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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Well, it was déjà vu because this morning we were running along the same stretch of road and I made a comment about the weather. Early this morning it was rainy and cold, so I was surprised at how quickly the weather was changing. When I mentioned it to Dave, he said…”look at the clouds coming towards us”.

I doubt he remembers our conversation 2 weeks ago about the rainbow of colours around the sun, but I found it interesting we were going down the same road–literally and figuratively. After he mentioned the clouds, I immediately said they could be going away from us. He carried on talking and didn’t agree. That was the end of our chat about the weather—for now.

As we turned to run home, we were going against the wind but it wasn’t as bad as I thought and I said so. Dave told me to ”wait until you get around the corner and then you’ll see”.  I didn’t say anything more… whom I am to argue. That is his truth, so what’s the point. I read somewhere that you will never win an argument with someone with dementia and I agree. I didn’t realize how often I needed to have the last word in a conversation. That was before Dave’s diagnosis. Living with someone with dementia is giving me tons of practice at letting go of needing to be right or having the last say.

In case you were curious…the wind didn’t pick up, but I didn’t bother to point it out. Ahh–one more day, and one more opportunity to stay in the flow of living with dementia.

I would love to hear what you are learning from your challenges. Are they similar to mine?

PS. If you are wondering why we talk about the weather so much, it happens to be Dave’s favorite topic. He watches the weather report at 7:38 am, 7:51 am and 5:18 pm. Heaven help me if the final game of the Olympic hockey game is on. The weather trumps that!

Another time I asked Dave to take out the kitchen garbage. It was overflowing and very stinky. He said he couldn’t smell it and besides, there was lots of room left. Maybe for a coffee filter. When I realized that arguing was futile, I ended up taking it out in a huff, almost ripping the bag in the process. After that, I have learned to save my energy and take the garbage out when it is full.

The frontal and temporal lobes of the brain are affected in FTD which explains why Dave has decreased common sense and judgement. He likes to take our springer spaniels for long hikes in the woods but when they come back the dogs are filthy from head to paws. If I am not standing there with a hose and towel, he lets them run inside the house without thinking of the mess on the floors and furniture. I know the Dog Whisperer would have a comment about dogs on couches.

And then there are memory issues. There are times when I ask Dave if he has done something (eg. wash the pond filter) and he says he did, only to find out that he didn’t. I used to think he was lying but now I understand…he thinks he cleaned it. Either that, or he forgets if he did it, so he says yes because he doesn’t want to go outside and check . Again…why waste my energy on trying to argue with him or getting mad? These situations are out of my control. I can only control my response to them. The longer this journey of caregiving continues, the more I see how important it is to save my energy for emergencies, and for my health which impacts Dave and our children. With lots of practice, I am doing a better job at looking at the bigger picture. There are 3 questions I ask myself…will it matter in 3 weeks, in 3 months, in 3 years? If not, let it be.

Living with dementia continually tests my ability to let go of fear. It challenges me to let go of worries such as: will I be able to afford Dave’s care in the later stages; will I be able to handle the increasing responsibilities; or will it take a toll on my physical and mental health. It challenges me to stay present and live for today, so that I can enjoy what I have right now.

Every time I face a fearful situation, it is a chance to ‘rewire’ my brain to respond differently. These tests are not always about living with dementia. I had a situation this past winter with our dog and a pack of coyotes…

It is 8:15 pm (pitch-black outside) and I am taking our Springer spaniels out for their nightly pee. They are hunting dogs with an acute sense of smell. Our youngest dog, Emma, catches the scent of a coyote and charges after it. I scream and whistle–pretty feeble whistler, but somehow I manage. By the time she comes back, my legs are jelly and my heart rate is over 200. Within seconds of coming inside the house, I hear a pack of coyotes yipping from the same spot where Emma had chased it.

Their game is to lure prey into their circle for an easy attack. My mind is racing because I keep thinking about what ‘almost’ happened, and what ‘could’ have happened. It takes me a few minutes and several deep breaths to calm down enough to realize that everything is fine. Emma is alive, and safe inside our house. Byron Katie’s message is playing loudly inside my head…fear is only what I think. When I really listen to my inner voice, I feel relief as I am letting go of the ‘emotions’ attached to my story.

Living with dementia is a much larger story than the dog-coyote one, but the lesson is the same. When I feel sick to my stomach because I have flashes of what the ‘end’ stage of this disease looks like, I bring myself back to the present moment. Right now, Dave is healthy and relatively independent. He is able to dress and take care of his personal care (with reminders to change clothes and have a shower every few days); he is able to work on his jigsaw puzzles; and he can still communicate, although his conversations are simpler.

There may not be hope for a cure for Dave’s dementia, but there is hope for a quality of life–we are living it. In many ways I am grateful to dementia and the challenges it presents because it is forcing me to let go of what I can’t control, and to let go of fear which is…”a story of a future, projected from our past.”

