Independence Day

On this July 4th, as we celebrate America’s proud declaration of independence from Britain some 242 years ago, many of us are struggling with oppression and are fighting a vicious and prolonged battle of our own – Alzheimer’s Disease.

From a very young age, we all want to be self-reliant and to make decisions and take actions of our own free-will. Growing responsibilities (and life in general) can sometimes pose a threat to these freedoms, but over time we find our own ways to feel in control and happy with our independent adult lives. In his book, “Dementia Beyond Disease,” Dr. G. Allen Power says that there are seven ‘Domains of Well-Being’: Identity, Connectedness, Security, Autonomy, Meaning, Growth and Joy. When dealing with Alzheimer’s, ‘autonomy’ (aka independence) is the domain that is most immediately threatened and directly impacts our quality of life.

Dementia’s grip on independence is slow and steady… and irreversible (for now!)

It starts with small things like taking away the car keys, and progresses to the eventual inability to breathe or perform other basic functions of human life. Dementia transforms even the strongest and most reliable into the helpless and dependent, taking its demoralizing toll along the way. But it’s not just the diagnosed who lose their independence: it’s also their caregivers.

At some point along the caregiving journey, all of us realize that this can not be done alone. We rely heavily on our friends, family and each other to get through the day and to find time for ourselves. It’s a strangely ironic situation:

Caregivers become dependent on others so that others can depend on them

So what’s the positive spin to help us get through this battle? Well.. there are a few, actually.

Remember that although Alzheimer’s means a progressive path towards losing independence for the diagnosed, it doesn’t mean the same for the caregiver! You do not have to share the fate and become the ‘second victim’.

Finding paths to feeling good about your own sense of freedom and free-will will make you a happier, healthier and more effective caregiver. This might be through carving out a little ‘me time’ each day, or maybe just throwing a ‘Tea Party’ for you and a few friends every now and then 😉 Whatever works for you! The more help we get for ourselves, the better we can help others.

There are also high quality memory care options all across this great country that focus on prolonging the quality of life and independence for those with Alzheimer’s and dementia in a safe and controlled way. These communities have each patient’s self-respect and dignity at the forefront and help stave off the inevitable loss of autonomy as long as possible. Care communities and support groups are the caregiver’s allies in the war against Alzheimer’s!

So, on this day, while we celebrate our independence as a nation – let’s also celebrate those who we are dependent on – as they are who truly give us our own freedom and allow us to be the best caregivers we can be!


  1. Dear Kim. I totally agree with what you expressed and lived. I too, had a mother with Alzheimers that needed 24/7/365 care and my father provided it and refused help. We knew that he was not going to be able to provide it forever.
    I, as a nurse- (Emergency nurse), decided to open a fully licensed assisted living. The caveat was that it had to be affordable for the average Joe. Most people cannot afford the specialized assisted living. This was a long, expensive, and tedious process. We opened but unfortunately my mom died before she made it there. Today, 9 years later we are still going in Maryland but it is difficult to keep the rates down and pay our bills. We dont have a stellar facade with bells and whistles but we provide top notch 24/7 care. Would love to hear from you.



  3. Stacey Upchurch says:

    Dear Kim,

    I too was lead to this site from the article in Parade which my daughter gave to me. My husband, 74, and I, 61, have been married for 37 years. He was diagnosed almost 6 years ago. He is still at home but I don’t know how much more I can handle. While I am so sorry you had to go through this wretched disease, it has comforted me to find someone else who went through this with their husband. It seems like everything I read is about someone’s parent and while I know it is heartbreaking, it is so very different going through this with a spouse. Our life as we knew it, has come to an abrupt halt to say the least. Right when I thought we would be able to start planning our retirement years, it was ripped away from us. We are no longer able to travel, have friends over, not to mention the time taken away from our children and grandchildren. So I know we are about to embark on a new chapter as we look for the right loving home for him, but I am still having a hard wrapping my head around the idea of him not being at home. I worry if he will be cared for properly. It’s heart wrenching as I’m sure you know. I’m considering flying down to see and tour Abe’s Garden so I have something to compare to since you endorsed their care. The thought of him being neglected is unbearable.(We’ve all heard the horror stories.)
    I do know God has a plan and I am grateful He is in control. Now, I just need to let go and let Him take over. Once again, thank you for this site. I have found much comfort in it. Praying the days have gotten a bit easier for you and will continue to.

  4. Richard and Wendy Lanza says:

    Dear Kim,
    I was given the article in Parade by a neighbor friend when I opened up to her and told her that my husband was recently diagnosed with early onset Alzheimer’s. Like you did with Glen, I too saw the “signs”, but explained them away … being over-tired, normal forgetfulness that comes with age, etc. Doing my own research and reading other’s stories, I now realize what a truly devasting disease this is. First, my heart breaks for my wonderful husband–my everything-‘that this is the life that lies before him. And as for me, my heart is shattered that I will lose my best friend and love of my life. During a recent hospital stay, he looked up at me and said, “Wendy, why can’t I remember anything?” I told him, “It’s okay, honey, I’ll remember for both of us.” I thank God, that according to his Dr., he is in the early stages, so he is still very much “him”. But, I fear the days in the future when that will change. I don’t want to lose him … to lose us .

  5. Betty Conley says:

    Kim my husband of 50 years just got Altzheimers the beginning of 2018. Our 50th Anniversary was June 15. We are raising 4 grandkids so it is really hard having to do everything by myself. Hes been writing books ever since he got it. He said God gave him an enlightenment and he needs to help the world be good. We have to sell our home because I cant keep up and we cant do a business that we were doing to support our family. We were big fans of Glen. Im hoping I dont have to put my husband in a home. Thanks for sharing.

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