Happy National Caregivers Day!

Happy National Caregivers Day! It has been approximately three years since Maureen was able to speak. Almost all of you have never had the opportunity to get to know her—other than through all the stories we have shared with you.

So, I am going to do my level best to express what Maureen would say to each of you if she were able on this most auspicious day.

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Dear Barb, Dalia, Djon, Emily, Joanna, Luda, Marie, Maya, Mayla, Merrianne and Sister Roberta:

Happy National Caregivers Day. I wish I could say this to you. Unfortunately, I can no longer speak. So, I am going to entrust my brother Brian to express my thoughts on this day celebrating your vocation.

My dad had dementia at the time of his death in February of 2011. It was difficult for me to visit him at times. He was a very intelligent man. His intellect defined him. I struggled to keep my emotions in check when I saw what dementia did to him. How it robbed him of his brilliance and dignity. Little did I know that I too would face dementia down the road.

We celebrated his 80th birthday in October of 2010—just four months prior to his death. I shared the following wish for him in a book we created to commemorate this milestone, “My birthday wish for dad is inner peace. I hope that every day you are happy and that you smile a lot.”

I first began to experience signs of dementia in 2017— losing my keys, misplacing my purse and forgetting dates and facts were the early red flags that something was wrong. As these occurrences became more frequent, based on what I saw my dad experience, the thought of walking the same road scared me to death. I had so much fear and anxiety. The future was suddenly filled with uncertainty. This was definitely not how I envisioned my life unfolding. I had been looking forward to spending many more years, hopefully decades, enjoying life with my husband, son, family and close friends. Alas, God had a different plan in mind.

Many questions came to mind. How rapidly would the dementia progress? Who would take care of me? Would I be able to remain in my home? What is going to happen to Tom and Tommy? Who will take care of them? How will they be impacted by the cross that God has placed on my shoulders? This is one of the most unnerving and frustrating aspects of dementia—there are a million questions and not a single answer.

Dementia is a horrible disease. It approaches silently and simply does not stop—not for any reason, at any time for anyone. This disease robs all of its victims of their identity, intellect, independence and dignity.

The vast majority of human beings who suffer at the hands of dementia are left to fend for themselves. This journey places a massive burden on families and friends. Often, most have no choice but to place their loved ones in a care facility.

And then each of you, one by one, entered my life. One of the few silver linings of this arduous journey during the last four plus years has been your presence in my life. I am at a loss to formulate a set of words that will even remotely do justice to the contributions you have made to my physical and mental well-being. The countless little and big tasks you do every day on my behalf make all the difference in the world. Your constant care and attention to detail has enabled me to maintain some semblance of dignity—a blessing not enjoyed by many people with late-stage dementia.

Thank you for providing quality, consistent and compassionate care to me. Thank you for being aware of how humbling and humiliating it is for me to be dependent on each of you to perform all of the basic activities of daily life. Thank you for the subtle ways you also care for Tom, Tommy and the members of my family. Most importantly, thank you for being a constant presence to me as I continue this journey battling dementia. As a result of your willingness to be by my side along with all of the members of my family, I know I will never walk alone. You have no idea how much that means to me.

You are a group of truly extraordinary human beings. Something more than blind luck brought us together. I suspect the Good Lord had something to do with it. You have left lasting footprints on my heart and soul. Thank you for accepting the invitation to walk this journey with me. It is such a blessing to be cared for by a team of competent and caring professionals. I am and always will be forever grateful for your care, compassion and concern. May God bless and keep watch over you and all of the members of your family. Happy National Caregivers Day.

Sincerely your friend,

Maureen