I went for a run along our country road and it was full of surprises. There is an abundance of wildlife in our area but it seemed more acute today. The list of birds is like opening the Audobon bird book. I saw a pair of western tanagers chasing each other, a group of cedar waxwings eating dogwood berries, juncos on the side of the road, yellow warblers in the bushes, and townsend solitaire with her young. There were brewer’s and red-wing blackbirds, male northern oriole feeding 2 of his youngsters (I’ve never seen a male bird feed their young), winter wrens singing their long song. Did you know that winter wrens are the smallest birds with the longest song. Eagles flying overhead teaching their young one how to fly and more bird sounds in the forest that I couldn’t identify.

I passed by a field of llamas munching on grass as their lower jaw slide sideways and then circle around. Snakes hiding in the tall grasses bordering the creek that flows gently along the side of the road. Even the horses were having a lazy day as they basked in the fields with the sun peeking in and out on this crisp summer day. A crisp 13 degrees Celsius–far below our typical 30 degrees.

It was a glorious run–no human-made sounds.

If I had decided to ride my bike instead of run I would have missed all of these sights and sounds. The pace would have been too fast and the wind rushing by my helmet would have blocked out many of these natural sounds.

Bike riding versus running/walking is a metaphor for my life: frenetic versus calm and peaceful.

Three years when I woke up to the reality of my husband’s dementia and stopped fighting it, I began to slow down enough to see the abundance that was all around me–life lessons in patience and surrendering to what is, healthy children, a beautiful home. Before then I was too busy to notice anything because I was ‘riding’ away from the pain of the losses and changes in my life.

Over the past few years it has been a conscious effort to slow down and really smell the roses. It is healthy and necessary for me to face my dark side (sadness and anger) as much as my light side. It’s all part of who I am and it’s part of loving all of me.

This past month has been crazy busy and I reached my upper emotional and mental limit 3 times. When I lose my balance I have physical reminders–a chest cold, eye infection or fatigue. Dr. Bruce Lipton, a biochemist, has proven that over 85% of our physical illnesses have an emotional root cause.  I guess it won’t surprise you that I am recovering from a cold and a cough.

So reading my note from July 21st is a wonderful reminder of how life feels when I take the time to slow down, bend over and really smell the roses. Time to get back to my morning meditations, saying no to projects that completely fill my schedule, and time to bring out the knitting needles and cross stitching to spend more time with my feet up enjoying the company of my husband.

Note: If you have an experience of reaching your upper limits and what you did to regain your balance I would love to hear from you.

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?

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

Last week we spent a few days on a beautiful fishing boat with great friends and gorgeous scenery. Dave was excited to be some place other than at home with his daily routine of exercising and working on his puzzles. But when he doesn’t get his 11 hours of sleep and a 1-2 hour nap (combined with adapting to a different environment) he withdraws into his own world. There was a moment when 7 of us were sitting around the table enjoying a delicious halibut dinner and I noticed our friends laughing & chatting. Then I looked at Dave, sitting at the head of the table wearing sunglasses and a ball cap, mechanically putting his fork to his mouth and oblivious to those around him. I noticed the contrast between Dave (and us as a couple) with our friends. I was reminded of the change in our relationship and for a few hours, I felt really sad inside. Instead of crying, I wrote in my journal and by the next morning, I was feeling better. I began to pay attention to the ‘magic moments’…catching my first deep sea fish, the crystal blue sky as the fog lifted, 3 humpback whales blowing and diving, and for the wonderful friends who accept Dave for who he is now. Not who he was a few years ago.

Every day has magic moments, even though they are hard to find sometimes. You can identify them when you see, hear or feel something that makes you laugh, feel good, tingle inside, or smile. When you take a few extra moments to appreciate those moments, I guarantee they will sustain you through the tough times when you are fed up and want to throw in the towel.

Dave’s halibut

Anyway, I looked outside and saw a bit of smoke but knew we weren’t in immediate risk of evacuation. We chatted some more, I thanked her and then checked out the details on the internet. The wildfire was about 10 km away and they had plenty of firefighters and helicopters working on it, so I didn’t plan any further.

As you know sensational, bad news sells. In fact, we are bombarded by sad, violent or depressing news for 87% of our day. Not just from the paper and TV, but from other well-meaning friends and family. When I started news-fasting about 15 years ago I was concerned about keeping up with the current events and being able to contribute to an intelligent conversation. But bad news travels quickly.

I challenge you to not watch or read news for a week and notice how quickly the news gets back to you. Then it is your choice of finding out more details–or not.

I remember feeling sick as I watched the twin towers coming down on 911, and on boxing day in 2004, listening to people screaming as they hung onto tree branches during the tsunami in Thailand. I didn’t need to see that repeated every hour on the hour to be more informed. Once is enough.

