even spending a day crying about it. I have learned lots from reading books on personal growth and how to release my feelings instead of keeping them inside.

Do you have a support group for your age?

I have a few friends who have gone through this with their grandparents. Although it is different having a parent with it, they understand some of what I am going through. My good friends accept and support me when I talk about how I’m feeling.

One of Amy’s last comment was…I was thinking about why all of these memories are coming up. My Dad, although he isn’t the one I grew up with, they (memories) bring peace and reassurance and love into my heart.

Precious memories, honesty, appreciation, awareness, unconditional love and acceptance are words that have come through for me after listening to my daughter. Sometimes it seems natural to protect our children but it is amazing and wonderful to watch their own journey unfold. A journey that may not have had this depth, if they didn’t experience the pain.

Personal Note:

If you haven’t already signed up for my Free ezine–Dementia Hope Tips for Caregivers, then I would love for you to join me. And don’t forget to send it to friends and family. Every 2nd Friday you will receive practical tips on creating more balance and joy in your life, as well as have an inside peak of our family living our best life with dementia.

Yesterday I woke up after 6 hours and I was cranky. Usually I like to stretch for a few seconds and think about one thing I am grateful for. But not yesterday. I made coffee and then I got crankier because Dave woke up at 5 am to get ready to go to the gym with his buddy, Doug. I was upset because this is my quiet time of the day and Dave was interfering with it. Then I became even madder because I had to drive him to meet Doug, and then arrange to pick him up later from the bus stop.

When I sat at my desk and tried to do some work, our youngest springer spaniel, Emma was pestering me to go outside. I thought she was trying to get me to play ball with her and I wasn’t going to be interrupted for that. She was persistent and as it turned out, she had to do ‘her business’.

I tidied the house enough for the cleaning ladies, and then headed out for a hike with the dogs. When I came home, the ladies said there was doggy doodoo (as they called it) on the carpet in the dog’s bedroom. What a ‘gagging’ mess. It was like mopping up fresh cow dung. After throwing out the towels, opening the windows and shutting the door, I huffed away.

Seven hours later, Dave came home. Instead of phoning me, he decided to walk home from the bus stop (10 km away). It took him 2 hours.

What did I learn today?

#1. I must take responsibility for my actions. I said yes to Dave the night before when I put myself in his situation–his driver’s license was taken away in 2009 due to his dementia. How else would he be able to meet his buddy? It was too dark to ride his bike. I had no right getting mad with Dave or the situation; I was the one who said yes.

#2. It was my idea to get a 2^nd dog, so I must remember that when I am upset about any of the extra care or responsibility.

#3. I used to think if I woke up cranky that my whole day was ruined. Not so. My mood and day turned around after my hike  after I had time to step back and look at it from a different perspective.

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