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!

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/

There is a creek along side our road and as I was passing a culvert (a steel tunnel which allows the creek to flow under the road) I noticed that the water was backing up. A few weeks ago, a beaver or human made a dam with twigs and branches creating a reservoir on one side of it. The water was stagnant and algae were blooming. On the other side of the culvert, the stream was a trickle.

This scene reminded me of my first year after the doctor gave us the news about my husband, Dave. He was 57 and was diagnosed with dementia. Like the beaver, I kept busy piling up the twigs and building a dam on my emotions. I didn’t realize I was running away from the pain. I didn’t give myself permission to cry or grieve my losses because I thought it would show weakness. Many of my friends commented on how strong I was and I wanted to keep up the façade.

But eventually (and fortunately) the dam broke. Just like today when I was lying on my stomach on the culvert–pulling one twig at a time out of the pile, I slowly restored the flow to my life. They were small steps like writing my feelings in a journal instead of holding them inside; exercising daily to give my mind a break from the worries of our future; setting up daily planners so I didn’t feel overwhelmed.

This journey with dementia requires more than stamina. It requires patience and commitment to taking action every day. Even if the twig is tiny, I guarantee you will begin to hear and feel the beautiful rush or flow in your life. No longer will you feel unwell or like a dam about to burst.

ps. My first Ezine…”Dementia Tips for Caregivers” was published on October 8th. You can access it, plus learn new tips every 2nd Friday by clicking here…www.dementiahopeformula.com

It took 2 years to realize that dementia is out of my control. The only thing I can control is how I am living with it. I have a choice. I can continue being sad and angry that life is turning out differently than I expected, or I can learn to accept and love life as it is.

Last week I went to a business course by Fabienne Fredrickson and she spoke about the Panic Point— better known as the ‘breakdown before the breakthrough’. These are periods in life when it feels like everything is going wrong–like you can’t handle one more thing. It may begin with a bad cold, eye infections, frequent arguing, blaming others irrationally for what is happening, or maybe technology breaking down around you.

This week happens to be one of my Panic Point phases. The tipping point came when our washing machine decided to quit in the middle of the rinse cycle. The buzzer on the machine is ringing, telling me that the intake valve is blocked. What is this all about? I pull out the manual which shows me how to flush the valves, scoop out the debris blocking the propeller, and clean out the filters. All I want to do is to sit on the floor and cry. I am begging for someone to PLEASE take over my job as caretaker of this house.

After my initial hissy fit, I realize I have a choice (once again). Either work through this problem rationally, or run away in anger and frustration. I choose persistence. I follow what the manual tells me to do and I am feeling pretty good about my troubleshooting abilities. But it is short-lived. After putting everything back together, not only doesn’t the machine work, but I can’t open the door to retrieve the wet clothes inside. Oh boy! I have had enough. I cry some more, feeling very sorry for myself and really fed up with these tests from the universe.

Then in a split second, I think of Dave. He is upstairs eating his toast, watching the weather reports and working on his jigsaw puzzle. What a simple life he seems to be leading. Would I change my situation and my brain for his? No. Does he complain about his headaches and his progressive physical/mental challenges? No. This instantly turns my attitude around. I know that if Dave could help me, he would. He used to be a handy man of the house and never complained when he had to fix a stove, a furnace or many of the other electrical/plumbing issues. I am discovering how much he actually did around the house-much more than I gave him credit for.

By the time I come upstairs, my pity party is over but I am still feeling heaviness inside. So I do what I have done for years to relieve my stress…I walk outside, surrounded by nature, and just keep moving. I walk until I feel lighter; until the tight band around my neck and shoulders loosens. After a while I begin noticing the bright green color of the spring leaves on the dogwood bushes lining the creek. I see and hear the small warblers singing and playing tag in the dense underbrush. It is amazing how quickly I feel grateful to be alive, and grateful for the reminders that these panic points are temporary.

Life isn’t easy, and neither is living with dementia. Every time I succeed in pushing through these panic barriers, there is more appreciation for the peacefulness and power I feel afterwards. It also reminds me how each experience builds on the previous ones which is preparing me to handle whatever the future holds for Dave and me.

