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.

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”.

Living in the wild has its ups, downs, good and bad. I love living in the country but it isn’t always rosy. Just before letting our kitty kat in the front door, I went searching for a bird feeder that Baby Bear had absconded with. Yesterday afternoon he made his first visit of the year. As he was sitting under a large pine tree— happily munching on the bird seeds—our springer spaniels were barking and ‘royally’ upset that some furry beast was playing in their backyard.

I know we are supposed to take down our bird feeders when bears come out of hibernation but I can’t bring myself to doing it. Dave and I love watching the 200-plus birds eat, play and sing on our property and I don’t want to lose our entertainment. So I’ve decided to keep a vigilant watch during the day (just scooted him away about 5 minutes ago) and bring the feeders in at night.

Unfortunately last night I left one of them outside and baby bear found it. I didn’t think he would find this small feeder hidden by bushes and a boulder but my ‘assumption’ was wrong. Guess I forgot about their acute sense of smell.

Okay so what lesson did I learn from my baby bear story? I was reminded…don’t assume anything. This is the 2nd Agreement in a book written by Don Miguel Ruiz–The Four Agreements. Ruiz says we don’t know another person’s story or what is truly going on in their life. For example, have you ever been upset when someone doesn’t answer your email for weeks–sometimes never? Maybe they are on away, or in the middle of a personal crisis and answering emails aren’t important. Or how about if someone doesn’t say hi or smile at you in the swimming pool? Maybe they aren’t wearing their contact lens and can’t see past their nose (slight exaggeration of course; can you tell that it has happened to me?)

Another example of why not to make assumptions happened last night. I was chatting on the phone with a fellow care-partner whose husband has the same diagnosis as my husband’s—frontotemporal dementia. We were laughing and enjoying each other’s stories and towards the end of our conversation she said something that surprised me. After reading my blogs and articles she assumed that I have my life completely together. I hadn’t really thought about it  but I did admit that I’m feeling more peaceful and happier than before Dave’s diagnosis. She didn’t realize that I go through the same emotions as her. It was a relief to know that I feel frustrated when I have to deal with ‘car details’ or household breakdowns–Dave used to take care of those things; or that I get mad over small things like Dave not answering the phone fast enough; or feel sad because I miss holding hands with my husband (his skin is super-sensitive). My friend realized that what she is going through is normal for anyone going through a major loss or change in their life. I am pretty sure she was glad that her assumptions were wrong. (Of course I shouldn’t assume that) Look how easy it is to do.

So the next time you are tempted to assume something–even if you are 100% sure–check it out before using your precious energy. It might surprise you when you do.

As I’m leaving for the airport the next morning, I notice that I’m limping. Darn it–maybe I should have worn softer shoes. I did the best I could to ignore the pain and to walk normally–but it wasn’t happening.

I didn’t realize how tiring it is to walk in big airports when both of your feet don’t work properly. By the time I arrive at the hotel (12 hours later) I’m feeling a little cranky. My coaching course on energy and intuition starts the following day, and I’m not feeling happy about being in a room of high energy people. All I can think about is that I want to be home with my pets–Marty, my ginger cat with white boots, and Riley & Emma, our springer spaniels. I would much rather be sitting outside on the deck with my husband enjoying the sights and sounds of the spring birds than sitting in a lobby surrounded by cement.

Dave, Marty & Riley

Now that my minor life trauma is over, I had an aha moment when I realized that something as simple as a sprained toe requires going through the 5 stages of grieving. On Wednesday I was in ‘denial‘ that I had an injury–similar to my response when the doctor gave us the news that my husband, Dave has dementia. Then I went into ‘bargaining‘–maybe if I don’t pay attention to the pain it will go away. With Dave I did everything I could to help nourish his brain so that maybe his dementia will slow down, or even be reversed. Then comes the ‘anger‘–I wanted to be home, or at least go for a run but I was stuck in a hotel. I didn’t ask or expect to be my husband’s caregiver in the prime of my life. The 4th stage is ‘depression’ or sadness because I couldn’t go and ‘run off’ my emotions. I felt trapped by the demands of living with dementia and was barely existing from day to day. And finally the 5th stage, ‘acceptance’ . I can’t go for a run but at least it is only temporary and I’m still able to walk–even if it is with a limp. My husband has dementia–this is my reality and now what can I do to help myself feel alive again.

It is amazing that something as small as a sprained toe can disrupt my life as much as it did. But it is also reminded me that it is normal to grieve any loss or change–big or small–and to be more patient with the process.

