Alzheimer's, Reality and Hope

 

 June is Alzheimer's and Brain Awareness month. I'm recognizing this month in memory of two people I've lost. Not both of them to the Alzheimer's.

We lost my dad in 2015. Yes, to Alzheimer's. We lost Rena just a few months ago. Not to the disease. Both, to me, personify the struggles on both sides of the Alzheimer's fence. Both had to navigate daily life with the condition, even though both did not have it.

I write to process. And then to vent. It's a coping mechanism for me, a catharsis of sorts. In cases like this, not so much to get over it, but to take the first step, actively acknowledging the reality of it. Although we lost dad in December of 2015, it took me 4 months to be able to write about it, to make it real through words of my own. It was a raw, emotional piece, not about the disease itself, but the aftermath, facing the reality.

I call that first piece Daddy's Girl, and I hope you'll click over and read it. A piece of my heart sits on that page. 

We lost Rena this past March. And yet again, it took months to write about it. Just a month ago, I wrote Rena: Mourning to Missing. The reason Rena is part of this post is because she saw this disease from the other side. She was a caregiver. Not only a caregiver, but a fierce, tireless, vocal advocate for Alzheimer's awareness, for caregiver support, and an endless source of information. Her site, The Diary of An Alzheimer's Caregiver remains available, and if you're looking for facts, and hope, Rena left that behind as a gift to us all. 

In fact, it was at Rena's urging that I finally, in 2020, wrote a broader piece about the disease called Alzheimer's, the Battle and the War. For that piece, as I always do, I created a graphic. To my surprise, this graphic has been re-pinned on Pinterest more times than I ever could imagine. Making me both happy that people are interested, and sad, knowing how many people are affected.

I want to end on an up-note, with a few sweet thoughts. Reality intertwined with hope.

Strawberry Brownie Cupcakes

 

First, I wrote in my piece about the individual battles of the Alzheimer's war, that I had hope that I lived to see the day that the disease is eradicated. That hasn't yet happened, but there has been progress. Scientists now made some progress in identifying a cause of the disease, and there is an approved drug that could slow its progression. And with progress, there is hope.

And second, I want to leave you with Rena's words, those she lived by every day as she dealt with Alzheimer's in one way or another:

"Appreciate the good, laugh with the crazy, and deal with the rest."

Strawberry Brownie Cupcakes       

                                                                                      ©www.BakingInATornado.com

Printable Recipe

Ingredients:
1 box (18.3 oz) fudge brownie mix

1/4 cup water

2/3 cup oil

3 eggs

1 box (15.25 oz) strawberry cake mix

3/4 cup milk

1/2 cup oil

3 eggs

1/4 cup strawberry jam

OPT: powdered sugar, chocolate frosting, strawberry frosting and/or fresh strawberries for garnish 

Directions:

*Grease 18 cupcake wells. Preheat oven to 350 degrees.
*In a bowl, whisk together the brownie mix, water, 2/3 cup of oil, and three eggs. Set aside about 1/3 cup of the mix and divide the rest fairly evenly into the 18 greased wells. It doesn't have to be exact.

*Beat the strawberry cake mix, milk, remaining 1/2 cup of oil, remaining 3 eggs, and strawberry jam for 2 minutes. Fill the wells the rest of the way with the cake batter. Drizzle the reserved brownie batter over the top.

*Bake for 20 - 30 minutes, until the centers spring back to the touch. Allow to sit in the cupcake pans for 5 minutes before running a knife around the edges and removing. Cool completely.

*OPT: once completely cool, sprinkle with powdered sugar or top with chocolate or strawberry frosting and/or top with strawberries.

Rena: Mourning to Missing

 

A month and a half. It has been 45 days.

Not that I've been counting. Not in the literal sense, anyway. But when I started this post, that number at the top had been 3. It had been 3 days.

I wasn't ready.

Day after day, I changed the number and moved this draft to a further date on my posting calendar.

