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.

According to several studies, 91-97% of what we worry about never comes to fruition. You can bet I have tested this theory many times and it has held true for me. I am learning to spend less energy worrying about something that ‘might’, but usually doesn’t, happen. For example, if Dave was late coming home from shopping, I would worry that he had a seizure while driving–that was before his license was taken away due to the complications of his frontotemporal dementia. When he arrived home safely, I would remind myself of the wasted energy, not to mention the negative impact on my health.

There are times when I get scared looking down the road at the dark clouds of our future (with dementia), but I have to remind myself that we aren’t there yet. Right now Dave is still physically able to do many things and I am going to keep treasuring the moments…just like our run this morning.

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

For the past few days I have been busy getting ready (making lists, shopping, chores) for a big fishing trip up north with some friends. (I have never caught a fish and I am quite excited) Anyway, I noticed that my mind was starting to feel like it was in overdrive so I hopped on my mountain bike for a cruise along our country road. Within minutes I started noticing the crystal blue skies (all of the wildfire smoke has disappeared) against the green hills, the smell of fresh air, and the sounds of the birds flitting among the bushes lining the creek. The wind against my face and the feeling of gliding along on my bike was freedom. I was reminded of all of the things in my life that I am grateful for–living on a quiet country road among nature, our sweet animals, my health and Dave’s health–who has done very well since his diagnosis 3 1/2 years ago. It is amazing how great I feel when I quiet the chatter in my brain and surround myself with nature.

Stepping out of the commotion of ‘living with dementia’ is key to seeing the bigger picture of my life. Last year I was standing within a foot of a hummingbird feeder and there were 5 territorial male hummingbirds (3 calliopes & 2 rufous) fighting for a spot on the feeder. It was fascinating to be inside of their ‘organized chaos’ because they managed to buzz around me–without touching me or each other. What an incredible sight. It wasn’t until I stepped back out of their energy that I noticed how calm it was to be on the outside. My bike ride this morning was like stepping out of my chaotic mind chatter. I came back relaxed and rejuvenated. So…any time you feel yourself winding up, lace up your shoes and go for a walk, run, pick weeds or any activity that will get your body moving and in touch with nature. It is a win-win for everybody!

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.

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

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

Since my husband, Dave, was diagnosed with Frontotemporal dementia 3 years ago, I have gradually taken over his chores; chores that came easily to his ‘male’ brain. I had no idea how much he did until I had to pick up his end. Well, I finally have to admit that I am reaching my tipping point. I am putting up my white flag and calling for help. I realize that if I want to keep a balance in my life—working, having personal & family time, and managing our house–I need some assistance. No longer do I think I can do this by myself. My ‘dream’ plan is to hire a retired couple–4 hours/ day for 2 days a week. The husband can take care of the mechanical issues around the house, be a driver for Dave (he lost his driver’s license in December and the nearest bus stop is 9 km.), run errands and keep Dave company. His wife can help me with the house chores, including cleaning and cooking.

Besides feeling tired this morning, I was feeling sad. That isn’t a usual emotion for me and in the past, I would busy myself with work or something else to take my mind off the pain. This time I decided to sit with the pain and let the tears flow. I didn’t make a phone call to complain or to get sympathy from a friend or family member. I decided to work through it myself. As I was having a small ‘pity’ party, I looked out the windows at the chickadees, goldfinches and pine siskins eating at the feeders. I watched as the birds flew in and out, sometimes stopping at the bird bath for a drink. I started feeling better. This is what happens when I am out with nature. I notice that when I feeling a bit down, it only take seconds of being outside before I feel the weight off my shoulders, and the lightness and happiness coming back.

Throughout this past year, I am learning that the key to my happiness is within. It isn’t dependent on other people or circumstances. I am also learning that it is okay to feel sadness and grief, as long as I don’t get stuck in that stage. It seems the more I practice ‘leaning’ into my emotions and letting them ‘be’, the easier life flows for me. I have a different perspective on my life and I am realizing that abundance doesn’t come from a large bank account.

I wanted to share my latest insight with you while it was fresh inside. I just came back from a run and I am feeling 100% better. There are 3 horses down the road, which gallop towards me when they see me. I’d like to think it is for more than the carrots I bring! Anyway, they let me kiss them while I feed them and I love listening to the crunching sounds of the carrots. On my way home I heard the spring sounds—warblers in the creek, robins, belted kingfishers waiting for the ice to melt from the streams and the trill of the red-wing blackbirds. How can I feel sad listening to the cheeriest sounds in the world?

Have a wonderful day!

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.”