The next morning he wakes up at his usual 6:57 am and comes out of the bedroom with a big smile. He knows what this day means. After eating breakfast and doing a couple of his honey-do chores–filling the bird feeders and cleaning the dishes (needs constant reminders of helping me out)–he packs his bag for the big 50 km. trek into town.

As Dave is putting on his running shoes, he looks like he has just won the lottery. I wanted to capture this feeling so I grabbed my camera and followed him outside. As he is wheeling his bike along the sidewalk, I tell him to have a great day.  “I will–I’m already having fun”. Wow…simple pleasures, yet I get it. Dave’s bike is his ticket to freedom.

Two and a half years ago, Dave handed in his driver’s license. His dementia had progressed to the point where he was no longer safe on the roads. Unfortunately he didn’t agree. He didn’t understand why he shouldn’t be gazing at the moon over his left shoulder while driving in the wrong lane on a blind corner. After the doctor gave him the news that he was no longer licensed to drive, he was mad for a few days. “The doctors can’t do this to me! Don’t they know how much I love to drive?”

But here’s another reason why Dave is one of my greatest teachers. He didn’t stay stuck in his story. Within weeks, he had changed his story to…”okay, I can’t drive (even though he had to walk by his parked truck every day until it was sold) so I’ll find out about the bus schedules, I’ll ask people to drive me to town, I’ll start riding my bike. I remember the relief when Dave asked me if it was okay for him to be on the road on his bike. He wasn’t sure if the government would take his bike license away as well.

Postscript: After saying good-bye to Dave this morning, I came inside the house to tell my sister what Dave said. Her only comment was…”how do you bottle that kind of fun?” Dave’s got it figured out: he accepts the things he can’t change, has the courage to change the things he can, and the wisdom to know the difference.

Yes, I know what that feels like because 3 years ago I found myself swirling around in a pool of massive pain. Or should I say I was STUCK in my story…I was only 55 and my Mom and sister had recently passed away, my husband was diagnosed with early-onset dementia, and the clincher…our retirement savings (aside from Dave’s reduced teacher’s pension) was lost in high-risk investments. Oh boy, did I have a story.

But one day I was riding my bike when I had a big ‘moment’… who am I without my story? Who am I if I don’t have my poor-me tale to hide behind–an excuse not to go out with friends, a reason for not laughing and having fun, and a reason to gain sympathy and attention from others. I started sobbing because it was scary thinking about being stripped of how I was defining myself.

Later that week while making dinner, I had a bigger ‘flash’; one that was the tipping point for releasing my pain. I realized for the first time that I’m not trapped in my role as a caregiver. I’m free to walk out the front door and have someone else take care of Dave. I am free to choose to stay stuck, or to move forward. My reality is that my husband has dementia and I’m starting over financially in my 50s. It isn’t how I expected life to be but unless I surrendered to the facts, then I wouldn’t be able to move forward and find answers to my challenges.

It’s very interesting looking backwards because how I got unstuck is similar to Iyanla’s advice on Oprah. She says there are 3 ways:

#1 Tell the truth—what do you want and what are you willing to do; and not willing to do?

Answer for me: I told the truth about my reality and I committed to taking baby steps (exercise, meditate, life coaching…) to help me live a better life. I wasn’t willing to settle for a life filled with sadness, and I wasn’t willing to wish this phase of my life over.

#2 Ask for what you want

Answer for me: I wanted more peace,  and the feeling of joy when I jump out of bed while being grounded in my reality.

#3 Have a vision

Answer for me: My vision is that more family caregivers will realize they have a choice and that it’s possible to live a rich, peaceful life despite your circumstances. Since I have discovered ways  to reclaim my life–better than before–I want to share and teach others how to live it themselves.

Please note: if you are a family caregiver and you are feeling ‘lost’ or depleted by your circumstances, I would love to help you out. It’s as simple as signing up for my Complimentary Strategy session in the box above. The beauty is…it’s your choice!

It is 4:45 a.m., my absolute favorite time of the day. I am sitting with my tea, a book and a little ‘ginger boy’ named Clive snuggling (and purring) on my chest. Two months ago this skinny 5-month old kitten showed up on our daughter, Amy’s doorstep looking for affection.  She said he was more interested in staying in her arms than eating food. As it has turned out, we adopted him from Amy. We thought Clive needed a buddy so we rescued another little guy, Henry from a shelter. He is 16-weeks old (or thereabouts) and jet-black with the most adorable round face and silkiest fur. He is sound asleep on my lap with his legs wrapped around one of my thighs.

