niceolelevy

I’ve been wanting to write an update on Mom for a while now, because a lot has happened since my last post. But it’s been hard. Even before the world became consumed by COVID-19 and the fight for racial justice, it was hard. Because the truth of my mother’s life is that there will never be truly good news. She’s not going to get better. Not going to be cured.  We all know how her story ends, it’s just the details that have yet to fill in and take us to a “the end.”

But there are good moments. Even if they don’t always feel like truly good moments. Clarity is good.  Mom getting the right treatment is good. Her being safe is good. But all of that is almost always wrapped up in a heaping dose of bad.

Mom moved into her assisted living facility in January of 2019.  And for a while, things had a decent rhythm. We had a phone put in her room. Sometimes when she heard my voice, she was full of that rage I had gotten used to, convinced that somehow this was all my fault, certain that I had conspired to take her away from her home and lock her away.  Sometimes she was happy to hear from me. It was hard on me, but I understood that was the disease, not my mother. And it helped that she still had some joys.  My brother’s visits, which often included treats – she loves a doughnut — and sometimes meant lunches out at her favorite spot: Five Guys. She was always happy to receive a gift in the mail, even if it came from me.

It took a few months, but her anger toward me began to dissipate and then finally disappeared. Mostly, that meant she didn’t remember she was mad at me. But that was one memory I was okay with her losing. And when I flew east and went to visit her, she seemed genuinely happy to see me.

But her anger was still a problem generally. She’d get upset and say she was leaving the facility and tried a few times to walk out. So the facility staff became concerned. They suggested that maybe it was time for Mom to swap to a room in the memory care unit. We made the decision that they were right, even though we were reluctant. Mom’s personality was still so her, and the idea of her having even less freedom was hard to take. But her safety won out. And her level of care was becoming more demanding. That was undeniable. So the move to memory care was the right choice. I flew back once again, we picked out her new room, and made arrangements for the move. Thankfully it went smoothly… she has her bed, her baby doll, and her TV… really all she needs to be happy.

Then I had to go to Europe for two months for work. Which meant I was further from her than I’ve ever been in my life. I worried constantly that something might happen that meant I needed to rush back. And the times when my brother had to call with hard updates were incredibly difficult. Not so much because of the distance, but because I knew that even if I was there, standing right by her, there wasn’t much I could do to help.

The biggest news, the hardest thing to hear, also helped her. Which is the weird yin and yang of dealing with Alzheimer’s and Dementia related illnesses.

So what was it? Mom’s diagnosis changed. A doctor who finally gave her the care and attention we’d been hoping for since this started told us she has Lewy Body Dementia, not Alzheimer’s. With a side of Parkinson’s thrown in. The diagnosis made her symptoms that almost fit Alzheimer’s but not quite make sense – her delusions, her physical issues, including a stooped neck that looked so painful it made me cry, and the increasingly bad hand tremor that had left her nearly unable to feed herself.

The diagnosis also made the years before fall into sharper focus. That time my mom stopped speaking to me because she thought I owed her forty thousand dollars? A delusion, triggered by the LBD. So many of the fantastical or nonsensical things she relayed before we realized she was sick now made perfect sense… the doctors trying to steal her blood for experiments, the friends who were plotting against her, and all the terrible stories she made up about me and told her neighbors (which thankfully they never believed).

Per the new diagnosis, the doctor changed Mom’s medications. And something incredible happened. It was one of those “good news wrapped in bad” moments. Because yes, her diagnosis meant she was in worse shape than we’d even suspected. But it also meant proper treatment. My mother’s neck stoop all but disappeared. Her hand calmed down enough for her to feed herself again. And her emotional state evened out to a place where she was the most her she’d been since all this started.

We knew the improvements were temporary, because all of these illnesses are insidious bastards stealing our loved ones away one memory at a time. But it was lovely to see her regain some of herself after months of watching her fade away.

Of course, there’s always the bad of these things… and like I said, this was no exception. If we’re right about when my Mom’s illness began, based on her behaviors, she’s reaching the final year or two of the life expectancy with LBD after onset. So… *sighs* there’s that. But who knows? As stubborn as Mama Levy is, she’s going to live longer just to prove the doctors wrong.

When I saw her for Christmas last year, it was bittersweet. It was the happiest she’d been to see me since she moved to the east coast. And she remembered me – told someone I was her daughter even when I wasn’t in her sight line to give her a visual reminder. And she laughed. And smiled. And loved her presents. Especially the treats. I made her sweet potato pie bars and peanut butter cookies. She loved them. And my heart was overjoyed that I could still make her so happy. But there’s always the leaving. Leaving her breaks my heart. It will always hurt that I am not the one caring for her. I know that’s best for both of us. I know she’s getting patient care from people who understand her illness in a way I never will. But leaving her is devastating. Partly because I just want to be with her. Partly because I never know when I’ll become a stranger to her in between my visits and video calls.

In March, the movie that I co-wrote premiered in Memphis. And I had a cryfest over the fact that Mom not only couldn’t be there but didn’t even really understand what was happening when my brother and I told her.  So I took a picture of her and my father with me.  Carried it in my purse.  I know they’d both be so proud of me. If he was still here. If she was still herself. But that’s not how this story worked out and no one’s letting me rewrite it.

My brother went with me instead. Shared the moment. And it was so incredible to have him at my side.

I talked to Mom not long after. She asked me when I was coming to see her. So I started looking at flights. I had promised her more peanut butter cookies, after all.  And I always keep my promises.

And then COVID-19 changed everyone’s plans.

We have been incredibly lucky so far. My mom’s facility locked down early, and to the point of my writing this, they’ve only had two COVID cases. The staff was great about arranging video calls so I could see Mom and chat with her but staffing changes have made it more difficult as time has gone on. And of course, the illness makes it more difficult, too. Mom’s only good for about five minutes max on a video call, but it’s five minutes more than I would have without the call, so I take every minute and cherish it. But it’s obvious that she’s getting less lucid. I’m not sure if it’s just the inevitable shift or if not having us there in person to see her is making things move faster. But she can still laugh. Still say “I love you, too, Baby,” at the end of our calls.

I’ve learned to be grateful for moments and words and smiles and laughs. Every one of them matters.

Especially because the thing I feared most finally happened… one day they put me on a video call with her, and Mom didn’t know who I was. It was so obvious, and it tore my heart in two… but I had to keep it together and not break down because it would’ve upset her. So I smiled and kept trying to make her laugh and then ended the call. That’s when I saw the date… and realized it was the anniversary of my father’s dead.

My mom forgot me on the day my father died. Sometimes I want to punch the universe in its big, fat, stupid, unfair face.

It seems to have just been a bad day. She’s recognized me since… fussed at me… and she celebrated a birthday complete with a socially distanced visit from my brother and presents from me. But I have no idea when I’ll get to see her again in person.  When I can hug her and tell her how much I love her while my arms are tight around her. And that’s terrifying.

I worry every day that the phone might ring. That she’ll be sick… from COVID or the inevitable physical consequences of her illness.  That she fell somewhere and needs surgery.  That she just didn’t wake up.

I live for the idea of seeing her again. And I know there’s a very real chance it may never happen.

But I hope.  I hope for her.  For me.  I hope that I’ll get to see her do her little happy dance when she bites into one of my homemade cookies and feel her skin when I hold her hand, and that I’ll see that beautiful flicker of recognition in her eyes when she remembers who I am.

I hope.  Because there’s literally nothing else I can do.