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.

Smoke and Mirrors: Word Counters

 

Counting my words again. 

Today my fellow Word Counters and I are sharing our monthly group post. Each month one group member picks  a number between 12 and 50. All participating bloggers are then challenged to write something (or a few somethings, as the case may be) using that exact number of words. Today we all share what we came up with.  

This month's number is 32. 

It was chosen by Mimi.

 

 

 

 

As I've been doing in these Word Counters posts, I've chosen a theme and am using my word count multiple times in keeping with the theme. This month I've chosen the theme Smoke and Mirrors, and I'll explain why.

~ There's a lot I like about some of the changes that came about in shopping during the age of covid. So much more is available online, for shipping and for pick up.

~ But there's also a lot that suffers from lack of personal contact. Not only can't you look someone in the eye to discuss issues, but many you cannot call on the phone.

~ Many retailers require you to "chat" with "customer service" online. This is an issue because most don't speak English well, and either don't understand or don't have the power to resolve issues.

~ My Amazon order showed what I chose with an incorrect description. "Chatted" with customer service, who would do nothing but tell me I'd "probably" get what I wanted, or should return it.

 

~ Same Amazon order.

Ordering email: Order to arrive Saturday.

Wednesday, checked order: "has not shipped, still arriving Saturday."

Thursday email: Order shipped, to arrive Sunday.
Saturday email: Order delivered, one day early!

 

~ We've had longstanding cable issues. They provided new boxes assuring us there's be no change to our bill, which immediately went up. Spent TWO HOURS "chatting" with FIVE reps, brain dead, all.

 

~ Facebook suddenly blocked me from editing a file in a group that I administer. I requested a review of their decision and stated my case. I'm still waiting. January was two years . . .

 

~ For PurDude's renter's insurance renewal, they texted a huge increase. Couldn't get customer service to respond anywhere, and found nowhere to cancel online. I had to hunt the CEO down on LinkedIn.

 

Eggnog & Espresso Chip Banana Bread

 

~ USPS continues its innovation in delivery: like screeching in reverse up my driveway to throw packages (including breakables) onto my front porch, then making sure to run over the lawn when leaving.

 

~ Recently the package required a signature. The signature remote didn't work, mailman just left. Message from sender said USPS reported us unavailable, we now have to pick it up from USPS ourselves. 

 

~ Another package. Mailman parked out front, then drove to the cluster box leaving a form saying we hadn't been home for receipt. I was here. I saw him. He never left the truck.

~ Congratulations, corporate America (and sorry, customer suckers). Customer Service and Shipping have merged. They'll now be the Smoke and Mirrors department. No services will be provided, but they'll keep pretending they are . . .

Here are links to the other Word Counters posts:

On the Border 

Messymimi’s Meanderings 

Eggnog & Espresso Chip Banana Bread       
                                                       ©www.BakingInATornado.com

Printable Recipe

Ingredients: 

3/4 stick butter, room temperature

3/4 cup sugar

1/2 cup brown sugar

2 eggs, room temperature

2 large or 3 small overripe bananas

1 cup eggnog, can substitute 1 cup half and half or vanilla creamer + 1/4 tsp cinnamon + 1/8 tsp nutmeg

2 1/4 cups plus 1/2 tsp flour, divided

1/2 tsp salt

2 tsp baking powder

1/3 cup espresso baking chips

Directions:
*Grease 2 loaf pans. Preheat oven to 325 degrees.

*Cream the butter and the sugars until smooth. Beat in the eggs, bananas, and eggnog. Mix in 2 1/4 cups of the flour, the salt, and the baking powder. Pour evenly into the 2 prepared loaf pans.

*Toss the espresso baking chips with the remaining 1/2 tsp flour to coat them. Sprinkle them evenly onto the top of the batter in each of the loaf pans.

*Bake for 45 - 55 minutes, until the tops spring back to the touch. Cool in the loaf pans for 10 minutes before removing to cool completely before slicing.

In the Process of Losing

Loss is a subject often discussed. Losing is not.

Loss is a permanent state of depletion. Losing is a prolonged torture. 

I've written about loss before. I don't make any attempt to define it because words are just not enough. Especially when it's new, but even many years later thoughts still have the ability to rip our hearts. Grief, at some level, is never-ending.

There are many kinds of loss. Sudden, no matter when it happens is always too soon. Expected. no less painful. I don't claim that one is better than the other. It all sucks, leaves us changed, in some ways diminished.