There is no denying there are difficult times, or that there are moments when I don’t think I can handle one more change, one more responsibility. But I am finding it easier to move through those periods simply by changing my perspective. When I get frustrated because I have to remind Dave 5 times to dig out a small dead bush, or when he says he has cleaned the pond filter only to find out it is clogged with algae, I stop for a few seconds and ask…’would I want to change my life for Dave’s? Would I want to be the one waking up with headaches? The one not recognizing people I have known all my life, or the one walking 2 hours to the nearest bus stop because my driver’s license has been taken away? There is no contest. I wouldn’t want to be living with his challenges for a second. I love being able to work, chat with friends without struggling to find the words, and being free to drive away from home.

A week ago we were driving to Vancouver, BC for the 10 km. Sun Run when Dave looked at me and said “I am really enjoying this trip. Thank you for taking me”. His eyes and face sparkled, and he sounded like an excited child on an adventure. It made me stop and think about what life looks like from his perspective. He reminds me of the simpler things in life—to be grateful for what we have in this moment, instead of wishing it was different or thinking…what if he didn’t have dementia.

Last year I reached a summit on this journey with dementia when I wanted this phase of my life to be over. I wanted to get back to living a ‘normal’ life for someone in their 50s. But then I stepped back and started thinking about something other than my hardships. I started seeing how Dave is managing; how he is accepting, rather than resisting, his life; how he is living every day to the best of his abilities. I became aware of how other people are  living with their challenges. When I opened my eyes and heart, it didn’t take long to find other people dealing with situations far worse than mine. I no longer live and wish for the future because this is wishing my life away. I would miss learning lessons such as surrendering or ‘letting go’ of things I can’t control and I wouldn’t be experiencing the true meaning of unconditional love.

While flying home from Detroit today, I sat beside an 80-something gentleman who said “attitude is everything”. He went on to tell me about a David and Goliath story. An Israeli looked at the Goliath and said “he is so big, how can we ever kill him?” David looked at the giant and said “he is so big, how can we miss?”

Perspective, positive attitude or whatever you call it, can turn any situation around in seconds. For me, it has been ‘key’ in finding  peace and ease  in the world of dementia.

©2010 Holly Eburne

There was a puppy born on Christmas Eve, 2002, with 2 legs. His mother, the breeder and his first owner didn’t think he would ever walk and thought he should be put down. But along came Jude Stringfellow, a teacher, and someone who had the belief that this pup would walk some day. She named him Faith. Through coaxing and hard work, Faith was able to balance on his hind legs and walk by 6 months of age. Jude has given up her teaching position and is traveling the world with Faith to show people that you don’t have to have a perfect body to have a perfect soul.

“In life there are always undesirable things, so in order to feel better you just need to look at life from another direction. “  This is what I did when my husband, who has Frontotemporal dementia, recently lost his driver’s license. In less than a week, I am able to list more good things, than not, about our new situation…

1. I will never had to nag him to keep his eyes on the road (no more ‘white knuckling’ drives)
2. Dave will be able to watch the scenery 100% of the time, without a backseat driver; he loves the new views
3. We will maintain, insure, and put fuel in only one vehicle
4. Dave will become fitter because he will do more walking and biking
5. We spend more time together doing chores (he pushes the grocery cart and lifts heavy items for me)
6. It encourages me to be super organized as I fit in the extra ‘running around’ that Dave used to do for me
7. It gets me out of the house more often because I know how much Dave likes, and needs variety to his days 
8. Dave is looking forward to bus trips to Vancouver to see his family; it is a new adventure for him and it will give me time to be alone

Both Dave and I have dreaded the day when Dave would lose his license and yet, life is good when you ‘look at it from another direction’.

Since my husband, Dave was diagnosed with Frontotemporal dementia 3 years ago, this book is another reminder of one of the biggest lessons I am learning…accepting what is.

In one of her stories, Katie describes a conversation with Peter, a 43 year old with dyslexia. He grew up wanting to cut off his right hand because he hated his disability of not being able to read or write. People in grocery stores would tell him to hurry up because he was slow writing out a cheque. He was called stupid and dumb when he would ask someone how to spell a simple word.

Katie asked him if there was anything peaceful about having a ‘need’ to know how to read and write…

“No”

“Now give me 3 reasons why your life is better because you don’t read and write”

Peter said “Well, I don’t read a newspaper so I don’t have to listen to all of that bullshit every day (politics and the economy).”

 Not reading also gives him more time to be creative (he made the boots he is wearing). And since he is unable to help his son with his homework, it teaches his son to be responsible for his learning.

Peter started seeing the gifts of dyslexia despite his belief that he is severely handicapped.

