alzheimers

July 7, 2023

Reflections of a Journey

I was a really weird kid growing up. I’ve been “myself” for as long as I can remember, marching to the beat of my own (off-beat) drummer. I was one to say “Thank you!” when a kid called me weird, with his eyebrows forming a single line of disbelief. Sure my response made me an odd-ball to my peers but then (and now) I rather have been weird than try and “fit in.”

One of my more obscure and bizarre characteristics was that I also craved “a struggle.” I distinctly remember watching “Angels in the Outfield” and being annoyed that I had two loving parents who were there for me. I wanted to be Joseph Gordon Levitt’s character, a foster kid who “wanted” a loving family, instead of actually having one. So, when I say I was weird, this is mainly where that statement roots.

From a young age I liked drama. I wanted a real story to tell and the one I was “living” wasn’t very “exciting.” I imagine that is why I became a writer. If I couldn’t have the drama I would cast myself as the lead and punish myself through the written word. Forcing myself through bizarre obstacles wherein I come out triumphant on the other side.

During high school I had longed for some “drama” because I felt as if life had grown too mundane for me, and then it turned topsy-turvy. I lost my circle of friends, I jumped out of the closet, and found a whole new group of companions. It was a strange time. The thought I had had at the settle of everything was “be careful what you wish for…”

In my early 30’s I felt as though my life had once again gotten stale. I had gotten stuck in a rut with my job, my relationship, and my emotions. Once again I longed for some sort of excitement or… Drama.

As I love to do, I once again reinforced the fact that I never, ever learn from my past mistakes.

In a whirlwind of events I lost my dad, my mom was diagnosed with Alzheimer’s and then my husband was diagnosed with a terminal illness. All in the span of a year. Oh, and the world was plunged into chaos with a pandemic. So life has been interesting since 2019.

I wrote all of that to say today marks the 1 year anniversary of my mother’s passing.

The first thing my husband said to me, after I got the news she had left this reality, “You’re an orphan now.”

It’s a strange realization. You never think of someone in their (mid) 30’s being an orphan. Yet once you no longer have your parents that’s exactly what you are.

I look back on those feelings of wanting to be “an orphan” and cringe. Why would anyone want that? Just for the sake of drama? That’s insane. Really… unhinged.

Yet if I break it down I think I wanted a struggle, a hero’s journey so to speak. Something that would be my “call to action” to bring me out of my complacency and put me on the path to becoming a “hero.”

When the call finally came, I was and am a very reluctant, flawed hero. Every bit of these past three years was thrust upon me and I want nothing to do with it. But being the valiant protagonist I accepted my fate, begrudgingly. It’s my desire to be the knight in white that keeps me going. Even on the days that I am so exhausted I just want to disappear from this world.

I hope I was the hero for my mom. Everyday I question whether or not my every choice was the right one. Even now, they feel wrong. I feel like I somehow failed my “quest.” But how did I expect it to end? There is no escaping the clutches of Alzheimer’s.

July 23, 2022

A Son’s Eulogy to His Mother

It’s truly an overwhelming task to write a eulogy. One wants to pen something that encapsulates everything about that person. Their strengths, accomplishments, joys and what their presence meant to those around them. The thing that inevitably happens is it is filtered through the writer’s personal prism and one’s own experiences. As a result, some things get lost or not told at all because of limited knowledge. Or even worse it becomes about the author and how that person effected them. But My mother meant so much to so many people that, to do so, would be a great disservice to her memory. For that, more than anything, I don’t want to fail.

This is my 4th draft. Every time I write one I sit there thinking that it just isn’t good enough or that I’ve missed some crucial part of who she was. Like her undying faith in Christ, even at the very end. Or how she exemplified what it was to be a true Christian. My mother was someone who lived with an open heart and an open hand to to help all who crossed her path.

In one I tried so hard to focus on the fact that while she wanted to be a stay at home mom of 7 kids, like the wonderful woman from which she got her name, she got more than 7 instead. She got them in her nieces in nephews. From the moment they came into her sphere they were everything to her. She took them shopping, trips to theme parks, and was an ear to bend when they felt like no one was listening. And I couldn’t bare to leave out how at times, for some, was another parental figure. When life took very unexpected and cruel turns she moved into their homes to help care for them. Family was of the utmost importance to her. And to leave that out would have been a sin.