I was reading an article the other day about a study with people who have terminal cancer and are given 6 months to live. Do you know why a significant number of them go into remission? Because for the first time in their life they ‘let go’ of pleasing other people. They aren’t concerned what people will say or think about them if they don’t wear makeup, or if they forget to shave before going to the store, or if their car is a 20-year old  rusty wagon. They are beginning to understand that all of the money in the world, all of the material ‘stuff’, isn’t what makes them happy. Living every day–to the best of their ability—is what is fulfilling. There is no more procrastinating about taking their dream holidays; there is fewer of the ‘should-do’ something, and more of the ‘want-tos’.

Over the past year I have had the good fortune to be part of someone’s life that is in this situation. His name is Rick Hill–my long-time curling coach. In November 2009 the doctors told Rick that he has 5 weeks to live. He has Stage 5 prostate cancer that has spread throughout his body. But Rick wasn’t ready to settle for this news and found another team of doctors who gave him hope and a plan for living longer. It is now 15 months later and Rick is stronger than ever. In between bouts of chemo and his part-time jobs, he is speaking to other people with cancer and encouraging them to get out of bed and do something they love to do. If he isn’t speaking at the cancer clinic, then he is coaching golf or curling students and inspiring them to be the best they can be. He has been golf pro for almost 50 years–it’s in his blood.

When Rick wakes up in the morning, he is grateful because he has one more day to help and serve others, and to ‘live on purpose’. One of his latest missions has been helping 5 of his neighbors who are coping with dementia at home. Every 2^nd Friday when my newsletter—Dementia Hope Tips for Caregivers—is published, Rick prints off 5 copies and hand-delivers them—even if he is feeling tired and needs a nap. When Rick arrives at their door they are reminded about how much someone cares, and that they aren’t alone. In fact, Rick even volunteered to be their team captain on the 14-day brain challenge in one of my recent newsletters. For 2 weeks, the couples connected with Rick on a daily basis on how they were managing. Then Rick would sit at his computer and update me with their progress—including his own. I’m happy to report they all passed with 100%.

I’m so fortunate to have 2 men in my life–Rick, (below left) who has cancer, and my husband Dave (below right) who has dementia. They are constant reminders for me to live fully today. Since there are no guarantees of tomorrow, I keep asking myself…am I doing what I love to do today? How about you?

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Two men looked out from prison bars

One saw the mud, the other saw the stars

When Thelma reread these lines a few times, she felt ashamed and decided that she would try to find the good or the stars in her present situation. She made friends with the natives and took an interest in their weaving and pottery. She learned about the different forms of cacti, the habits of the prairie dogs, and searched for seashells left behind hundreds of years ago. Her life transformed. The Mojave Desert hadn’t changed but she had.

This same situation is happening to me. Two years after my husband, Dave was diagnosed with Frontotemporal dementia, I was sick and tired of the challenges of living with dementia and I wanted to quit. I was waking up in the morning feeling sad, getting sick more often, and resenting the fact that Dave was managing okay and I wasn’t.

The mounting pain inside finally took me to my breaking point. I was standing in the kitchen making dinner and hating every slice of the cucumber. I wanted to scream and walk out the front door letting someone else take over my job. As I bent over to cry, I realized that no one is chaining me to this house. I’m free to walk out. In fact I’m free to choose how to live my life. I realized that I could continue feeling sorry for myself. After all I’ve been stripped of my dreams and stripped of the husband I have known for over 30 years. Or I can accept my reality and start doing things I haven’t done in the past. This was the moment when I stopped wishing for this part of my life to be over. This was the time when I started searching for what’s good about living with dementia.

The next day I came out from hiding and phoned a girlfriend to go out for lunch. I had shut myself off for 2 years because I didn’t want anyone to see that I was crumbling inside. I started writing in my gratitude journal every night and that changed my focus from what I’m losing, to the abundant gifts all around me. I just had to open my eyes to them.

I also started watching and learning from Dave on how he is dealing with his dementia. After all, he is the one losing more than me…his memory, his driver’s license, and his ability to recognize longtime friends. Every day he wakes up with headaches, and gets dizzy when he stands up, but I never hear him complain. How does he do it? I don’t even see Dave throw things out of frustration or yell in anger because he can’t do many of the things he used to do—like driving which he loves.

I am curious about how Dave processes the changes and I’ve asked him if he is angry about having dementia. His answer is always the same…”no, would that make it any easier? I have it and I have to deal with it”.