On a smaller scale, I was out for a run with Dave this morning and it was -24 C.  I thought I dressed warmly enough (the only exposed part of my body was my eyes with icy eyelashes). About 15 minutes into our run, my toes were numb and painful.  I wasn’t enjoying myself at all. Remembering what Katie said, I admitted my pain and suffering. Since I was at the half way point of my run, I knew that I would have to accept and live with it until I reached home. After a minute of whining, I let it go–there was nothing pleasant about holding on to that feeling. I started relaxing into the run. I noticed the silence as I ran on the snow; the blue sky with only a few clouds; and I thought about how lucky Dave and I are healthy enough to run in these extreme temperatures.

Within a few minutes, the pain in my toes was gone. I think they were still numb ,but my run was more enjoyable.

There is no denying that someone with dyslexia has pain when they can’t read and write. There is pain in frostbitten toes, and there is pain in living with dementia. But accepting it for what it is, instead of resisting and fighting it, makes life easier. As Dave says when I ask him if he is mad that he has dementia…”No, why would I? Would that make it better?”

Living with the challenges of dementia is giving me a crash course in surrendering and being at ease with ‘what is’. Learning to let go of small incidences throughout my day is giving me more peace every day and I wouldn’t trade my life for the one I had before Dave’s diagnosis.

For the past 2 days I haven’t been feeling well—the common cold. When I am not well, I tend to look at life from the bottom half of the glass. Despite my husband having frontotemporal dementia, I appreciate  lessons about patience, flexibility and surrendering to what life is giving me, but there are moments when I am tired of them.

Yesterday I was miserable and it wasn’t until a call from a girlfriend that I snapped out of it. During our chat she asked how Dave was doing and I was telling her some of the funny things he says. (Frontotemporal dementia affects language skills) We were laughing when I was giving her a sample of Dave’s new language. When he was trying to think of the word ‘Halloween’, he called it a “social where people go from room to room.” Last week I asked Dave for a weather report and…”it is going to be mostly sunny, with lots of clouds”.  After a trip to the store, Dave was describing the ‘lady at the toll booth’ (cashier). He went hiking on a new trail with the dogs and saw lots of  ‘helmuts’ (cows’ skulls). Another funny habit of Dave’s is when he announces that he has to go to the bathroom. It reminds me of when our kids were small. Since he forgets to flush the toilet, I scurry around when guests arrive to make sure the coast is clear. My girlfriend, a mother of 2 young children, says she does the same thing.

Dave is doing well with his dementia and loves to have variety to his days. This morning he is excited about a 4 day camping/hunting trip with his best friend, Doug. Our son, Kyle, spent yesterday afternoon packing all of his Dad’s gear. The only thing he left for Dave to do was to pack a change of clothing. (Kyle hasn’t figured out that changing clothes is not a priority) As Dave was getting ready to leave, I noticed he was wearing the same shirt and pants for the third day. I told him he needed to change because it would be 7 days wearing the same outfit. He said it didn’t matter because they would be getting dirty anyway. With the smile of a child, he proudly points to the picture of the moose on his shirt and says “Doug gave it to me and we are getting a moose on our trip.”

There is an innocence to Dave which is reminding me that life can be fun regardless of the situation. After he left for his trip I turned to my son and said…”sometimes I think Dad’s life is easier and simpler than mine” Without pausing he said…”not sometimes, Mom–all of the time.”

In my earlier posts, I wrote about being on a rollercoaster of emotions with my husband, Dave, who has Frontotemporal Dementia. Every day I get plenty of practise on ‘setting myself free’ . To give you an example…this morning I was mad (actually furious) because my husband, Dave, wouldn’t take out the garbage. He doesn’t seem to think the garbage is full enough. (Not sure which bag he is looking at because the one I am referring to is spilling over the top) I tell him that it stinks. He says it doesn’t. Well, I don’t need to be hit over the head with a 2 x4 to realize this is my problem, not his. Sighing as loud as I can, I rip the bag out of the container, and stomp out to the garbage bin. Within seconds I realize what I am doing. What a waste of energy. So I say… “hello frustration, I see you; you can’t hide” I repeat it a few more times, until I feel myself calming down, and I actually start smiling. To release it further, I put all of this negative emotion into an imaginary bubble out in front of me. I have a 2nd bubble to the right of it, with a golden screen between the 2 bubbles. A magnet in the 2nd bubble draws all of my power out of the 1st one (through the golden filter)and it starts filling with sparkling, brighter energy. After moving all of my power out of the 1^st into the 2nd bubble, I bring the 2^nd one back into my body and pop it–releasing the dynamic energy within. Bubble #1 is now tiny. I pop it and release it to its neutral form. This takes less than 10 seconds because energy moves faster than the speed of thought.

My second way of releasing negative emotions is ‘journaling’ in a small book. I keep writing until there are no more tears, or I can’t get any angrier. When I start feeling calm and more peaceful inside, I know I am at my deepest level.

These are a sample of what I do to set myself free. I would love to hear about your favourite ways.