Then there was the draft where I talked about how her life didn’t turn out the way she had planned as a housewife. I tried focusing on the beauty that comes in the unexpected. Like when my father noticed her from across a bar. The two hadn’t been what the other was looking for but the two turned out to be just what the other needed. They complemented each other in the most beautiful broken symmetry. She wanted to be needed and he needed to be loved. I wanted so much to impart how much they each loved the other. Even when things seemed so rough. They held onto each other ever tighter and merged that brokenness into a whole.

And with each of these drafts I had to mention her dedication to her job. She started working at State Farm in 1964 and stayed there until she was forced into early retirement in 2005. She would have kept working to this day if she had had the opportunity. Her work gave her such a sense of importance and held so much of her identity. Even when words and thoughts were difficult for her to convey she would somehow manage to talk of her 40 years of work.

And then most importantly I could not leave out how much she had wanted me. But that one was difficult for me to write. I never could include that in any of my drafts. I felt like it took the spotlight away from her and onto me. But I know she wouldn’t have been upset at that, because I was what she had wanted. While I may not have turned out entirely as she had planned, her and my father both never missed an opportunity to tell me how much I was wanted. Or to share how much they loved me, how proud they were of my accomplishments and my sense of self.

But try as I may in each version of this eulogy I could not capture who my mother was. She was so much more than just anecdotes or bullet points. She was love made human. Any would have known that the moment they met her. She may have been shy, but it was only because her love was so great she was worried that it would be dismissed.

I will leave you with some of the words that inspired her:

1 Corinthians 13:4-7 says “love is patient, love is kind, it does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self seeking, it is not easily angered, it keeps no records of wrongs. Love does not delight in evil  but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.”

February 15, 2022

The Soundtrack of My Life – 6 – I’m Not Okay

This song is my go-to emo ballad. I scream it at the top of my lungs until every ounce of breath has left them. I’m left gasping for air but it’s well worth it. No song evokes my inner rage more than this. The sudden build up and explosion of music brings to mind a big wheel perched at the top of a steep hill. With an unexpected push, I’m launched forward. My destination is only a hope as I’m hurtling downhill. The plastic pedals and wheels spinning uncontrollably. All I can do is keep my legs elevated out as not to get my pants knotted and twisted. Or, worse, have the skin stripped from my shins. The intro perfectly encapsulates the trajectory of my life from this point.

In a roundabout way I started to tell these little stories linearly. I hadn’t intended to do that, but that’s just the magic of writing sometimes. It takes me where it wants to go. And I blindly follow.

For a very brief moment my life was good. My husband had I had worked out our relationship. I met josh. I had finally passed my real estate appraiser’s exam and received my license. And I graduated Summa Cum Laude with my AA. My outlook was nothing but clear skies. Then began the downward descent.

I was having some pain and decided to go to the doctor. They did a CT scan of my abdomen and it was there that they noticed I had an enlarged prostate. They informed me of this little fact as I was on my way to the eye doctor for what turned out to be a bad case of pink eye. All-in-all it was a lovely day.

They sent me for bloodwork and more tests. At this point I had already decided that I had prostate cancer. What else could it be? I told my husband and boyfriend that I had no desire to treat it. It could lead to erectile dysfunction and I wasn’t about to live that life. Hard pass. (That joke was for us.) Both of them protested. It is one of the most treatable cancers and if left alone could spread to other parts of the body and turn into much more deadly forms of the disease.

After a rough couple months the final diagnosis was I just have an enlarged prostate. Along with an enlarged spleen. Two things no one would ever want to be big. I guess I just have all the luck, y’know.

Crisis averted! However it absolutely opened my eyes to the fear of disease and made me hyperaware of respecting someone’s wishes.

About a year after that my mother began acting very strange. It started with her speech. She was unable to say certain words and would explain how she could see it in her mind but couldn’t verbalize it. We went and had a brain scan done and the doctor ruled it a non-issue. The nurse practitioner recommended memorizing and saying bible verses. (I rolled my eyes so hard at that suggestion.)

Then my mother took a hard left turn. She talked about the walls of the house leaning. The floor feeling wet. And she would not stop shuffling papers. The real moment of absolute horror was when my mother sat and read and re-read the same single piece of paper for 30 minutes. It occurred to me that something was very, very wrong.

