by Joy Gerardi
Edna, you have Alzheimer’s. I watched my Mom release a huge sigh. It was as if a weight was lifted off her shoulders. She didn’t have to hide it anymore. She didn’t have to stay quiet so no one would find out. She didn’t have to act like nothing was wrong or live in fear of being figured out.
The doctor asked all three of us how long we thought she had the disease. Dad said a year, I said at least 3 years and Edna said, “A long time now.” The doctor told her, “Edna, you are a very smart woman; you have been able to hide this for a very long time.”
Alzheimer’s might be my Mom’s Disease, but my Family has Alzheimer’s. It affects all of us. We all have different roles, perspectives and ways of handling it, but we all live with it. One way of coping isn’t any easier than another. In fact, I believe it is hardest for the ones that are quieter about it. For the most part, my Dad and I deal with the day in and day out of my Mother’s care. Edna, or as I like to call her, Ed, lives at Ashley Gardens Alzheimer’s Special Care Center.
My Dad and I tag team making sure she sees at least one of us daily if not both of us. My sister visits as well. We have the routine down. Alzheimer’s is hard on us all, but I would say it is the hardest on my Dad and it is the easiest on me. I was born with the caregiver gene. My three siblings, it is tough for them for different reasons.
Our Alzheimer’s affects my Dad the most. Mom and Dad have been married for 65 years. To be together for that long and to now be separated is a hard blow. Marriage is a hard thing. And then to work that hard only to be apart at the end is not easy. Think The Notebook. My Dad takes such good care of my Mom, sitting with her everyday and then coming back every evening to tuck her in. She doesn’t understand why he leaves her and to put it mildly, can be very hard on him.
This is the hardest part for me. At 86 years old I watch our disease tear at him daily. I can coddle my Mom; it is him I worry about the most. Be careful not to over look the caregiver. This disease is hardest on them. I am not going to say it is easy, but I do believe that it is the easiest on me. Growing up, I was teased because I was a brown nose.
I want to care for my Mom. I have surrendered to it, our disease. I have surrendered to all of the oddities of all the Residents where my Mom lives. I truly love them all. By this point, I have relationships with just about all of them. I can see past the Alzheimer’s. I like to compare it the ocean and the currents. When the current is bad and you are caught in it, you get scared. If you get frantic and fight the current, you will drown. But if you relax, accept the waters, even enjoy it and trust it, you will be brought to the shore. I’m my mom’s happy. My goal everyday is to make her smile and to divert her to something happy when she is scared or anxious. I believe it is harder for my siblings.
What I have learned is not to judge them. They are not me. Not everyone can be a caregiver. And that is OK but what is most important to know is that does not mean they don’t deal with our Alzheimer’s. They do, just in a different way than I do.
So, if your family has Alzheimer’s, here a few suggestions. Surrender. Always have a diversion conversation. When they are anxious, have something happy you can talk about. Find the humor. I promise you it is there. Don’t be hard on the ones it is hardest on. The disease is not going to go away and the way you deal with it will make or break you. Make memories. It is a pleasure to care for my Mom and my Dad. Their time is more precious everyday and there will come a time when I wish I had one more day.
I do these little Ed and Me-isms. They remind me to enjoy my time with her.
Me: Ok mama, I’ve gotta get back to work.
Ed: Don’t leave, I don’t want to be alone.
Me: Ok, I won’t.
Ed: That’s why I love you
Ed: Oh! I’m so glad you are here!
Me: You are? Why is that Mama?
Ed: I can’t find my golf clubs. And I want to get out there before it gets too late.
Me: Don’t worry. If we don’t find them soon, you can just play the back 9.
Ed: Yeah, that sounds good.
Ed’s new tactic, she is tricky.
Ed: Joy, you can leave if you want.
Me: I’m good, I’ll leave in a bit.
Ed: Ok, and you can just drop me off at home when you leave.