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)

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.

Mother Lament

I hate where I’m at, in regards to my mother. This is the most excruciatingly painful situation. Everyday it feels like someone is slowly dragging a long, jagged, knife across my stomach. More than anything I wish it was over. And hopefully it will be soon.

My mother’s want to go home is daily. It doesn’t matter that I have repeatedly told her she’s not going back. Nor does it register that I have specifically told her she will be living in a home, and have even asked her questions about the room arrangements. Either she doesn’t remember, or she refuses to listen and just demands to be returned to her house.

I have told her over and over that I don’t want to do this. I wish she could just stay in her house, but at this point it’s elder abuse. She can barely dress herself, she’s constantly having “accidents” and she can only eat finger foods. Silverware is absolutely out of the question. Should she use it, more of the food will end up on the same top she INSISTS on wearing everyday than in her mouth. The assisted living is the best option for her. And I wish she could understand that.

The other day my mom’s former “baby-sitter” mentioned care.com to look for a live-in caretaker. Little did I know that when I signed up I was creating a job-listing. Since then I have had two people inquire, and now I’m questioning if I should do the memory care facility. Oddly enough, going the in-home route is insanely expensive. Here I thought assisted living rent was astronomical but… this is outrageous. It would be such an added expense for her that she would lose most of her accrued income. All so she could “pretend” she doesn’t have Alzheimer’s.

One of the ways my mother manipulates me is that she likes to remind me that she gave me everything I wanted when I was a kid. Here I thought it was because she loved me. Little did I know it was a mob-boss loan to where one day she would require the debt be paid. And for her, it’s due.

My mother is only going to get worse and eventually will need to be in a care facility. Just pursuing this “in-home caretaker” nonsense will just postpone the inevitable. I need to just rip off the band-aid because the wound is infected and needs proper care. Or I risk losing the limb.

In search of a new home

This morning we began the search for an assisted living home for my mother. It started off with a super pricey place. For a non-shared room in memory care it’s $6k a month. That includes around the clock care, meals, and utilities. So that’s nice. We can swing it but any money she wanted to leave to me won’t exist. And I personally do not care.

While it’s super pricey I think I may end up going with this place because it’s close to where I live and that price is locked in permanently. Even if her level of care changes the monthly cost won’t change.

Our next stop will be at a group home on the other side of town. Care starts at around $3,200 but can go up depending on her level of attention. More than likely it’s going to be more than that because this woman will not stop pissing herself. It is constant and non-stop. Yesterday alone we blew through four adult diapers.

I have been blissfully unaware of her level of need up until recently. My mother’s prior “caretaker” would only tell me “gently” instead of coming right out saying, “hey, dude, she’s bad.” Then again, maybe she did and I just refused to see. It sucks how I will ignore obvious signs because I don’t want to see how much she has and is failing.

Body wise, my mother is a champ. The whole reason she even came to stay with us, while we look for a more permanent spot, is that she keeps falling. But goddamn if that bitch isn’t built like a linebacker. She had three falls and no damage. I walk by something, brush it too hard, and I bruise like a banana. Evidently I got more of my fathers genes. Maybe that means I won’t be at risk for dementia. Doubt it though.

I still think I should see other facilities to get a good idea of what’s best for her, but in the end I think I’ll choose the first one. Just cause I liked it and it’s available. I need to get her settled immediately. She refuses to live with me and I refuse to live with her. And my anger at seeing her decline is very real and uncontrollable. The moment she starts putting on the water works in her attempt to return to her house I lose it. Rationally I know it’s because I’m at odds with giving her want she wants, versus what she NEEDS. What she needs is not fun or easy to accomplish. And in the end, she’s miserable either way.