Mom spent 40 years working as a nurse and picking up side caregiving jobs to pay for the extras (me). When Alzheimer’s Disease tightened its grip to the point Mom could no longer live on her own, I couldn’t help.
My Father-in-Law had just moved in with us, his Lewy Body Dementia had already done to him what ALZ was doing to Mom. And with three elementary school aged kids, there was no room at the inn. There wasn’t even any more room we could make.
Assisted Living was our only and best choice given Mom’s care and quality of life needs. At that point in time, She had $278,000 to her name. Her life’s savings. Her life’s work. We felt lucky, we were lucky, but knew a clock was starting as soon as she moved in.
And now, 46 months later, it’s all gone thanks to a wretched disease and a broken system. It wasn’t spent on living the retirement life she’d dreamed of. It wasn’t spent on the bucket list trips she wanted to take. It didn’t fund her golden years.It was spent on her rent and care.
The writing has been on the wall since the day she moved into assisted living, no matter how much I tried to deny it.And today it became real.
Here’s the play-by-play.
6:30am: I woke up with eyes still heavy from a night of scarce sleep. My prevailing thought: “I can’t believe I have to do this to mom.” WTF
7:45am: I’m feeling nauseous but don’t know why. Wait a second, I know why. I’m about to take my mom out of her home for the last ~4 years and force her into being a ‘prisoner’ through a 10 day quarantine at the new place.
9:59am: I’m still sitting here working. I am really working but I’m also procrastinating because I don’t want to go do this.
10:23am: Just got an email from mom’s new place (the Medicaid place is what I call it in my head). It was an invoice for $18,000 to move in. I hate this disease and I hate this system.
Mom’s lucky. She has savings. They were drained at incredible speed but she still had them. Millions don’t. If this is the impact on Mom, what must it be for them?
11:57am: I’m driving to get mom and swaying sharply between fits of heavy sadness, disbelief, and what feels like vomit inducing guilt.
1:26pm: I’m there to pick up Mom but she’s refusing to leave. Won’t move from this position. I don’t know what to do.
1:30pm: I asked Mom to come help me with something in the car. I felt guilty taking that approach but it was necessary. And OMG. she’s walking with me now and I think she just cracked a smile. Selfie to prove it.
1:35pm: As I shut Mom’s car door, someone calls my name. It’s one of the front desk people stopped in her car telling me how much she enjoyed Mom and that she’ll miss her. It was nice. I could be reading into it, but the look on her face was also telling me this system sucks and your Mom shouldn’t have to leave.
1:45pm: We’re in the car finally and I’m wondering if this is the last time mom will drive on this road (she’s lived here since ‘88)
2:11pm: Of course it needs to be raining sideways. The rain is accelerating Mom’s backseat driving and it’s quickly found away through my wall of patience. We’re good though. I’m good (I think).
2:31pm: Mom’s still backseat driving. It’s amazing that her sentences are crisp and clear. Slow down, watch out for that car etc.
While I’m happy for the complete sentences, the backseat driving is reaching peak level of annoying. I’m telling myself to be zen. Somehow it’s working.
2:46pm: Backseat driving aside, it’s amazing being in a car with Mom. It’s been since Covid 1.0 since this has happened.
2:53pm: Mom touched my arm. A strange thing to report here but it sent a shiver down my spine. She‘s’ always had this touch when she’d be comforting me, scolding me, loving me. It’s her own unique touch. And that’s what just happened. Heart is full for a moment because it reminded me Mom’s in there.
3:01pm: We’re talking about Grafton (where she grew up and close to where she’s moving). It’s heart warming and super sad all at once. Heartwarming because she knows it and it’s so special to her and sad because she’s all over the place. But I lean into her world. Sigh.
3:30pm: The rain has finally slowed down so I can see the road again. Good. But we’re almost there and I’m losing my sh#% on the inside. Not good. Am I doing the right thing? I don’t have a choice. There’s always a choice. On and on it goes.
3:50pm: We pull into her new ‘home’. Lindsay’s thankfully there to meet us and distracts Mom with some new clothes. Now we wait.
3:57pm: Mom is escorted in, unbeknownst to her to a 10 day strict quarantine. I feel horrible for her. I’m petrified for her.
4:03pm: The Director of Nursing (DON) comes out to meet us and go over a few things. She’s smart, comforting, and strikes me as very honest. All of this gives me comfort, a bit anyway, but I’m still feeling like the worst human in the world to do this to my own mother. Mortified.
*Side note — ‘the DON’ has to be the best acronym in all of healthcare. Who wouldn’t like being referred to as ‘the DON’
4:09pm: a CNA comes out and pulls ‘the DON’ away for a brief and quiet conversation. Two minutes later, it happens again. I can’t help asking and my worst fear is confirmed. Mom is already wise to what’s happening and has begun fighting quarantine. Fighting being held prisoner. I can’t blame her and feel like something lower than the worst human on the planet.
4:15pm: We wrap up. ‘The DON’ assures me again that everything will be ok (I appreciate the sentiment but don’t believe it for a millisecond), I thank her and we move on our way. I’m numb.
What have I just done? What have I just been forced to do?
It was a day I want to forget but know I’ll never be able to.
That’s my perspective and I shudder to think about what it was like from Mom’s.