Living with Dementia
‘I found myself in dementia. I found out who I was.’
By AJ Cipperly
Hello friends! Welcome to my very first blog installment. Thank you for visiting. I’m excited, honored and proud to be a part of your journey. Whether you are caring directly for someone living with dementia, indirectly as a friend/neighbor or if you yourself are the one with the diagnosis, please know you are not alone.
There are many resources out there, so much information, and yet at times……not enough. My desire is to help you navigate some of the many resources, provide you with some direction and most of all, HOPE. Hope and belief that JOY can be found in this disease. The belief that it IS possible to live WELL with dementia. Life doesn’t end with a diagnosis. Is it different? Yes. But its not over. We must start there. With the idea that this diagnosis does change things, but it’s not finished. Many caregivers have told me that upon diagnosis, their doctor’s prescription was “take this medication and get your affairs in order and come back in six months”. How many of you have heard the same from your physician? We should all have our “affairs” in order regardless of any diagnosis so that’s not bad advice. However, its not hope and its not incredibly helpful in the midst of hearing that dreaded word “dementia”.
I suppose I should start with my perspective so you know where I’m coming from. My grandfather had Alzheimer’s many years ago. He lived far away from me, so I didn’t experience it the way my grandmother did as his primary caregiver. I didn’t experience it the way you likely are. I was young and ignorant of the disease and what it meant and what it was. Was it a foretelling of what was to come? Was it part of why I chose the path I’m on? Perhaps. I can’t make that connection directly. I only wish I knew then what I know now….maybe I could’ve helped my grandmother even from far away. However, as Teepa Snow says (my paraphrasing),”Its not about what you didn’t know and feeling guilty about what you did wrong, its about what are you going to do differently with what you know now”.
Its been 17 years since I started my dementia journey. I have acquired much experience and knowledge on this trip. In the beginning however, I had no clue what I was doing. I didn’t receive a lot of training before being placed in a direct care role. As is likely the case for you, no one gave me a “handbook” or “guide” on being a caregiver. So I struggled…..I didn’t know what to say, how to act or even what was going on in the brains of people living with dementia. What I did know was that it was very depressing. To watch people being confused, looking for their long dead relatives, not recognizing their loved ones……so different from the people they used to be. Listening to the families talk about their emotional struggle, not understanding what was happening and why. A person’s full, vibrant and successful life reduced to this daily confusion and helplessness. So I struggled, struggled with my own depression and wondering if I really could do this.
Then there was a moment when it seemed to click. It clicked for me when I stopped focusing on everything the person had lost and instead chose to see what was still there. They could still give love and receive love. They could have good moments and good days. They still had a great sense of humor and could laugh at the silliest things or cry with no shame or embarrassment. They could be themselves with no concern for what other people thought about them (and oh, how I envied that!).
Did it become easy all of a sudden? Absolutely not. Did I still struggle? Of course I did. But I began to see the bright side; I began to see the good moments that I could help create for those I was caring for. And most of all…..I began to see the change they were making in me.
You see, I’m a different person because of dementia. A better person. Each person I’ve cared for I’ve learned from. They have shaped who I’ve become. Mickey taught me patience….oh yes, LOADS of patience. Jean taught me the importance of maintaining life long habits- even if they’re not good ones. Grace taught me that sitting in a wheelchair all day is NOT fun. Margie taught me that I had a lot more to learn about putting on “adult diapers”. Dorothy taught me to not wait, that life is short and to have no regrets. Glenna showed me that faith and humor still remain throughout this disease. And Juanita….oh, the things that Juanita taught me. Mainly and most importantly, she taught me the importance of relationships. These were not all easy lessons to learn. Some were fun, and most were hard. And scary. And of course I didn’t appreciate these lessons as they were being taught….often its only later that we can look back and see what we were “shown”.
I found myself in dementia. I found out who I was. These individuals, along with many more showed me who I was and taught me that I could truly be myself and that it was okay. Someone once told me that she thought dementia was God’s way of teaching us unconditional love. Because loving someone with dementia requires you to love no matter what.
My point in sharing this is to honor and recognize those who helped shape me back then and continue to do that even now- every day. But also to help you understand that people living with dementia have so much to give. So much to offer- so much to teach us. They are our teachers. We must be open to learn, to receive what they have to give. We have to be willing to see what they still have instead of only what they’ve lost, what we’ve lost and what we’re continuing to lose.
Dementia is real. We haven’t found a way to fix it yet. I pray we do! Until then, we can choose to find purpose and meaning or we can spend our days finding only devastation and disease.
In this blog you’ll find honesty, for I don’t have all the answers and don’t claim to; practical day to day information, because that’s what we need; fear, yes, for this is a scary journey at times, humor, because we have to laugh, tears, because we have to cry, and hope. My desire is to work alongside you, together finding the answers, together finding courage and together finding the joy. Learning from each other and most of all, learning from those we know and love who are living with dementia.