When we have had a loss, friends, neighbors, even acquaintances cocoon us. There are social and religious conventions that kick in, they come to our homes, bring meals, join in religious rites, call, text, email, send cards. Our community place their hearts with our as we take those first steps into grief.

Jamaican-Style Grilled Chicken

Going through the process of losing is altogether different: the cancer that took my brother and the Alzheimer's that stole my father were traumatic. On a daily basis. Having to watch someone slip away is nothing short of torture. 

Because when you are in the process of losing, you are actively moving towards loss. You know how this story ends, that agony is ahead. Your brain and your heart scream at you "turn back, don't go there" but the thrust forward is completely out of your control. You cannot turn back. You cannot even stop and catch your breath. 

And during these long, drawn out, devastating times we are not cocooned, we are book-ended. When that prognosis is first delivered we hear words of compassion and encouragement from friends, neighbors, acquaintances. Then, when the journey ends in the eventual loss, we are supported by all of the societal and/or religious rituals of mourning. But in between we frequently walk alone. By alone I mean as a family, of course, but they are as emotionally and physically diminished by the unremitting assault as we are. 

I have a friend, one I've never met, whose young daughter recently went through a year long cancer regime. Let me just say now that this is not a story of losing (well, a lot actually was lost, but not a life), her daughter is currently back home and in remission. But there is a correlation to be made through this example, and it's what got me thinking on these terms to begin with. 

When her daughter was first diagnosed, her family was surrounded with warmth and good wishes, hopes and prayers. And through that lifetime-long year, whenever she posted pictures or updates on social media they were met with an outpouring of love. I am many miles away, but I checked in with her privately on a regular basis, not only to see how her daughter was doing but ask about how she herself was coping. You know what she told me at one point? She said that she appreciated my checking in on a personal level, that I was one of very few who still did. 

I was shocked.

I do understand that when those around us are going through a long term crisis it is hard to reach out to them for a multitude of reasons. First of all, we fear we don't know the right thing to say, or what it's OK to ask. We are afraid of bothering them, that it's not the right time, or that they don't want to be forced to talk about their pain. Second, it brings us absolute terror. We put ourselves in their place and for even that one minute we just cannot deal, even hypothetically.

In many cases it's much simpler. It's that our lives go on, they are hectic and complicated. It's not that we forget what they're going through, we just don't focus on how quickly time flies by for us. But minutes, for them, move at once both excruciatingly slowly and with unbearable speed.

I'm not saying that those suffering through a prolonged period of losing don't have any support outside the family at all, of course they do. But between the diagnosis and the loss, it's not constant and consistent, it's spotty at best. And during this time it is not some level of compassion that's needed, it's all of it.

I have a few other friends, also ones I've never met, who are currently in the process of losing. I am committed to making sure that they are not just book-ended.

Because I now realize that if we have enough of a connection with a family to reach out at the beginning, and we know them well enough to support them in the end, then we should consider making the ongoing effort to be there to help fill the middle.

Jamaican-Style Grilled Chicken

                                                              ©www.BakingInATornado.com

Printable Recipe

Ingredients:
4 bone in chicken breasts
3 TBSP vegetable oil
2 TBSP Jamaican jerk marinade
2 cloves garlic
1 TBSP brown sugar
1/4 tsp cinnamon
1/2 tsp cumin
1 tsp paprika
1/4 tsp red pepper flakes

Directions:
*Rinse chicken and pat dry. Place chicken pieces into a gallon sized resealable bag.
*Mix together all of the remaining ingredients. Pour into the bag with the chicken and massage to be sure that all of the pieces of chicken are completely coated. Refrigerate for at least 4 hours and up to overnight, turning the bag now and then.
*Heat the grill to medium and grill the chicken, turning once, until the chicken is fully cooked and the juices run clear.

When You’re Not There

I am devastated. I have been for a while now. I’d like to say that I handled the news with maturity when I first read it, but I did not. I called PurDude (what I call my son, if you’re new here) and what I said was:

WHAT.  THE.  FUCK.

Sadly, I said it twice.

My son, my wonderful, intelligent, honorable, hardworking son is caught up in a heartbreaking situation.

