My Mom has Alzheimer’s Disease. She has for many, many years and we just didn’t talk about it. In fact, we didn’t talk about it so much that people were pretty surprised when they found out. My Grandmother had it too. She lived with it for what seemed like forever. She lived in a nursing home for almost ten years before it finally ended her life at nearly 100 years old. Quite frankly, I think it is one of the shittiest diseases for the survivors there is. It isn’t great for the person who has it, in the beginning, but when they reach the point that they don’t know they have it, then I suppose there are worse things. Mom and I used to have a joke about it, because she always believed she would get it. When I was in my 20’s she would say to me “Elizabeth, if it happens to me, you come around the corner with a ball bat, and just take me out!” I would quip back, “Mom!! You know I look bad in orange!! I am not doing that!!” It was our way of trying to face her biggest fear and me not knowing how to ease the pain of the probable. Now, the “probable” has been a reality for many years and we are in the latent stages of this disease.

Friday, June 21st she turns 85, a far cry from her mother’s advanced age. Mom got it at a much younger age than her mother and has progressed somewhat faster than her mother did. That’s the funny thing about diseases, no two people have the same journey. There is no comparison and there is no way to know how one will react based on a family member’s experience. Mom will have another birthday party she won’t remember, with gifts she will try to give back or give away, and she will be happily confused! It will be wonderful to celebrate her, and she will be thankful and gracious as we do. Then as quick as it comes it will be gone forever. There is no retention and no more memories to be stored with her. They are now just stored with us. Her great grandchildren love to spend time and color or play “keepie uppie” and she still tells them to “take that ball outside” and “not in the house” for any activity she thinks is too much, even though it is something that the memory care unit does on a daily basis, inside! She still knows Mike and I, but she confuses the rest of the gang once in a while. The great grandkids are my children and that’s ok!! We don’t correct her, and the littles don’t either, which I think is remarkable for kids 6,4, and 2! She still talks about things today and yesterday and often times it all makes sense if you listen long enough. I get it because I can follow her, but if you don’t you might think it’s nonsense.

We are so incredibly blessed to have a facility like Cedarhurst There is a distinct difference between Presbyterian Manor and Cedarhurst when it comes to Memory Care Units. Well, truly, there is no comparison. Cedarhurst is certified in Memory care and has the facility to actually care for residents. They are active, outside, not zombied, engaged, out of their rooms, not lying in bed, not drugged, in brain stimulating activities, clean and dressed in their nice clothes, and they have an actual courtyard they can access freely. Fresh air is encouraged, and sunshine is welcome! I have yet to see the staff sitting on their phones while residents give each other haircuts! They get their own clothes back from the laundry and aren’t wearing the neighbor’s clothes! It is a community of people with varying degrees of needs, but who are able to live their lives to the fullest ability they can with dignity and compassion. A far cry from the lock up facility that we endured previously. I had a discussion this morning with the head nurse and I told her that one thing I noticed most was that when I would go get Mom out of Presbyterian, the look of panic on the residents faces and how they would all try to open doors, any door, only to find them all locked and how their bracelets would set off alarms. That when I would go to leave, how she would get the same traumatized look, and it would kill me to have to leave her there… yeah… We don’t have that anymore. I told her how very much we appreciate that, and we certainly don’t take it for granted. We are thankful for the care she receives and for each of the hardworking staff members. Oh! And by the way…. if you have a loved one with Alzheimer’s who is in a facility and they are packing up their room all of the time, don’t let them tell you “That is part of the disease” because it is not!! That is fear and unease! That is them trying to tell you that something is going on that they are uncomfortable with. Since my mom moved, she has not packed up her room one time. I wish I would have known that sooner. My experience with her former residence was nothing short of horrible. I will tell you that if you have a gut feeling, listen to it, you probably aren’t wrong.

As it is, this is where we are. Living, laughing at things we can, she still has a pretty good sense of humor, doing what we can to make it as good as possible and giving as much peace as possible! As the Grateful Dead said, “What a long, strange trip it’s been” and I couldn’t agree more! You couldn’t plan for this if you tried. You wouldn’t know how you would handle it even when you think you know it’s coming! You won’t know how you will handle it when it ends, either. At least I won’t. For now, we are going to celebrate another milestone birthday in great form, eat a little cake, sing a birthday song and smell a few flowers!! It’s going to be a great day!!

Until then,

Don’t take it for granted, your ability to remember…

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