© 2010 Holly Eburne

There is no denying that his sweet tooth has come alive with his dementia, but he shows remarkable discipline. After lunch and dinner he loves to eat 2 Dad’s chocolate chip cookies. Not 3 cookies–even if there are 3 left in the bag. I am sure I would not leave a lonely cookie in the bag when I can’t even leave frozen carrot cake alone. Anyway, 2 days ago we ran out of cookies and I wondered how he would manage until I went shopping. I think I have my answer…

Earlier this evening Dave came up the stairs with a mouth full of food. This  isn’t a big deal except our kitchen is on the main floor and I was curious about a stash of food he might have downstairs. Before I could stop myself, I asked him what he was eating. Through a mouthful of food, he said “nothing”.  Now 2 years ago I probably would have ‘called’ him on it and said something like “how can you honestly tell me you aren’t eating something when I see that your mouth is full”. Most likely I wouldn’t have let it go until he admitted I was right, or I became so frustrated that I would say something I would regret later. But now I ask myself…why does it matter that I need to be right? Will that add to the quality of our life?

 I believe that Dave answered as honestly as he is capable of. End of story. Once again I learned how much easier it is to ‘flow’ with life rather than resist it. This is one of the biggest gifts of living with dementia. Learning to let go of the smaller stuff and focus on what is really important—living in the present moment with a husband who does his very best with the abilities he has.

© 2010 Holly Eburne

It has been 3 years since our lives have changed dramatically. It took 2 years for me to hit the ‘wall’—a place where I felt overwhelm and wasn’t sure how I was going to survive the rest of this journey. I had a choice to stay stuck in the sad, overwhelm state or move through the pain and up the ladder to more peace and loving what is. It didn’t happen overnight. I spent months with a life counselor, reading, listening and taking personal development courses, meditating, and soul searching for answers. As I continue on this path I am feeling how much easier it is to ‘flow’ with my new reality than ‘resist’ it. Every day I am shown how to do it by Dave who is ‘flowing’ with what is.

It seems that I am surrounded by messages on how to live a happier, peaceful life. Last week I was at CEOspace—one of the finest business schools in the world. It stresses the ‘cooperative’, rather than the ‘competitive’ model. Their core message is…”when you help someone get what they want, you will get what you want”. (that doesn’t necessarily mean from the person you helped) It reminded me of a story I wrote in a blog several months ago…

The story is about a gentleman who arrives at the ‘pearly’ gates of heaven. He meets God at the door and says…”before I come into heaven, I would like to see what hell looks like, so I can better appreciate heaven. God says…no problem. Let’s go. When the door to hell opens there is a table covered with wonderful, healthy food. Around the table sit skinny, hungry and cranky people bickering with each other—holding 7 foot chopsticks in their hands.

They close the door and head back up to heaven. When they open the door there is a similar table full of wonderful food. People are joking, laughing and having a great time and in their hands they are also holding 7 foot chopsticks.

The gentleman asks God, what’s the difference? Why are these people so happy and healthy? God answers…because they feed each other.”

I love this story because it is a perfect illustration of how well the ‘cooperative’ model works. There is a balance of giving and receiving. As care givers we tend to ‘give’ more than ‘receive’. This is the nature of our new job. But it doesn’t have to be. How good do you feel when you give someone a special gift or help someone out? Can you feel their appreciation and love for you? On the flip side…how do you feel when someone offers to help you? Maybe a family member offers to take your loved one for a drive or to stay with him so you can have a break to be by yourself, or go out with friends and laugh. Do you accept their offers or do you hesitate? If your furnace breaks down or your car won’t start, would you ask your neighbor to help you? And if you do, are you comfortable receiving help without feeling like you should do something in return? I still need lots of practise.