Friends sent me messages, asked if I'd be writing something. I told them the truth. I wasn't ready. 

I was starting to think I might never be ready. Maybe I couldn't do her justice, or maybe I just couldn't face it head on, the finality. But it nagged at me, the feeling that I would regret never having acknowledged her loss, paid tribute to who she was, and just how much so many of us have been cheated of experiencing with her in the future. So I set a date. Today. Forty-five days to gather my thoughts and do my best.

I've moved through some of the stages of grief, others linger. I'm not mad at her any more, but I can't get past the regret. The wanting a do-over. For her, of course, but for me too. Because I should have pushed harder.

Rena and I had been friends in the blogging world for about 10 years. She joined in almost all of the challenges I ran, but our bond was about so much more. We bounced ideas off of each other, helped each other with projects, shared our lives and our thoughts and our secrets with each other.

Rena died on March 18th. 

The day after she died, I posted our last conversations in a private FB group full of mutual friends.

I said:

{{Through the tears, I've given this a lot of thought and decided to share here because I know that in this group, Rena was loved and supported. She was a sharer, I believe she would have approved.}}

Friday morning 3/17:

Me: How are you this morning? Did you sleep?
Rena: Not too good last night, I had to cancel hip doctor, wasn't up to it. Very shaky and weak today.

Me: Low blood pressure?

Rena: Yes 80/68

Me: Did you eat?

Rena: Yes.

Me: Take it slow and easy. Did your doctor assess whether any of your anxiety meds could lower your blood pressure?

Rena: I'm going to doctor at 3 and I'm going to pack a bag for the hospital.

Me: I hope it doesn't come to that. Let me know what happens when you can.

Friday afternoon:
Rena: I'm at home. They pushed my oxygen up. He wants me to go back in the hospital.

Me: If he wants you to go back in, maybe you should. It will take a while to work out the right mix of oxygen and meds, and that is best done in the hospital where you can be closely monitored. I know you don't want to go, but think it through, talk to your husband, make a medically sound decision.

Rena: Probably go in the morning. We will see. That's exactly what he said. We had already packed a bag.

Me: I'm surprised you didn't go, I assumed you packed the bag because you planned to go if the doctor recommended it. I want you to just get this over with. Get the conditions under control, the meds and oxygen at optimal levels, and be able to move on. I don't think, if there are issues, you are better off at home, scaring yourself and scaring and stressing your husband. I think you're better off in the hospital until you are stabilized. Did you just not want to go today because it's Pat's birthday? I kinda get that.

{{it's eating at me, how much I want to take that last part back.}}

Rena: Yes, and it's cold and rainy. I was freezing and just wanted to get under my blankets. It's been pouring all day. Mostly because it's his birthday, and I know he's been waiting on KY to play tonight.

Me: Please take it easy.

Saturday morning 3/18:
Me: How are you this morning? Any decision about the hospital?

{{Rena died way too soon. But she died in her own home, in her own bed, and with the man she adored for over 30 years. That's going to have to be enough. Not today, but some day, for all of us who have loved her, that's going to have to be enough.}}

Rena and I talked almost every day. And the day before, we also had a conversation. One I'd like to finish now.

Thursday, March 16:

Rena: I'm concerned, my BP is 90/64 today.

Me: Be careful getting up. Did you call the doctor? Is the nurse coming in today?
Rena: No, I go to the doctor tomorrow. My daughter told me to eat something. I want to take a shower.

Me: I'd eat something, then wait a bit, I'm not sure standing in the shower is a good idea at this point.

Rena: I have a seat. I'm out now, it's up to 97/62.

Me: Better. Maybe you should leave something beside your bed to eat in the morning before you get up.

Rena: That's a good idea. Some club crackers or something.

Me: One of those packets of peanut butter crackers might be a good idea.

Rena: I hate peanut butter. Don't like chocolate, coffee, or cheese.

