Alzheimer's, the Battles and the War

I've been up close and personal with some really horrific diseases. I had patients with cancer, ALS, Huntington's, Myasthenia Gravis, all the stuff of nightmares. 

My first real job when I graduated college was as a social worker in a privately owned long term care facility. Then, a few years later, I became Director of Social Service in another of their homes. At that time I had close to 200 patients and all were either there short term for therapy, chronically ill or terminal. 

I went, each afternoon, to the head nurses' change of shift meeting. They are the ones who understand these diseases on a day to day basis, in a personal way. In those years I learned about the afflictions of the body from those who had them, those who treated them, and the family members who loved them.

And then there were the disorders of the brain. I don't know which is worse, to have your body decline, knowing each function you can no longer negotiate because your mind is sound? Or losing your memories, the essence of who you are, while your body stays relatively healthy?

Dementia was a familiar group of symptoms. Alzheimer's, a progressive disease, was fairly new to me. In many ways at that time we treated them similarly. But for the most part my patients with dementia were older and most had physical issues as well. But the Alzheimer's patients, many were younger. I couldn't help but feel the unfairness, the sense that it just wasn't their time.

I was in charge of admissions. I gathered medical information from the local hospitals, but I got the life stories and a sense of the progression of the struggles from the families.

One day a woman came in to talk to me about her mother, who was in her 60s and had Alzheimer's. As we spoke, I really came to like and respect this loving daughter. In my position I did my job equally for everyone, but with some family members, in that short pre-admission meeting, a bond was formed. As I gained an understanding of her decision to pursue admission for her mom (who she had, out of necessity, moved to her home a few years earlier), this woman laid her pain bare. She was mourning the loss of her mother, who was physically still alive.

I think she felt the connection we had made. What she did next told me that she certainly trusted me. 

"I carry this with me everywhere," she said, digging through her purse. "It's my mother's address book. I found it when I moved her in with me and cleaned out her house."

She handed it to me. I'm sure I had a quizzical look on my face as I took it. Yes, it was an address book. A pretty one, covered in pastel florals. But why she was handing it to me, I had no idea.

"Open it. Mom wrote something inside the front cover."

"I am in the dawn of my forgetfulness," I read.

I don't know when her mother wrote those words. I don't know exactly what she was feeling when she wrote them, but I saw that she knew. I had seen a lot at this point, but I can tell you that when I read them, felt the magnitude of what this woman was acknowledging, my heart broke a little that day.

Those few words had such a profound impact that I have never forgotten them. I can still picture the woman who wrote them, remember some of her continued decline, feel the empathy I had for her daughter when Alzheimer's ultimately won that battle. But I had no earthly way of knowing, back then, over 20 years ago, that those words would ring in my ears many years later. 

I don't know when it started with my dad. My stepmother would relate little incidents here and there over time but they felt like inconsequential stories, told in a matter-of-fact manner without any sense of urgency. Nothing that felt like it was building, that I put together as a clue to something serious.

Maybe I didn't know because I didn't want to know. Maybe I didn't know because I was living hundreds of miles away, raising two little boys, fully immersed in my own life, only seeing him one day a year. Or maybe my stepmother hid it. For him? For me? I don't know, but she was the best thing that ever happened to him so if that's part of the equation, I respect her decision. Ultimately she took it all on herself, his care, his safety, his nutrition, all things, all the time. I cannot imagine my partner becoming in many ways a toddler.

The first thing I remember that actually impacted me was a voicemail from dad. He was on the town Retirement Board and the message was for another board member, telling him that dad won't make the meeting that night. At first I laughed, dad hit the wrong button in his phone's memory. But it niggled at me, worked its way from my subconscious to a conscious concern. Even if he did hit the wrong number, didn't he hear that it was me on my outgoing message? If not my voice, didn't he hear me say my name?

I knew, really knew, when we flew home for a family function in 2008. We all got dressed up and I was so excited to be seeing all of my family again. Once inside, I was walking down an aisle when I looked up and saw, walking straight toward me, my dad. He looked great, one of those people who never seemed to age. I stopped, big smile on my face. 

He walked right past. 

I went after him, stopped him, hugged him telling him who I was. "Of course,", he claimed hugging me back, he knows who I am, he just hadn't seen me.

I hadn't known, fully known anyway, but now I did. It hit me like a sledgehammer. I felt it physically. He was past the dawn of his forgetfulness. 

There are amazing facilities these days geared towards patients with Alzheimer's Disease. Dad went to a brand new one on Cape Cod. My step mother bought a condo directly across the street and spent her days with him. 

And then in December of 2015 Alzheimer's took my dad. The final piece of him anyway.

It's now too late for my dad, for that patient of mine all those years ago and for far too many others. So my wish is not for him, or for them, it's for me. I want to live to see the day when Alzheimer's Disease no longer steals the essence of loved ones from their families. 

Alzheimer's is still winning individual battles, but it will not win the war. 

When I write this type of post, incorporating a recipe into the piece just doesn't feel right, so I'm sharing here at the end.

Lemon Berry Cake with Strawberry Lemonade Drizzle 

Lemon Berry Cake with Strawberry Lemonade Drizzle      

                                                       ©www.BakingInATornado.com

Printable Recipe

Ingredients:
3 large fresh strawberries
1/3 cup fresh blueberries
1/3 cup fresh raspberries
1 box lemon cake mix
1 box lemon instant pudding mix
1 tsp baking soda
1 cup water 
1/2 cup olive oil
1 TBSP vinegar
2 eggs

2 tsp strawberry lemonade mix crystals
1 TBSP lemon juice
3 TBSP water
3/4 cup powdered sugar

OPT: Additional fresh berries for garnish

Directions:
*Preheat the oven to 350 degrees. Grease and flour a bundt pan.
*Rinse the fruit and hull any strawberries. Leave blueberries whole but chop the strawberries and cut the raspberries in half. Set aside.
*Beat the cake mix, pudding mix, baking soda, water, olive oil vinegar and eggs for 2 minutes. Fold in the berries and pour evenly into the prepared pan.
*Bake for 35 to 40 minutes or until the center springs back to the touch. Cool in bundt pan for 10 minutes, run a knife around the edges and remove to cool completely.
*While the cake is cooling, mix the strawberry lemonade crystals with the lemon juice and water until the crystals dissolve.
*Once the cake is completely cooled, mix the powdered sugar into the lemonade mixture. It should be a drizzling consistency. Add just a little powdered sugar if it needs to be thicker or a little water if it needs to be thinner. Drizzle over the cooled cake.