This is his first year of college and he’s hundreds of miles away. He worked hard to get into a good school, chose a fraternity that requires high grades to stay a member in good standing and focuses on community service. That’s the kind of man he’s becoming and these are the values of the people he’s sought out to associate himself with.

PurDude lived in a dorm first semester. His roommate was foreign. Although there was not animosity, there wasn’t a connection either. Some people just don’t click. PurDude made lots of friends both in classes and in his dorm. He and 2 other boys formed “The Jew Crew”.  Despite the discomfort in his room, it was a fun time for him.

his side of his dorm room

When rush started, PurDude attended a number of functions. From the start he knew that there was a connection with one particular frat. They offered my son one of their first bids and although he checked out other fraternities, PurDude knew this was the right fit for him.

Once he was a Brother, we decided that PurDude would move into the frat for 2nd semester. He’d be taking some extremely difficult required classes that make or break Computer Science majors. I felt that it would be best for him to be in a more comfortable environment, and he would have a private room at the frat. We jumped through all kinds of hoops with the school, which required us not only to pay 60% of the dorm fee for a room he wouldn’t be living in, but 60% of the food he would not be eating. Absurd, but the frat deducted it from his room and board and ultimately we felt that this would be the best stress-free living environment for him. He moved in one week before coming home for winter break.

setting up his private room in the frat

While home, I reveled in the pride I saw in him for his association with this school, this frat and these friends. Especially with him so far away, to see him embraced, to see him thrive, I can’t even express how that feels as a parent.

About a week after returning to school, spring rush had begun and there was a party at his fraternity. Because PurDude is underage and because I had driven his car 700 miles up to him in October, he chose to work the party as a Sober Driver. These brothers are available throughout the night to drive anyone who’s been drinking at the party wherever they need to go.

A week after the party, a brother, a good friend of my son’s, was removed from the frat, banned from the school, taken away, arrested for rape.

Yes, you read that right.

The alleged incident took place the night of the party.

The frat was shut down by the university pending an investigation into an unsanctioned party and underage drinking (not the alleged rape, that is in the hands of the city police and prosecutor). Until further notice they were no longer a frat. Spring rush was over, the lights went out and these boys were left to come to terms with a devastating explosion in their lives.

 Obviously there’s much I can’t discuss here and now. What I am able to express is the frustration, the sheer helplessness a parent can feel when their child is caught up in something out of his control. When he’s hurt, when he’s distressed at what the alleged victim and her family are going through, when he’s questioning his ability to judge character in friendships, when his reputation is on the line, when he doesn’t know if his school will support or judge him harshly, when he’s grappling with how to take responsibility for what may have gone on in his home.

When you know that your child will forever be profoundly changed by what has, is, and will continue to happen. When he could very well be collateral damage.

And you are just plain not there.

I don’t want you to misconstrue what I’m not addressing here as my diminishing the gravity of the legal charges. Hardly. I’m crushed by the thought of it. What I know of the incident and the aftermath is haunting me. But I'm not going to publicly comment on these elements of this specific incident and this is why: 
 

*Rape: because there’s nothing to discuss. It’s not an issue with sides where you take one or the other. It’s wrong. Earth shattering wrong.

*Allegations of rape: because it’s not my place. I hope everyone directly involved gets the legal, medical and emotional help they deserve. But the bottom line is that although I’ve read stories, the media does not get everything right. Although I’ve heard stories, word of mouth is not the absolute truth either. The police will continue to investigate, there may or may not be a trial. This is how our system works and it’s not fair to anyone involved for me to publicly speculate.

*Underage drinking, whether or not it does happen on college campuses and did or did not happen in this in this instance will be determined  by people other than me.

In that first phone call there were so many things I wanted to say to my son, so much I wanted him to know and to understand. It is beyond frustrating that I’m not able to have these conversations face-to-face. That he’s so damn far away the first time that life really seriously kicks him in the face.

Shattered.

All of us.

Like most parents of teenagers, we’ve had conversations about alcohol and how it impairs judgment. About how it impairs your ability to see that you’re impaired. This is true whether you’re underage or of age.

We’ve also discussed rape. Many people think that these are difficult conversation. To me they’re not. They’re actually easy because there’s no grey area, it’s a simple matter of right and wrong.

But when you take rape out of the realm of the hypothetical and into an actual allegation, an actual arrest; when it involves friends on both sides of the equation, what the hell do you say then? This is something, as a parent, that you have to acknowledge that you will never, ever make right. On any level.