Me: What? I was thinking peanut butter for a bit of protein. Maybe get a package of individually wrapped protein bars that don't have any pb or chocolate in them. My son has an oats and honey flavor, but there are many other flavors too, just be sure they are the protein ones.

Rene: Ha, ha, don't like oats either.

Me: Who ARE you? 

She didn't answer, of course. She wasn't meant to. But today I'm going to try to answer for her. 

Rena was a woman of passions, her family was first and foremost. 

Alzheimer's awareness was another. Rena and I both lost a parent to Alzheimer's, but she nurtured, protected, and took care of her mother for years as Alzheimer's progressed inch by inch. Awareness was so important to her that she started the blog The Diary of an Alzheimer's Caregiver. 

The third was her mission to empower women through helping them spotlight their voice. She started a business supporting people in maximizing and perfecting their vision for their blogs. But more than that, if you weren't a client and had a question, she answered. Period.

Rena often told me I was her closest friend on line, but (to myself) I laughed, betting she said that to many people. Because Rena's superpower was supporting, spreading warmth, sharing her love with everyone in her world.

She had a moral compass that was unwavering, was furious about the division in this country, the state of our politics. But most of all, she was offended by the bigotry, the hatred, the lies, the abuse of power, the moral degradation and manipulation. And she ranted against it. Loudly. Often.

Rena was a genuine person, she worked hard to overcome, but never to hide, a painful childhood and a life altering accident as an adult. Despite physical limitations and emotional trauma, she made the choice to be a person who spoke the truth, grew and changed, helped where she could, railed against injustice. She shared unabashedly, reached out when she knew she was in needed, and returned the favor without question.

I grappled with whether or not to include a recipe today. But Rena, who confessed to not being a cook (and having inherited that from her mom), had, over the past few years, started to embrace the kitchen. And the garden. She was growing her own fruits and vegetables, more every year, and had started to see the fun in playing with recipes.

So for today I did decide to develop a recipe. Lemon Blueberry Crinkles. They're bold and soft, sweet and tart, complex and simple. My tribute to a friend who was all that and so much more.

Lemon Blueberry Crinkles

 

The day Rena's daughter offered me her sympathies, I broke a little. But I also broke through. 

I now accept that I will always miss her, may never stop saying to myself "oh, I can't wait to hear what Rena has to say about this . . ." Like trump's indictment, oh, how she would have loved that! But in order for me to do justice to our time together, to the memories and to the friendship, I need to stop associating those thoughts with pain, and accept them as the results of the gift of her friendship.

So, who was Rena? 

She was an empath. She didn't feel FOR you, she felt WITH you. 

Rena was a woman who loved with all of her heart. 

And I would know, I can feel it still.

Lemon Blueberry Crinkles         

                                                                                      ©www.BakingInATornado.com

Printable Recipe

Ingredients:
6 TBSP butter

1 box lemon cake mix

1/2 tsp lemon zest

1/4 tsp lemon extract

2 eggs

1/4 cup blueberry jam

1/3 cup powdered sugar

Directions:
*Melt the butter. Set aside to cool slightly. Mix together the cake mix, lemon zest, lemon extract, and eggs, then mix in the butter.

*Whisk the jam to loosen it a bit. Pour over the batter and, using a knife, cut in, just until barely incorporated into the dough. Don't completely mix in.

*Enclose the dough in plastic wrap and refrigerate for an hour.

*Preheat oven to 350 degrees. Cover baking sheets with parchment paper. Pour the powdered sugar into a bowl.

*One by one, using wet hand as the dough will be sticky, form the dough into 30 balls about 3/4 inch in diameter. Roll around in the powdered sugar, and place onto the baking sheets. Leave room, the cookies will spread.

*Bake for 12 - 14 minutes, until the cookies have spread and are set. Allow to sit on the baking sheet for 2 minutes before removing to cool completely.

 

 

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.