This is my original edited for space that was posted on Alz.org. I’m very thankful to the Alzheimer’s Association for their posting and the broad awareness and support. I was asked by several of my friends living with dementia to post the unedited version on my blog. I’m also placing here for posterity for my family.
How do you define happiness? How do you define Joy? Some may suggest they are synonymous. For me, a person living with Alzheimer’s Disease, I have a particular thought on the two. A puppy makes me feel happy, it’s fleeting and depends on external circumstances. Spending time with my family during the Thanksgiving and Christmas season, making new memories and remembering this season from the past brings me joy, an internal contentment. For me joy is also less than a feeling and more of an action, I rejoice gladly for the blessings I have in my family and friends during this season. I show them how I feel with actions of love.
I’m sure there are some that will read this and declare how could I possibly feel joy and rejoice given the circumstances of my disease and it’s prognosis. If you’re unfamiliar, there is currently no cure for Alzheimer’s Disease and it will, in all likelihood, eventually take my life if a cure is not found; typically in four to eight years from now. So where and how do I find joy and rejoice?
The crux of it for me my faith. About a decade ago I discovered the authentic Jesus Christ, accepted Him as my Lord and Savior and became a born-again christian. I’ve learned from my relationship with Jesus that I need to and should rejoice in every circumstances. I rely entirely on Christ, He is my strength and I place no blame on Him. If you are a christian you get this, if not I hope you are open minded enough to understand.
My faith is the foundation and upon which I live, day by day. I understand that my disease is part of me now, but it alone does not define who I am; rather it has added to an abundance of purpose for my life. Serving others that live with this disease is bringing me great purpose and joy now.
If you’ve been diagnosed with Alzheimer’s it’s very important never to deny it or yourself that you have the disease. For decades our society has perpetuated a culture that people with Alzheimer’s were to live in the shadows with shame. This mindset is changing thanks to organizations like the Alzheimer’s Association. For me, if I allow myself to feel any shame I will be denying myself, my faith and whom I server from allowing Him to work in me and through me to help myself and more important others living with Alzheimer’s.
This Christmas advent season the pastor of my church is taking us through the gifts of Christmas, one of the gifts is joy. The gift of joy is so powerful it can exist in us even though we have feelings of sorrow and fear and given our circumstance we can and will likely feel this, it’s only natural but we have joy to overcome these feelings. We need to know that joy is stronger than sorrow and fear. We need to remind ourselves that the world is filled with things that can make us fearful, but just as in the past before we were diagnosed we were able to find joy, now living with our disease does not preclude us from replacing feeling of fear and sorrow with joy.
I can no longer drive so I rely on family, my wife, mother and kids and my faith-family from my church who are always willing to help me get here and there when I need. Recently an 80 year old friend that just suffered from a heart attack gave me a ride home from prayer group. I asked her what she thought about joy, she told me “for me joy is a choice, I chose to be joyful.” That made such an impression on me. She serves our church and volunteers three days a week as an intake counselor at a local addiction recovery center. She hears so many stories of fear, grief and sorrow but in her years has gained the wisdom and understanding of how powerful and healing joy can be.
I know that change is inevitable. Over that last year my brain biology has changed due to the disease. My personality is different now, my expressions are different. I have no control over this. I understand this and I have impressed upon my family that the essence of who I am in my heart and who I have always been is still the same regardless of the outward expression. They get this but I can still see that it’s painful for them. I tell them my heart is still full of and overflowing with joy. This joy comes from my love for my family, their love of me, the peace I have in my faithfulness, and kindness and gentleness I show and receive from others. All of this is a culmination of this season.
May you find joy in every circumstance.
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