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?)

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”.

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 !

Don’t forget to sign up for my newsletter ( see the box in the upper right hand) for more tips on How to Live Your Best Life!

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?

But before starting my holidays I want to share the best Christmas & birthday present ever. (Amy’s is December 23^rd and mine is December 25^th). Last night Amy and I flew home from Victoria, BC where Amy underwent a heart procedure (ablation) for an arrhythmia she has had since she was 6 months old.

I have lost track of the number of times that Amy would walk into our bedroom in the middle of the night and quietly say…”Mom, my heart”. My own heart would drop into my stomach. Off we went to Emergency where they would stabilize her heart rhythm and pray that it wouldn’t happen again. Despite beta-blockers, the episodes continued.

Amy has undergone 3 previous ablations with minimal success. Well I am happy to say that for the first time in 26 years, the surgeons walked into the recovery room with a smile on their face and the first words out of their mouth were…”WE GOT IT!” They said it was in a rare place and they were lucky to find it. You can only imagine how many times I have replayed that scene in my head.

So I wanted to share this fabulous news and I also want to wish every one of you a happy and restful (it’s possible) holiday!

PS. A HUGE thank you to Dr. Sterns (and his team) in the Cardiac Unit at the Royal Jubilee Hospital in Victoria, BC.

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.

Many of my friends reassured me that I was strong enough to handle it. When I found myself crying in my office or out on a walk, I beat myself up because I’m supposed to be strong. You see-I grew up being told that crying is for babies. I wouldn’t accept help from neighbours or friends because it would be showing my weakness. I can handle. I can do it all!

If only they knew how much I was crumbling inside. I kept it a secret–even from me. That was until one day in the kitchen when I reached my breaking point. I remember thinking I don’t want to live like this any more. I don’t want to wake up feeling sad and going to bed sad. I don’t want to be in the group (40-75%) of caregivers who become seriously ill or worse yet, the 30% of caregivers who pass away before their spouse. I was sick of pretending that life is grand when in fact it was the most difficult time in my life.

Phew! Once I woke up to my reality then I was free to choose what to do about it. Do I stay with my ‘poor me’ story or do I start doing things that I haven’t done in the past? I just wanted to feel alive again. I didn’t want to waste any more precious time wishing this phase were over.

I started with baby steps. Every day I wrote in my gratitude journal 5 things I am grateful for; exercised 6-7 days/week; and meditated for 15 minutes in the early morning to clear the chatter in my brain. Slowly, the heavy cloud overhead started disappearing and I added more steps…journaling, yoga, and better nutrition.

When I gave myself permission to cry and be angry that life isn’t what I expected, I felt better. According to Abraham’s Emotional Scale, anger and resentment are better than sadness & depression. Anger restores some of our power and gives relief to sadness. It is a self-surviving action versus the powerlessness of depression.

After 2 1/2  years of taking care of myself, and having the faith that I will enjoy life-regardless of the circumstances-I have reached a peaceful, happier place. I’m no longer denying my reality–wishing for what was, or what should be. The difficulties of living with dementia haven’t gone away, but the pain has. Author Byron Katie, said our pain comes from not accepting our reality or what is. (Just like my patience as my kitty cat keeps walking across my keyboard and purring because he wants some attention. acr5ooooooo66555t= a little note he wrote as he walked across the last time)

PS – Great news! Dementia Hope has been nominated for two awards!!  Both our blog and our newsletter (which you’re reading right now) are up for a SeniorHomes.com Best of the Web award for excellence in content related to caregiving and dementia.
 
I am so thrilled just to be nominated.  To win would be super exciting.
 
So, if you enjoy and gain value from this newsletter and our blog please vote for the newsletter here:
http://www.seniorhomes.com/p/dementia-hope-tips-for-caregivers/
 
And vote for the blog here:  http://www.seniorhomes.com/p/holly-eburne/

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.