As I’m enjoying the feeling of these warm bodies and the silence of the morning, I can feel myself becoming emotional. Tears are quietly falling. I don’t want to scare or wake up these precious little creatures so I’m doing my best not to sob. But why the tears? What’s being triggered inside? Then I knew the answer…

Five years ago my husband Dave was diagnosed with Frontotemporal dementia (FTD). He was 57 and I was 53. FTD is a condition that begins in the front of the brain (emotional control) and side ( language centers).  Over the years Dave is slowly withdrawing into his own world—a world I don’t fully understand. Unfortunately his sensory system has gone awry and he is hypersensitive to touch and hearing. There’s no hand-holding or passionate kisses. No more putting my cold feet on his warm legs at night. And no more of those wonderful, ‘it’s okay I’ll take care of you‘ hugs.

I knew I missed body-to-body contact but I didn’t realize how much until this morning. For the past 7 weeks I have been carrying, rocking, &  snuggling these 2 little stray kittens into my neck. It feels so good to feel their warm fur against my skin. It seems they are filling my void for physical touch. Whenever I see a couple holding hands, kissing, or hugging tightly (not just a peck on the cheek and pat on the back) it reminds me of what I have lost with Dave .

There’s nothing I can do to change my reality. Dave’s dementia is what it is. But what I can do is savor every moment with these precious little creatures. I will be forever grateful for the day they came into my life. It’s no accident. I needed some physical lovin’ and the universe delivered big time. Thank you for the best stray kittens who give the BEST heart-and-neck hugs in the world!

Meet our precious Clive & Henry: (do you think they like a little lovin’ too?)

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”.

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.

Dr. Cacioppo wrote a book called Loneliness: Human Nature and the Need for Social Connection. He says that humans need a deep connection with the people around us and, without it, there is a higher risk for chronic disease and early death. There was a study in 2007 at the Rush Alzheimer’s Disease Center that showed that lonely people were twice as likely to get Alzheimer’s disease late in life. In a 2005 study at Carnegie Mellon University  lonely first-year students showed a weaker immune system when receiving the flu shot.

So how does this relate to our journey as caregivers? When my husband, Dave was initially diagnosed with frontotemporal dementia four years ago, I felt alone. For the first couple of years I was searching for other baby boomers going through a similar situation. I felt disconnected from the world because I didn’t know how someone could possibly understand the challenges of caring for someone with dementia? The burden was immense and very lonely. And…I was depressed and getting sick easily.

It was hitting rock bottom that shook me out of my daze of  this lonely existence. I softened my tough exterior and starting asking and accepting help–without feeling weak or that I have to give something in return. I came out from hiding and reconnected with close friends; and I made it a priority to spend more time with Dave.

Dr. Cacioppo says it is essential to give each other complete attention, to aim your noses right at each other and have deep, meaningful conversations.

Hmm…but how do I do that with a husband who talks about surface stuff? If Dave isn’t asking me 100 questions, then he is talking about which way the clouds are moving, or how many birds in the tree. So yesterday I did a little experiment. Every afternoon I sit with Dave for a couple of hours before making dinner. Only I always have my iPad on my lap– constantly checking emails, or playing video games like Pocket Frog or Tap Zoo–mindless but fun games.

Yesterday I left my iPad in the den and I sat across from Dave—nose to nose. We chatted about the birds, the clouds, about people walking their horses on the road and other superficial stuff but it was enjoyable. I asked Dave if he noticed whether something was missing and he said…you’re usually sitting over there (on the couch) and working on your machine (iPad). He said that he didn’t mind because he is proud of what I’m doing to help others. I confessed that I was playing games. His next comment…I’m really enjoying talking with you. We don’t do this very often.

He’s right. Often when I sit with him it is quantity over quality. And the same thing applies for my kids or  when I’m speaking with my friends on the phone. I love that image…nose to nose. Think about that the next time you are spending time with a loved one–quality over quantity and nose to nose!

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?

Note: if you don’t want to miss out on the bi-weekly tips for caregivers, then please sign up in the upper right hand corner. Would love for you to join us!

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.