This past week I had one of life’s many lessons in dealing with my husband Dave. He has Frontotemporal dementia and as it progresses, he is less motivated to do any activities outside of his jigsaw puzzles or exercise. I’m glad that he is still capable of doing these activities but the reality is that I need help to maintain a house, garden, pets, and car while I work full-time.

As Dave’s physical and mental abilities change, so does his honey-do list. There are a few jobs that I am holding firm and don’t want to put on my list. One of them is plowing our steep driveway with the ATV & snowblade.

Last Sunday we had our first snowfall and I asked Dave to clear the snow. He said he couldn’t do because it was still snowing. I could count the snowflakes and there was less than 1 mm of additional snow. He would do it in the morning so I let it go. Monday came and went. So did Tuesday, Wednesday and Thursday…filled with excuses. By Friday I was losing my patience. I begged him to do it before I left for a 24-hour visit with my sister. I didn’t want him operating machinery while I was away. Once again he decided NOT to do it and went for a nap instead. I could feel the anger building and as silly as it sounds, I wondered if I could physically force him onto the ATV. After he shut the bedroom door, I realized that I was more upset because I couldn’t control this situation than I was about the snow and ice on our driveway. It’s funny how life lessons keep slamming me in my face. After relaxing my shoulders, taking several breaths, and gaining a different perspective, I remembered the Serenity prayer: “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”.  Boy…it only took me 5 days to remember this one!

What did I learn this week?

#1 I can’t control circumstances and people outside of me; only my response to it. It seems that I need to be reminded of this often. How easily I forget.

#2 Recognize when I am struggling against something/situation (feel the tension in my head and neck) and ask myself…”how can it get any better?” In this case, I will hire a teenager in the neighborhood to help me out.

#3 Step back and observe my reaction; breathe, and ask myself “what is the worst case scenario, if our driveway doesn’t get plowed?” Puts my drama in perspective.

#4 Dave isn’t acting this way to push my buttons. I’m allowing them to be pushed. As Steve Chandler says “focus on strengthening the inside of focusing so much on what is missing from the outside”.

#5 Life is full of challenges and every experience (good or bad) teaches me something. Not obvious at first but after the tension (and drama) settles down, it becomes clearer.

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.

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.

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

Three years ago when Dave was diagnosed with Frontotemporal dementia (FTD), the specialist told me that it was up to me to decide when he wasn’t safe enough to drive our grandchildren (if we had them). I kept pushing that responsibility away because it felt too heavy. I was already adjusting to the increasing load of being a carer for my husband, without taking on this decision as well. But last fall I reached a point of clarity and realized that I had to get my head out of the sand. Dave was a danger on the road. He spent more time searching for wildlife in the fields and pointing out full moons (on blind corners) than the cars on the road.

For most people, driving is their ticket to freedom. I fully ‘get’ that. Dave loves to drive, and honestly, it was my ticket to freedom as well. It gave me time to be alone, while it gave Dave a sense of purpose and contribution as he did errands for me every day. Having a reason for getting up in the morning is what keeps us happy and healthy. This is one of the reasons why retired people who volunteer stay healthy—physically, mentally & emotionally.

When Dave lost his license, it has been more difficult than I imagined. Despite the inconveniences (9 km. from the nearest bus stop and added chores to my list), I understand why he shouldn’t be driving, but Dave can’t. One of the features of FTD is poor insight and reasoning abilities–frontal lobe. Although Dave has an amazing attitude towards accepting his condition, he is stuck in this area of driving. He feels cheated that he wasn’t given a proper test and that he walked into the doctor’s office with a license and walked out without it. There are 2 places in our province where he can appeal the doctor’s decision, but I am not willing to drive him or spend the money because I know he is not safe to be on the road. I would like to see a test which is easy to administer locally, affordable, and accurately tests their abilities. A test where the person with dementia has a sense (if that is possible) why he shouldn’t be on the road.

So my question is…how can we handle this issue with more ease? There is money going into researching the causes and treatments for dementia but what about the day to day reality of living with it? Where are the systems to help us deal with a problem which seems to be at, or near the top, of stresses for both the person with dementia and their family?  I would love to have a driver twice a week to take Dave where he wants to go, and to run some of my errands. He wouldn’t feel ‘trapped’ and I wouldn’t feel like I am bailing water out of a boat which keeps filling up. If you have suggestions or creative solutions I would love to hear from you:  hollyeburne@gmail.com.

© 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

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’.

I am amazed at how quickly a stray, ginger cat with white boots–purring on my lap– can lift my mood. It hasn’t been an easy 2 weeks since my husband, Dave, received a medical driver’s form to be filled in within 45 days–or he loses his license. There is a .001% chance he will be allowed to continue driving. 3 years ago Dave was diagnosed with Frontotemporal dementia and the specialist warned us this day would come.

