Waking up to my Reality Makes it Easier to Live with Dementia

The loneliest years of my life were the first 18 months after my husband, Dave was diagnosed with Frontotemporal dementia. We were both in our 50s and dementia isn’t supposed to happen to couples our age. I didn’t know how to deal with it, where to go, or what to do. Many of my friends reassured me that I was strong enough to handle it. When I found myself crying in my office or out on a walk, I beat myself up because I’m supposed to be strong. You see-I grew up being told that crying is for... 

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Flowing with Dementia

I just came back from a run and had an interesting detour along the way. 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... 

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Dementia Caregiver’s Choice

I like routines-predictable and comfortable. Since my husband, Dave, was diagnosed with Frontotemporal dementia 3 ½ years ago, my life has been anything but routine. The brain is our most complex organ, making it difficult for scientists to predict the exact progression of brain diseases, like Alzheimer’s & related dementias. 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... 

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Living with Dementia is Teaching me to Let Go of the Smaller Stuff

Hoarding and overeating are some of the features of Frontotemporal dementia. My husband, Dave, was diagnosed 3 years ago and so far they haven’t been too much of a problem. 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... 

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Care ‘Giver’ Learning to ‘Receive’

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... 

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Faith: a 2 legged dog has a different perspective on life

It is Christmas time and there are lots of great stories I could write about, but the one I received this morning from my daughter had the biggest message of all… 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... 

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Learning to Live in Harmony with Frontotemporal Dementia

Byron Katie’s book, ‘A Thousand Names for Joy’ (Living in Harmony with the way things are) is a great book for where I am in life.  The chapters are short and each one has a story or message about being in total ease in the present moment (painful or not). Since my husband, Dave was diagnosed with Frontotemporal dementia 3 years ago, this book is another reminder of one of the biggest lessons I am learning…accepting what is. In one of her stories, Katie describes a conversation with Peter,... 

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A story about enjoying the moment & our perception of it

Last week a business partner of mine sent me this true story. I want to share it with you because it relates to one of the biggest lessons I am learning about living with my husband’s dementia–being present in the moment… Washington, DC Metro Station on a cold January morning. A man with a violin plays six Bach pieces for about 45 minutes. During that time approx. 2 thousand people passed through the station, most of them on their way to work. After 3 minutes a middle-aged man... 

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What happens when you hold back your tears?

I have been told my whole life that I am strong. Even if it means holding back the tears while watching my Mom slowly pass away from cancer at age 60, or watching my young children, 3 and 5 years old, cry because they are losing the best Nana they have ever known. The type of Nana who plays on the floor and builds lego with them, or kicks a soccer ball around in the backyard. Or how about when I had to keep my emotions and fears in check, so that I didn’t lose it in Emergency when my 11 month... 

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Surrendering to Dementia

Usually when I sit down to write a post or an article, my head gets in the way. I begin editing and thinking too hard and the words don’t flow easily. I am slowly understanding why it happens–the first step to curing it. It is about  ‘surrendering’ or letting go of the process of writing. I need to stop worrying about what readers will think, and just write. In fact, surrendering is a word which has taken on a whole different meaning since my husband, Dave, was diagnosed... 

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