From the beginning Dave has never fought his reality. He is accepting and surrendering to it—not giving up, but doing the best he can with what he has. He has taught me about simple pleasures in life like sitting still and watching the birds or the clouds. He has taught me about patience when I’m on the phone and listening to the 10^th teleprompt of our telephone provider. He has taught me about being more present and living for today—letting go of worries about tomorrow and regrets from yesterday.

You see I have found what’s good about my life but it took a mountain of pain to push me to find it. Even though care giving is the most difficult time in my life, it’s also the most rewarding. I am grateful for the person I’m becoming because when I look out from behind the bars I’m choosing to look up and see the stars.

To no surprise, Rule #1 is Exercise. Medina said…”from an evolutionary perspective, our brains developed while working out–walking as many as 12 miles a day”. He said we aren’t made to sit at a desk for 8 hours and we crave that ‘active’ experience. It is no wonder that kids act out in school or many office workers are cranky and tired by the end of the day. Several studies have shown that people who exercise outperform ‘couch potatoes’ in long-term memory, reasoning, attention, and problem solving. You can reduce your risk of developing Alzheimer’s by 50% by walking 20 minutes a day. Exercise increases blood flow to the brain so it can deliver more oxygen and fuel while removing the waste products. It also releases 3 neurotransmitters—serotonin (lacking in frontotemporal dementia), dopamine (lacking in Parkinson’s) and norepinephrine that are critical for optimal mental health & happiness.

While reading this chapter, I had an ‘aha’ moment. As my husband’s dementia progresses, so do his passion for walking. It seems that as the higher, more complex parts of his brain are affected, the simpler life becomes. Dave has less brain chatter and fewer worries. When I was driving him to the bus stop this morning he was looking forward to his ‘day in town’. I was telling him about how ‘natural’ it is for people to walk for hours every day. When I looked over at him he was crying. He has increased sensitivity to sounds so I thought maybe my voice was too loud. I asked what was wrong and he said, “I didn’t know that it was normal to walk as much as I do”. When I asked if it made him happy–”yes, that is all I can do—natural things”. I think what Dave was really saying…he was happy to fit in and be ‘normal’ for the first time in  years.

Every day I learn a little bit more about the brain from watching Dave, reading books, and experience. The scientists know less than 15% about how the brain works, but the studies are consistent…it’s never too late to do something about it. It’s as simple as stepping out the front door.

Before the show airs, I like to do some prep work but I was having difficulty with this one. Why? Because by default, I run away from the feeling of sadness. I grew up in a family where we were reprimanded for crying. I didn’t want people to think that I was weak and couldn’t  handle what life was giving me. I was also afraid that if I focused too much on the pain and grief of caregiving, I would get ‘stuck’ in that stage. I didn’t want to be depressed, and I definitely didn’t have time for it.

But 2 years ago when I hit the lowest point in my life, I couldn’t run away from the sadness any longer. I knew that I had to do something different because I couldn’t shake the feelings of being trapped and sad. I started with baby steps like exercising every day, writing in my gratitude journal and most importantly, giving myself permission to sit still long enough to really feel the pain. My tears washed away some of the layers of my childhood beliefs, and gradually the dark cloud overhead dissipated. The light was beginning to shine through.

Looking back on that time, I realize it was normal and critical for me to go through this stage. If I wanted to reach the 5th stage of acceptance of Elizabeth Kubler-Ross’ 5 stages of death & dying, then I needed to get in touch with the pain that I was running away from. I recognize that any change–small or large– is a loss or a death. For me it is the loss of a life I expected to be living in my 50s, and the slow loss of a husband I had known for over 30 years. Honestly? I don’t always like it but I accept it.  And… I’m happier , healthier, and more peaceful because I had the courage to face what I didn’t want to face–sadness and depression.

Note: I just realized that it is Valentine’s Day (you can tell that isn’t in my forebrain) and what a day to write about sadness. Oh well, I’m going to publish it anyway because it is part of life. Happy Valentine’s Day !

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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!

This morning while riding my bike along our beautiful country road I had an AHA moment. As I was gliding over one of the cattle guards, I had an overwhelming sense of freedom. I thought of how Dave must feel when he hops on his bike and rides into town to pick up 1 or 2 items. His bike is his new ticket to freedom. I wonder if this is one of the reasons why Dave isn’t complaining as much about not driving. Time has healed some of the pain, but I also believe that he has found his own little piece of freedom to fill the void.

ticket to freedom

There are times when living with the challenges and unpredictability of dementia feels suffocating. But it doesn’t take long to get a dose of  ‘oxygen’ and start breathing easier. It’s as simple as stepping outdoors.

How about you? What’s your ticket to freedom?