We went back and did another scan and in that time she had 7% brain mass loss. An average person with Alzheimer’s is usually at 3%. The next time we saw the doctor it was conclusive. She was in the early stages of the disease. The nurse whispered it to me while my parents sat at the other end of the exam room. Why I was the only one she bothered to tell is beyond me. Don’t you want to tell the person who has it?

Since then it has been every nurse or doctor whispering shit to just me and not her. “She can’t live on her own.” Yeah? Tell her that! My mother doesn’t believe me when I tell her stuff. Of the few things she can say without any trouble is: “that’s what you say.”

I remember the night my mother’s diagnosis became undeniable. I put this song on and screamed it all the way home, crying. All I could think about was how she would have all of her memories, her words, her identity ripped from her. In the end she will basically die because her body will have forgotten how to live.

But you really need to listen to me
Because I’m telling you the truth
I mean this, I’m okay! (Trust me)

October 6, 2021

Adventures in Adult Babysitting

When I was around the age of 14/15 I made a promise to my mom that I wouldn’t put her into a home. It was the same agreement she had made to her mother, my grandmother. And I wanted so much to keep the tradition alive. Then life became exceedingly complex.

Two weeks before I signed the papers for her to become a resident, she had fallen. It was the third time she had that month, and after the second fall where I had explained if she didn’t use a walker to get around and fell (again) she would move in with me. She flat out refused to use any kind of assistance device and because of it she fell, in the same bathroom my father had fallen in (for his third time that week) and hit his head, causing brain damage and his ultimate death. Every detail of that moment came flooding to my memory. I was livid. So, I sent my husband and brother-husband over to her house, help her up, and take her to our house.

For two weeks I came to a very harsh reality, that she was far worse than I had previously assumed. She can’t use eating utensils, she repeatedly has “accidents,” she can’t bathe herself and can’t even dress herself without assistance. The two weeks that she stayed with us, I had to do all of these things for her. Once they were done she would sit, happy as a clam, in her recliner watching movies. Had she been the only one I was responsible for, I probably would have trudged on to make it work, but that’s not the reality. I also have my husband.

For those who don’t know, my husband has ALS. He was diagnosed a year ago. As it is now, he can do very little for himself. He can still walk and stand, but he requires someone to assist him every time. While my mother was there I hardly got a chance to sit, which is fine, but it was not sustainable. And It was putting a lot of expectation and responsibility on the brother-husband. He may have signed up for my husband, but not some random lady he had only met (maybe) three times prior.

As much as I didn’t want to break my promise, I had to. And even though I have been told, repeatedly, that it was the right decision, all I can focus on is the fact that I did. I am no longer a man of my word. And I hate that.

To get out of that mindset, I sat down and tried to pick out why making such a strong, blanket promise like that is ridiculous. When I made it, I had no concept of adult responsibilities. I was working off the example my grandmother had set, while she lived with us. She was basically my third parent. She did housework, she watched me, she actively contributed. Because of her, I felt confident in agreeing to never commit my mother to assisted living. What I failed to take into account was life. Life is unpredictable and it’s main goal is to try and crush you and those around you. I know that sounds aggressive but when you really think about it, it’s true. Life isn’t a cake walk. It is a series of obstacles we must learn from to continue on to the next set. There is no rest. My mother’s Alzheimer’s is that obstacle. My husband’s ALS is another. I have learned and now we must move on.

On Monday, a month before my birthday, and four days after her own, I dropped her off in a memory care home. The weekend prior, I made every effort to make certain it wasn’t a surprise for her. I wanted her to be aware of the change that was about to occur. But I either failed miserably in explaining it, or she just didn’t understand. Regardless, when the day arrived she was distraught and terrified. There was no escaping the tsunami of guilt that “I just sprung this on her” and abandoned her at her most vulnerable.

The one thing I have learned from my mother’s diagnosis is that, if I ever have kids, I will make sure they know, without a doubt, that if pop-pop goes a little loopy that they should not HESITATE to put me somewhere safe. Even if I ramble on about not wanting to leave my home, I (at my absolute core) do not want them to waste a second debating what I would or wouldn’t want. If I have enough sense in me, in my older years, I will just move in on my own, like my grandmother-in-law.

I know that this is the right thing, and at times I feel it. But getting my heart to understand is something else entirely.