Asking for help and ‘receiving’ (as much as giving) is a new concept for me. I have always prided myself on being strong; I equated strength with independence—not needing anyone. No matter what, I would figure it out even if I dropped into bed exhausted at night. But last year I reached a ‘tipping’ point and I knew that I had to change my way of thinking. If I was going to stay healthy and be the best care giver for Dave, I had to throw away my ‘default’ attitude. With practice, it is getting easier to ask for help without feeling that I should ‘give’ something in return. I am amazed at how much easier life flows. The feeling of being 100% responsible for Dave’s care is no longer weighing me down. People feel good when they contribute to a cause bigger than themselves. And I am feeling good knowing that I am not alone. I would say this is a win-win.

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.

Washington, DC Metro Station on a cold January morning. A man with a violin plays six Bach pieces for about 45 minutes. During that time approx. 2 thousand people passed through the station, most of them on their way to work. After 3 minutes a middle-aged man noticed there was a musician playing. He slowed his pace and stopped for a few seconds and then hurried to meet his schedule. 

4 minutes later, the violinist received his first dollar–a woman threw the money in the hat, and without stopping, continued to walk.

6 minutes: 
A young man leaned against the wall to listen to him, then looked at his watch and started to walk again. 

10 minutes:
A 3-year old boy stopped but his mother tugged him along hurriedly. The kid stopped to look at the violinist again, but the mother pushed hard and the child continued to walk, turning his head all the time. This action was repeated by several other children. Every parent, without exception, forced their children to move on quickly.

45 minutes:
The musician played continuously.  Only 6 people stopped and listened for a short while. About 20 gave money but continued to walk at their normal pace. The man collected a total of $32.

1 hour:
He finished playing and silence took over. No one noticed. No one applauded, nor was there any recognition.

No one knew this, but the violinist was Joshua Bell, one of the greatest musicians in the world. He played one of the most intricate pieces ever written, with a violin valued at $3.5 million dollars. Two days before, Joshua Bell sold out a theater in Boston where the price of seats averaged $100. The questions raised: in a commonplace environment at an inappropriate hour, do we perceive beauty? Do we stop to appreciate it? Do we recognize talent in an unexpected context?

This is a true story. Joshua Bell playing incognito in the metro station was organized by the Washington Post as part of a social experiment. 

One possible conclusion reached from this experiment could be this: If we do not have a moment to stop and listen to one of the best musicians in the world, playing some of the finest music ever written, with one of the most beautiful instruments, then what else are we missing in our life?

Sure I have strength. I can carry on thinking positive thoughts and squishing my pain and grief inside so I won’t have to deal with it. But it has a way of catching up and it happened this past year.

Many times I have said that my husband’s diagnosis of frontotemporal dementia, has been a ‘tipping’ point in my life. Toughing through my days, pretending that all is well, stopped working for me this past winter. It took 2 years of living with the reality of Dave’s dementia before my body and mind began breaking down. My final breaking point came shortly after a major event with the Alzheimer’s Society (same month I received a phone call from a woman whose husband died years ago from FTD). Our family was selected to be the 2009 honouree family for the Alzheimer’s Walk for Memories. I was thrilled because I wanted to share the insights and lessons our family is learning from this challenging journey. 

For 3 months leading up to the Walk, there were dozens of media events-radio interviews, television bits, newspaper articles and pictures, rotary and sponsorship meetings etc. I managed to hold it together for 98% of the time and for the remaining 2%, I was pretty quick to recover. But I didn’t realize that every time I was telling my story, I had to screw the lid on my emotions tighter and tighter. They were starting to leak through…I didn’t like feeling the pain.

By early February when the event was over, I woke up with a fever and a flu which lasted 7 weeks. For the first time in 21 years–since my Mom died– I missed work. For the first time I was actually sick enough to lie in bed for 5 days. I am lucky my illness wasn’t more serious. I am also lucky because I understood the lesson. If I don’t learn to surrender to Dave’s condition–to accept and give myself permission to cry over slowly losing the sweetest man I have ever known—then I was going to end up being one of the 80% of caregivers of dementia ,who don’t do very well. If I wanted to do my best for Dave, my kids and me, I needed to change what I was doing.

I started to understand that if I wanted joy to return to my life, I needed to make room for it. The only way to do this is by releasing all of the junk and stuff I have collected over the years. Fortunately, energy moves quickly and in my next post, I will share 2 of my favourite releasing techniques.