That day one of the things I wanted him to know was that the friendship he had with this boy was real. I personally met this boy and his family and found them all to be friendly and fun and personable. Now he’s accused of rape. How could my son wrap his head around this when I can’t? I wanted PurDude to know that people are complex, not all good or all bad. Whatever happened here, good people can do bad things, even horrendous things that can change the course of their lives. And others’ lives. That doesn’t mean that the friendship wasn’t real. I needed to validate my son’s period of mourning. Because he truly is mourning the loss of a friendship.

Of course my son grew up knowing about consequences. If I had a penny for every time I’ve said “there are consequences to your behavior” I’d be rich.

If there was a rape, there will be consequences. If there was underage drinking, there will be consequences. If the party wasn’t sanctioned, there will be consequences. Many of these charges are disputable but, again, I’m not going there.

Consequences are not always fair. There’s collateral damage too, and my son and his friends could well be just that. They could end up not being a fraternity. They could end up without a place to live. Their personal reputations could be called into question. They will forever be associated with this incident. The way they felt about their school, their frat, their friendships and themselves has changed. How do I help him make sense of this?

I can’t. I can only tell him that when you’re caught up in circumstances beyond your control, what you do from then on is who you are. Your understanding of how to negotiate life, your character, your strength, all are built on the foundation of these hardships.

There have been many conversations since that first one, we’ve video chatted in order to see his face as we try to support him through this time. There are texts and calls as he continues to try to: focus on class work, interview with the campus investigator and with the attorney hired for the frat, come to terms with the loss of a friendship, actively support the family of the alleged victim, as he goes through the university trial and sanctions, struggles with the details as they become public, deals with the media presence at his front door, the limbo that is his life for the forseeable future.

But all through that first night, as I grappled with that to say to him next, how to best help him pick up the pieces and try to form his life and his self image into some semblance of a whole picture again; as I decided to fly down there, then acknowledged that this instinct had to be suppressed, I came to terms with a truth. This is his to deal with. He can and he will because he is equipped.

Much later that night, just as I was putting my head down to try to catch a minute of sleep, I picked up my phone and, with tears in my eyes, texted my son:

I love you. I’m very proud of you. Always.

In Support

Today’s post is in support of a fellow blogger. She blogs at Life on Peanut Layne and she recently wrote a very brave and honest piece explaining her recent and continuing absence from blogging. She’s struggled for a very long time and has just, finally, been diagnosed with a very rare Autoimmune disorder. In her absence, many of us who’ve been lucky enough to have been amused by her for so long are going to try to keep her blog from sitting idle. So in the spirit of "putting my money where my mouth is" (yum), I’m up first. Click on this link: Life on Peanut Layne and come see what this picture is all about:

Many more guest posts by a diverse group of talented writers are coming up, so visit her often and catch them all.

Get well quick, Peanut Layne. And in the meantime, we’ve got your back.

An Open Letter

I have an acquaintance who is trying to live her life and raise her children the best she can.  In that struggle, she’s found herself in a unique circumstance.  She has proven her bravery by allowing the world in.  She’s been blogging her challenges, successes and failures at George. Jessie. Love. as she grows and parents in a situation she never expected to be in.

When you put something out there publicly you take a chance.  You are embraced by support but can also be pummeled by derision at a time when you are at your most vulnerable.  Here’s the thing about these situations. We don’t choose them, we’re just trying to live through them in the way that is best for our families.  They are infinitely more difficult if another component is to be publicly chastised.

I feel for her as I, too, have been in a situation I never expected to be in. I was also open about it, and was met with both support and criticism.  I’m in another one now that I am unable to share, I really don’t know if I would even if I could.  I don’t think I’m as brave as Julie.

Please know that we, all of us, have morals and values.  They are not specific to one religion or political party.  We all make choices based on our beliefs, morals and values, but I’ve yet to see a religious tenet that requires us to berate the choices of others whose actions don’t fall in line with ours.

Hatred and intolerance are a by-product of fear.  Those of us who are different from you:  be it our religion, color, nationality, abilities, sexual preference, physical or mental afflictions . . . we are not different out of any desire to frighten you.  As we walk our paths and make our decisions and live our lives we don’t make our choices based on a conspiracy to hurt you. 

