At times, I thought I conquered the dementia. Those were the days where my mom had her memories, she would laugh and joke and we'd sit and reminisce. We'd talk about the good old days about going to lunch and shoppings on the weekends with Bubby and long games of Rummy. We'd laugh about the long drives through Potomac with Aba as he looked for work and he'd shout Yemina (right) or Smolah (left) to tell Mommy where to turn as they'd argue in Hebrew about money and other mundane things. We'd talk about romance novels and television shows and what's going on in the world or just hold hands and sing random songs and prayers in Hebrew just because we could. Those are the days that I still smile about.
Dementia fought back viciously. Dementia made her into an anxious and meek shell of a person; unlike the lively and bold woman who taught me to stand up for myself. Dementia took her ability to remember where her favorite earrings were, how many times she had called me, how many Klondike bars she ate . Dementia stole her ability to remember to shower and change her clothes, to know what season it was, and even how to do basic subtraction. Those were the days I'd come, crawl under the covers and bawl until I fell asleep.
I didn't give up; I couldn't. I wasn't going to abandon my mother, my mommy, my best friend. So I fought on.
When she was just diagnosed, I fought for her to still have her own apartment so that she could have some modicum of independence. Maybe it was foolishness but I thought giving her some independence back would help after the battles she fought living with her sister and then living with roommates. For a year, she was thrilled to have her own place again. She hated living by herself but she went to daycare everyday and she took the bus that came every morning by herself to her daycare and the same bus home.
She didn't know that I was making sure that her rent was paid, buying her her clothes, paying for her daycare, fighting with the resident manager who wanted to evict her after a month of her living there because of how much she annoyed the front desk person waiting for her bus (I won). I applied and reapplied for Medicaid consistantly getting rejected because she made just a little over with her social security. I did everything I could for her and to be with her while trying to work, attend grad school, and adjusting to being newly married. There were days I could have done better, I know. Days I should have had more patience, days I could have tried harder. I did the best I could single-handedly and I thought we were slowly climbing this uphill battle and we'd be victorious.
When the resident manager finally won nine months later in his desire to evict her (in his defense, she couldn't remember anymore where she lived and kept trying to break into the wrong apartment), I looked into new homes for her. One place scoffed at me when I said I could only afford $1100 a month; she asked me if I truly cared about my mother if we could only afford that much. Another wanted a minimum of $10K a month. I researched until I found a nursing home that I liked; one that my grandmother had been in and one that we could afford. All I needed was Medicaid and a coding.
My research didn't matter because dementia won. My mom had a breakdown one morning while still at her apartment and had to be hospitalized. She told the bus driver who she adored that if she didn't turn the bus around, she was going to get her gun and shoot everyone. Now mind you, my mom has never shot a gun, never held a gun in her life. But dementia didn't know that.I got a phone call that day from the county social worker telling me that the police were there and that it would be in our best interest to send her to the hospital to find out what was going on. I left work and drove to hospital to see her only to find my mommy heavily sedated in the psych ward. It might be one of the worst days of my life; I can still picture her lying in that bed barely able to speak. The hospital wouldn't let her return home and set out to find a nursing home that would be able to fit her new medical needs along with her new personality of fighting with anyone who came into her room whether verbally or physically. In one of her fits, she told me that I loved a rock more than her because I couldn't take her home with me. As soon as I left that day, I broke down sobbing. But on the plus side, the hospital applied for me Medicaid and the coding she needed. Even though at the end I didn't get the nursing home I wanted for her, they found me one close by that would take her and the little we could pay. I took that as a win.
I figured now with her in a nursing home with doctors making sure she'd take her medications, we'd get back to normal and I'd have my mom, my best friend, my confidante back. But I also snarked morosely in a fit of despair to my husband that for some reason people don't tend to live very long in nursing homes; statistically I had read, people live for about 3 months after being put into a nursing home.
Dementia must have overheard that comment and decided to prove that comment right.
Two months later, I found my mom nonresponsive in a wheelchair staring at the ceiling. We rushed her to the hospital where they found nothing wrong with her beyond rigidity; she started speaking again like nothing was wrong. That day in the hospital, I crawled into bed with her and we sat and cuddled and even napped together. She was lucid enough to realize that I've gone through hell and back with her and thanked me and told me how she loved me; I was floored that she was able to realize everything I've done for her. I told her how much I loved her and how we'd get through this.
My mom was rushed back to the hospital a week later rigid and nonresponsive. For a month, they ran test after test on her but nothing was found that was causing this. Eventually, the doctors simply stated it was end stage dementia and began preparing me for the worst. I wasn't giving up; I agreed to all the tests, had her transferred to a different hospital, agreed to the feeding tube that would sustain my mom's life. I did everything I could.
Dementia at this point had now taken everything from her even down to the ability to move, speak, or even eat. And still I fought.
I didn't lose hope until one hot day in July, I walked into what should have been just a regular meeting with the hospice nurse for updates. I was met with the nurse, the hospice Rabbi, and the hospice social worker. Immediately I knew this was more than just an update meeting.
It was the end for her; the sores were becoming too much, she was at high risk for sepsis. The question was bluntly asked: did I want a peaceful death or a painful death?
I called my husband and told him to come over from work and then I just lost it.
Everyone sat and consoled me; it was my choice to keep the hope alive or to let go. No matter which way I chose; everyone told me they'd understand and respect my decision but it was all on me.
In the end, to what might sound like giving up; I chose peaceful. I couldn't let my mom suffer anymore than she already had. My mommy had been through hell and back and it would have been selfish to keep her alive to suffer just so I could hold her hand. That day along with the day my mother passed away are the two worst days of my life.
Since then I've wondered, should I have let go earlier? Made different decisions? Chose different paths? The endless possibilities of what could have been lay out in front of me and that's something I will have to live with for the rest of my life. But a wise woman told me, any decision you have made is the right decision as there is no way you could know then what would have played out. So I take comfort in the fact that I fought dementia head on rather than cowering. I didn't lose hope and fought for my mom for as long as I could. For that, I think my mom would have been proud of me.