There are times when being a care giver for someone with dementia–or any serious illness—is exhausting and unpredictable. When my husband, Dave, was initially diagnosed with Frontotemporal dementia, I searched everywhere for the magical book–10 Easy Ways to Live with Dementia. It not only didn’t exist, but there was little information on ‘how to’ deal with the many challenges that come up.
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? It is a ‘work-in-progress’ for me.
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.

In my earlier posts, I told you about my husband, Dave, 59, who has 
This isn’t easy writing about how my 2 kids are dealing with their Dad’s dementia because I am not sure. The bond between them is extremely close and they share their deepest thoughts and tears with each other–not me. I can only tell you my impressions and a couple of comments they made.