I use this same philosophy for living with my husband’s dementia. I am fully aware of the pain and challenges of being a carer, but I choose to focus on what it great about my life. I like to use this analogy. When I am sitting in a room, I look around at all of the solid objects–chairs, table, lamps etc. Then I look at the space around those solid objects. The desk, table and lamps (which take up little room) are the aggravations and challenges of dementia; the ABUNDANT space represents what is great about my life..physically healthy husband, great family & friends, comfortable home and remembering I’m not the one dealing with a dying brain.

Let me know how you feel when you spend more time noticing the space instead of the solid objects. And whether you feel happier and more optimistic when you reduce your exposure to news that sells.

So how does Gus and his ball relate to my life as a carer of my husband, Dave–diagnosed 3 1/2 years ago with Frontotemporal dementia? For the first 2 years I believed that I was showing weakness if I asked for help, or cried over slowly losing the husband I married 32 years ago. I kept myself so busy that I wouldn’t have to feel the deep pain. But last year I hit the wall. I was standing in the kitchen making dinner and resenting that I had to cook every night while Dave sat in the den–watching TV and working on his jigsaw puzzle. I felt like a bird trapped in a cage with the door tightly shut. I was juggling work, volunteering, taking care of Dave, the animals and our house. On top of this, we were starting over financially because our retirement savings had collapsed in high risk ventures. I felt very lonely because I couldn’t share my worries with anyone, including Dave.

There was a moment when I was chopping vegetables and I wanted to throw the knife down and walk away. I wanted someone else to do my job because I was tired of it. I didn’t want it any more. I stood there with my head down and taking a few breaths. In an instant I had clarity or an ‘awakening’.  I knew I wanted to stay with Dave and therefore I had a choice… I could continue hanging on to my ‘poor me, life isn’t fair’ belief (story) or I could release it. If I wanted to change my life, I needed to let go of my grimy attitude–which wasn’t serving me any more–and do something different. I didn’t know ‘what’ or ‘how’ but I had faith and belief that life was going to get better. Martin Luther King said “faith is taking the first step even when you don’t see the whole staircase”. I took my first step by writing in a journal 5 things I am grateful for. I started getting up earlier and spending quiet time with our kitty cat, reading and meditating to clear some of my brain chatter. Every day I ran, walked or biked for my daily dose of endorphins…the ‘feel-good’ chemicals released in the brain.  Slowly but surely, the door to my cage starting opening up.  I was accepting help from neighbours without feeling like I have to give something in return. I went out for lunch with girlfriends and gave myself permission to cry without feeling weak because sometimes the load feels too heavy. I am happy and love my life, regardless of my circumstances. It took me 2 years but I finally figured out that I can’t control anything on the outside–including Dave’s dementia and the behaviours that go along with it.  The only thing I can control are my thoughts and therefore my beliefs.

Last year I hit a major turning point in my life of living with a husband with dementia. My plate was full with running 3 part-time businesses, volunteering, cooking, cleaning, shopping and…taking care of Dave and me (sometimes our 2 grown children) I had to find a way to balance everything. I took a course from Darius Barazandeh this past winter and he said that if you want to live in a ‘state of grace’ or in a calm, peaceful state, then you need to have order in your lives. What a difference it has made in my life. The more systems I create and develop, the easier life is becoming. For example, I have many service people in my life–car mechanic, furnace guy, appliance fixer-upper, plumber, electrician, septic pumper-outer, cleaning lady, painters, garage door fixers, dentists,doctors, accountant and the list goes on for pages. To keep track of them I have a plastic accordion file case with 13 slots. Each one is labeled with plumber, electrician, mechanic and so on. On a 3 x 5 index card I put the name of the company, phone number and the name of the person I am dealing with, along with the details of what they did and the receipts. Another system I have is for making a shopping list. There is a sticky note beside the fridge with a pencil attached (pens don’t write well on vertical surfaces) and when I remember what I need on the grocery list I put it down. Then I take the note with me when it is shopping day. This saves time writing out a list and also saves time by going once a week because I don’t forget anything. Another idea is using a flip video (a small video camera that easily transfers to a computer) for recording details. The other day when Tony, a tile specialist, was fixing our retaining walls, I used the video to record the steps for preparing the surface, putting the tiles on and finally the grouting. He ran out of time and didn’t finish the grouting so I am going to do it. There are more loose tiles and it looks like it going to be a recurring issue. Anyway, I have already bought the tools and cement and will be testing my ’tiling’ skills early next week. I am looking forward to the challenge and besides, it is great for the brain to learn a new activity and …I save some money. I know there are times when my time is more valuable but I want to try it out. I will let you know how it turns out.

If there is a part of your life that seems overwhelming or confusing, work out a plan or system for it. You will notice how much easier it is when you have to contact the plumber if your hot water tank bursts or the electrician when a panel of fuses burn out. I hope this post will start the wheels in motion for you to find creative ways to live an easier life regardless of the curve balls that living with dementia throws your way.