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?)

This past week I had one of life’s many lessons in dealing with my husband Dave. He has Frontotemporal dementia and as it progresses, he is less motivated to do any activities outside of his jigsaw puzzles or exercise. I’m glad that he is still capable of doing these activities but the reality is that I need help to maintain a house, garden, pets, and car while I work full-time.

As Dave’s physical and mental abilities change, so does his honey-do list. There are a few jobs that I am holding firm and don’t want to put on my list. One of them is plowing our steep driveway with the ATV & snowblade.

Last Sunday we had our first snowfall and I asked Dave to clear the snow. He said he couldn’t do because it was still snowing. I could count the snowflakes and there was less than 1 mm of additional snow. He would do it in the morning so I let it go. Monday came and went. So did Tuesday, Wednesday and Thursday…filled with excuses. By Friday I was losing my patience. I begged him to do it before I left for a 24-hour visit with my sister. I didn’t want him operating machinery while I was away. Once again he decided NOT to do it and went for a nap instead. I could feel the anger building and as silly as it sounds, I wondered if I could physically force him onto the ATV. After he shut the bedroom door, I realized that I was more upset because I couldn’t control this situation than I was about the snow and ice on our driveway. It’s funny how life lessons keep slamming me in my face. After relaxing my shoulders, taking several breaths, and gaining a different perspective, I remembered the Serenity prayer: “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”.  Boy…it only took me 5 days to remember this one!

What did I learn this week?

#1 I can’t control circumstances and people outside of me; only my response to it. It seems that I need to be reminded of this often. How easily I forget.

#2 Recognize when I am struggling against something/situation (feel the tension in my head and neck) and ask myself…”how can it get any better?” In this case, I will hire a teenager in the neighborhood to help me out.

#3 Step back and observe my reaction; breathe, and ask myself “what is the worst case scenario, if our driveway doesn’t get plowed?” Puts my drama in perspective.

#4 Dave isn’t acting this way to push my buttons. I’m allowing them to be pushed. As Steve Chandler says “focus on strengthening the inside of focusing so much on what is missing from the outside”.

#5 Life is full of challenges and every experience (good or bad) teaches me something. Not obvious at first but after the tension (and drama) settles down, it becomes clearer.

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”.

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?

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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.

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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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?

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.