Before the show airs, I like to do some prep work but I was having difficulty with this one. Why? Because by default, I run away from the feeling of sadness. I grew up in a family where we were reprimanded for crying. I didn’t want people to think that I was weak and couldn’t  handle what life was giving me. I was also afraid that if I focused too much on the pain and grief of caregiving, I would get ‘stuck’ in that stage. I didn’t want to be depressed, and I definitely didn’t have time for it.

But 2 years ago when I hit the lowest point in my life, I couldn’t run away from the sadness any longer. I knew that I had to do something different because I couldn’t shake the feelings of being trapped and sad. I started with baby steps like exercising every day, writing in my gratitude journal and most importantly, giving myself permission to sit still long enough to really feel the pain. My tears washed away some of the layers of my childhood beliefs, and gradually the dark cloud overhead dissipated. The light was beginning to shine through.

Looking back on that time, I realize it was normal and critical for me to go through this stage. If I wanted to reach the 5th stage of acceptance of Elizabeth Kubler-Ross’ 5 stages of death & dying, then I needed to get in touch with the pain that I was running away from. I recognize that any change–small or large– is a loss or a death. For me it is the loss of a life I expected to be living in my 50s, and the slow loss of a husband I had known for over 30 years. Honestly? I don’t always like it but I accept it.  And… I’m happier , healthier, and more peaceful because I had the courage to face what I didn’t want to face–sadness and depression.

Note: I just realized that it is Valentine’s Day (you can tell that isn’t in my forebrain) and what a day to write about sadness. Oh well, I’m going to publish it anyway because it is part of life. Happy Valentine’s Day !

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I told her that I have questioned myself when friends ask how I’m doing. Can ‘joy, laughter, fun’ really go alongside living with dementia with all of the challenges and disappointments that go along with it? Honestly…yes.

I’m not denying there are bad moments–moments when I’m really tired of living with the constant challenges. I miss the intimacy in our marriage, the kisses that last longer than a peck, the hugs that really mean something–not a pat on the back of my shoulder like a young child. I feel sad when I see other couples holding hands or laughing and having intelligent conversations. Until 4 years ago, the running of our household was a joint effort. Where did my handy guy go? The one who fixes leaking toilets, water softeners, washing machines that break down in mid-cycle, loose taps, electrical panels that need replacing. Where is my help in the garden, or who runs errands while I focus on earning an income? Where is my life partner who can share the emotional load when our daughter has to have heart procedure for a longstanding cardiac rhythm problem? What about the pain when our son helps his Dad through a seizure and the grief in our children eyes as they watch their Dad slowly withdraw into his own world?

I feel all of these emotions and more. Finally, I’m okay with them because I know that it is normal and those periods will pass. Fortunately, I get to choose whether I stay there or not.

I love my life. Not the caregiving part, but the person I am becoming as a result. Caregiving isn’t my choice for the peak years of my life but this is my reality. I struggled and fought it for months. I tried controlling the progression of dementia, and what our life was supposed to look like in our 50s. When I finally ‘let go’ and accepted what is, I no longer felt trapped or angry that life isn’t fair. I have learned and grown too much to want to go backwards or to wish that my husband didn’t have dementia. My eyes are wide open to how generous people are and how wonderful it feels to ‘receive’ not just give. I have a new appreciation for being able to sit silently in meditation without the constant mind chatter; what it feels like to balance the ‘being’ with ‘doing’ instead of running around in circles and stressing about every little detail. I am more aware of living in the present moment with fewer worries. I am learning about unconditional love and I am really seeing my husband and children for who they are, instead of who I think they should be. I am letting them experience their own journey without the need to guide or ‘save’ them from mistakes. I am learning to love myself and to silence my harsh ‘inner critics’. I am doing the best I can.

I’m finally understanding that I don’t have control of external conditions. It isn’t the house, the vacation or the money that is going to make me happy. How I feel is an ‘inside’, not an outside job. Living with dementia is also teaching me about adaptability, creativity, patience, compassion & honesty that are helping me to live in a world, aside from caregiving, with less stress and more ease.

As I said to the reporter…some people might think this is being pollyannish, but it’s how I feel. I have worked hard (decades of studying personal development—books, CDs, courses & practice) to reach this place. Living with dementia and caregiving has pulled me to the lowest point in my life and I chose to step forward—one baby step at a time.

Her next question: “Okay, how do other people find the balance you have found?” I told her about my Dementia Hope Formula: a 3-step inner journey for finding hope, balance & joy.

For anyone who wants to learn more about the steps I took (and continue to take) to enjoy life, regardless of the circumstances, I would love for you to join me and sign up for my free newsletter: Dementia Hope Tips for Caregivers. This newsletter isn’t just for caregivers. It is for anyone who has challenges and wants to live their best life. It just happens that living with dementia has pushed me to learn them at a faster rate.

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.

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.