When we are uncomfortable with someone’s life-choices, here are our choices as I see them:

*We can give in to our fear and publicly criticize those who choose a different path than the one we, although not in their situation, imagine we would choose. In my estimation, this is the ground zero of where bullying comes from.

*We can acknowledge that we imagine our choices in that situation would be different, maybe even better, but out of kindness and respect choose to keep it to ourselves.

*We can decide that even though these wouldn’t be our choices, we truly don’t know what these people are going through and compassion and support are key components to making the world a better place.  The world is full of people who are different from us.  Really, it’s OK to embrace that.

As we live our lives if we make mistakes (and we will) others can relish in that, even see it as proof that we were wrong to begin with. They can choose to kick us while we’re down or they can choose to help us back up.  Either way we will get back up and we will carry on.  With you or despite you.

This is a letter I sent to Julie back in February.  I share it, with her permission, in the hopes that we can all take a step back and rethink the purpose served by harshly judging others publicly, even those who admittedly put ourselves in the public arena of our own free will:

Julie:

Through comments of mutual FB friends I’ve seen some of your recent posts relating your experiences in going through your daughter’s journey. From the few posts I’ve seen it’s clear that you’re not naïve, you understand that there are people out there who will question your path.  You’ve started to construct a shield by both surrounding yourself with people who are supportive and blocking the access of those who would judge you harshly.  As you gain strength from those who support you, I recommend that you also consider the position of those who will judge you harshly. 

In terms of being judged, I can draw a lot of comparisons between your situation and the choices I made 20 years ago when I learned that the only way I had any chance of having children would be through IVF, in-vitro fertilization.  I took an uncertain path fraught with physical pain, emotional turmoil, baby steps forward and grand jetes backwards.   I, too, was open and honest about my choices, surrounded myself with the support of friends and family (which, mind you, is so much more difficult pre-FB), but I also found that you can’t escape the negativity forever.  I started IVF in a new (to me) conservative state in a locally unprecedented program headed by a doctor brought in from yet another state. This elicited editorials in the local paper making it clear that God made me infertile and by going through this process I was going against God’s will.  Let’s be clear.  You will be faced with hatred.  They are coming, with guns blazing.  They will aim a baseball bat at your head and chances are that bat will have God’s name on it. 

If, in your own private moments, you let those thoughts in and come to terms with exactly how you feel about them, I hope that this preparation can actually become another part of your shield.

I was pregnant 4 times with 5 children (including the twin of my older son, who I lost along with one of my tubes in emergency surgery during a tornado warning while my husband was out of town – no, not LOL – well, maybe LOL now but certainly not then).  While visiting family and pregnant with my younger son, I woke up at my mom’s house cramping and in a pool of blood.  My sister dropped everything, came to get me and stepped on my heels following me into an ultrasound kindly set up by a local gynecologist I hadn’t seen in 20 years.  We cried when we saw the heartbeat.  I had come home to name my first son in Temple and ended up sentenced to bed rest and double injections.  I was the only one not at the naming. At any point I could have (and if I’m going to be honest, did) question whether “the haters” were right.  Is God trying to tell me to stop? 

"They” say that God made me infertile, and changing that “goes against God’s will.”  Really?   I’m that powerful?  Or does God give us all challenges?  I ended up far from home at the same time that an amazing doctor ended up in that same place.  The time, the place, the doctor, these are all tools given to me by that same God.  No matter how difficult life gets, I cannot believe that God did not want these kids to exist, that it was a battle between God and I and I won.  Absurd.   I now have 2 sons, ages 16 and 17.  My 17 year old is currently putting me through all kinds of hell but I still do not question what I went through to get him here.  “The haters” forced me to look at my path through theireyes and the resulting strengthened conviction is a gift.

Ultimately you have to decide which of God’s children you think provide him/her with the most pride:  Those who ACT with BRAVERY based in LOVE, or those who JUDGE with HATRED based in COWARDICE?    

The haters say “how COULD you?”  We say “how could we NOT?” 

Those haters, invite them in Julie, then kick their ass!

Karen

*A final note:

There is a 35 acre plot of land in the midwest purchased by a Jewish Temple, an Episcopal Church, and a Mosque.  All three are building there together.  There will also be a fourth building, a Tri-Faith Center.

Those holy places are being built together because a large group of open-minded people committed to respect, even embrace, difference.  These people have the compassion and the courage of conviction to see that as a society we will be healthier and we will be stronger if we are able to be different . . . together.