Dave has a remarkable attitude toward his dementia. He hasn’t been angry or upset…until now. He has some insight into his condition– he knows his personality is changing quickly and thanks me for ‘putting up with him’. But, he doesn’t understand why he should lose his license. “I will sue the doctor who takes away my license”. I turn blue trying to explain why he is a risk on the road, but it doesn’t penetrate his illogical brain. He LOVES driving and there is no getting around it. Dave wants to take the test and show them he is a good driver. Before he takes the road test, he has to pass a 50 question written exam. “Do you think you can pass it?” He quietly says…”probably not…but I still don’t see why it makes a difference just because I have Alzheimer’s?” He forgets he has FTD, not Alzheimer’s.

Winter is coming. The shorter days and lack of sunshine makes it more difficult to feel happy. I understand that I shouldn’t let external circumstances dictate my moods; sometimes I can’t help it. Life isn’t always fun. Living with dementia is much harder than I thought; much longer than I imagined. My mom and sister had cancer, and their disease followed the time lines set out by the doctors. The acute pain and grief of losing them, plus the roller coaster of emotions, lasted less than a year. But dementia isn’t following any neat guidelines. I find myself shaking my head when I listen to Dave struggling to find words, or when I look at him sitting on the couch with a vacant stare. I can’t believe this is the strong, funny guy I married 31 years ago.

As I sit here writing my story, it is 4:30 am—the best part of the day. I have a cup of coffee, my computer and best of all…I have Marty, purring on my lap. When I pet his soft fur or look at his adorable white boots crossing over each other, I momentarily forget about the worries of running the household or taking care of Dave. At 6 o’clock, I let our springer spaniels, Riley and Emma, out of their bedroom; I laugh as they wrestle each other to the door. There is over 30 stellar jays and Clarke nutcrackers waiting in the trees for their morning peanuts, and dozens of goldfish in our pond weaving through the reeds.

Being outside–surrounded by nature and animals–is my salvation. It interrupts the chatter in my brain and gives me mini breaks of fun and laughter. It cuts through the winter sadness–lifting my spirits enough to show me how great my life is. I am forever grateful to these creatures. They live a simple life; in the moment… reminding me that life doesn’t have to be as complicated as I make it out to be. I never imagined that a ginger cat with white boots could start my day off with such magic.

My Sister Kissing Marty’s Boots

Last month I read a blog by a young man, Alta, in Pakistan–’ Boys Don’t Cry’. It was an emotional story about his Mom with Alzheimer’s and how his Dad sits beside her bed every day. He said he feels like he is losing both parents. I thought of my own children, Kyle and Amy. They are one of my biggest reasons why I am committed to finding ways to do more than just ‘survive’ day to day. I want the best quality of life despite these challenging times.

The latest report on a study of Alzheimer’s and dementia said that 40-75% of caregivers suffer a psychological illness related to their situation. But there was no mention of the children. What are their statistics? Dementia is no longer an ‘old persons’ disease. We are seeing an increase in young families being affected. How are these children, as young as 8 years old, dealing with the changes in their world? What support system is available for them? Are they like the tree that falls in the forest–the tree which doesn’t make a sound if no one is around?

The Alzheimer’s Society emailed a survey last week asking for input on where their money should be spent.  Although I dream of the day they find a cure for Alzheimer’s and dementia, I feel it is just as important to support the healthy people in our society. How can we support the families (including the children) living with dementia, so there is less strain on our health care system? So they don’t become sick—physically, emotionally or mentally. I would like to see more education and emphasis on a healthy lifestyle, minimizing the risks of developing this condition. Lastly, I would like see the day when the stigma of having dementia disappears. When people with dementia and their families can walk with their heads held high in public– instead of hiding at home with grief and shame.

I was watching a DVD this morning and Hale Dwoskin, who teaches the Sedona Method on releasing unwanted emotions, said something which really resonated with me. He believes that children are here on earth not to learn, but to teach. If you stop for a minute and think about how children live their lives…they can throw a temper tantrum in the middle of the grocery store and belly laugh the next. They can be upset and throw toys at their playmates, but within minutes are back playing without hurt feelings or grudges.

There are many similarities between children and people affected by Alzheimer’s and dementia. Their lives are simple. My husband, Dave, who has Frontotemporal dementia, is 59, yet has many of those wonderful qualities of a child…his beautiful, genuine smile first thing in the morning; his ability to ‘let go’ of what happened yesterday or even moments ago; his ability to sit and be still–watching the clouds and the jet streams  in the sky. He honestly does not worry about his future. Dave has enough insight to know he will continue losing more physical and mental abilities, but he does not let those thoughts take away the beauty of what he has right now. 

I had no idea when I married this good looking, athletic man 31 years ago, he would become my greatest teacher–more than all of my personal growth books, courses and DVDs combined. I am surrounded with his energy 24 hours a day. His energy, a peaceful acceptance of what life is giving him, is contagious. He doesn’t clutter his brain with worries or shame over what people will say when he doesn’t recognize them, or when he can’t find the words to carry on a conversation. In Dave’s words…”it is what it is. Why would I be angry?”  What a gift to live with my greatest teacher and what gifts dementia is bringing into my life.

Everyone has their own way of dealing with the challenges in their life and this is how we are choosing to deal with ours. It has been a gradual process of releasing the pain and grief of my new reality; even letting go of the expectation of what I thought our life would be like in our 50’s. I finally understand that I can’t control what this disease is doing to my gentle husband, but I can control how I am living with it.