Prepared for Nothing

When I found out I was pregnant with Thor, I got right to work. I had daycare sorted out before my second sonogram. I had my ready-bag packed before I was showing. I knew where the best school districts were, and what it was going to take for us to be able to move into one by the time the Braxton Hicks started.
After he was born, I gave myself 2 weeks, then I started practicing time management for how we were going to get up, get dressed and get me to work on time while he was eating, pooping, barfing and crying all over me. I mean, I started getting us up drilling for how long it took to get him ready, then get me ready, then get him ready again, get out the door, drive the distance to where his daycare would be, estimate how long it would take to walk him in, drop him off, and get back into the car, then drive myself to work. By the time I went back to work when he was 5 weeks old, I was ready for everything but the actual emotion of leaving him in someone else’s arms.
You can’t drill for emotion.
I’ve been preparing myself for my mom to need memory care for almost two years. Shortly after moving her into Independent Living, we started working with home health care to try and help get her diabetes under control. After her third visit, the RN asked me to come talk to her privately.
“Your mom is going to need memory care,” she said. “And you need to prepare yourself for it. She’s doing okay right now, but she’s going to start going downhill. I’ve seen this a lot. And…sweetie…you’re going to need to do this sooner rather than later.”
It was a sad confirmation for me, but it validated my fears and gave me permission to start calling around.
I know it’s declasse to talk about money. I’m going to show you my roots by doing just that because money has been one of the biggest stressors for me in this journey.
For my mom to live in Independent Living with 3 meals a day provided and nothing else, her rent was $2700 a month–this was after I negotiated like my life depended on it.
This left my mom with $300 a month to cover any other expenses of things she needed/wanted. She needed phone service and insurance, personal grooming and prescriptions. She wanted a fully stocked refrigerator and bottled water, shopping trips and to buy things for her grandson.
So, it was either say no and just resign myself to the fact that she lived in a very fancy prison, or help fund her. That’s my mom. I’m not going to tell her she can’t have bottled water and a pair of new shoes. However, I will tell her she can’t have cases of Smart water, and she can only get one pair of new shoes.
When I started calling around to get pricing for memory care, I like to have passed out. Pricing was starting in the low $5000s. We couldn’t afford that. We just couldn’t.
That really propelled me forward into getting her house sold. That, and needing to get out from under the utility bills and insurance we were paying there.  I needed that nest egg for her.
Obviously, we are incredibly fortunate that my mom has an income at all, and that I have a job that lets me make up the differences, but once we moved her to Assisted Living (at $3600 a month) and then to memory care (at $4700 a month), I started having to take a piece of savings away every month to cover her rent.
I started doing Death Math.
Death Math goes like this: If it costs this much to keep you alive, and you have this much in savings, then you can afford to live this many years before I have to start looking for less appetizing solutions for you, or start a GoFundMyOld account to keep you in the good diapers.
My mom’s Death Math isn’t looking good. If she lives to be her father’s age, or her mother’s when they died, she’s looking at living 5 years longer than her savings account.
It’s gross and it’s a terrible way to think. But you know what? The memory care where Mom is is worth EVERY PENNY. She is safe, she is cared for, she is still able to kind of appreciate it. In five years, if her decline continues apace, she won’t know a mansion from a public restroom stall by the time I have to look for a place that will accept her on Medicaid.
As my husband said, “Drink the good wine first.”
But you see there? I’ve got all the numbers planned. I know exactly where she’ll go when she has to move. I’m ready.
I’ve been ready. I’ve been prepared (and thank god–I’ll tell you about that in another blog) for every eventuality. But I was not prepared for the moment I was sitting across from her as she babbled nonsense and I realized, “I miss my mom.”
Just like I was not prepared for the agony of dropping off my five-week-old baby, I was not prepared for the moment when I realized my mom was gone. Yeah, she was sitting right there in front of me, but that was just her body. My mom was gone.
My mom moving into memory care has meant less for me to do. In fact, it means that other than visiting, making sure she has pull-ups, and the occasional appointment, she’s out of my hands. That has meant me having more mental time and that has meant having time to miss her. I hadn’t even realized that was a luxury.
My mom’s been gone for two years. I’ve taken care of someone who looks like her, and who shares some personality traits, but I haven’t been able to have a conversation with that woman for two years. In the last two months, I haven’t even been able to get her to remember she saw me the day prior.
I wasn’t and am still not prepared for that.

My Mother’s Keeper

You’ll notice I haven’t posted here since September of 2017. I hadn’t even realized that until I came to make this post, which works out because the reason I stopped posting is also the reason I’m coming to post today: My mom.

On Facebook, I’ve been sharing a lot of the journey I’ve been on with her declining mental health over the past two years, but especially the past three months, and I’ve had so many people reach out I decided to share with a wider audience.

So, let’s start in September of 2017 and I’ll get you up to speed.

Actually, let’s start in October of 2008, when my mother was recovering from colorectal cancer in my home and I realized I was not a nurse, I was not a natural-born caregiver, and my mom was a double-fisted handful of impossible to please when she’s ill. I mean, I already knew that last part. I had remembered that from my childhood. What was new was realizing that my patience level had changed.

In October of 2008, my son was three, my husband was working full time and going to school full time. I was also working a stressful, full-time job, caring for my little family, and then driving 1.5 hours every night ONE WAY to visit my mother in the hospital, until I brought her home after a series of events in the hospital nearly killed her.

I learned that I had the patience to be my son’s mother or the patience to be my mother’s caregiver, but I did not enough for both–and that’s probably the healthiest realization I’ve ever come to and set me up for success in the following years. I don’t feel bad about that. I have limits and I know what they are.

From 2008 through 2014, at intervals, I would ferry my mother to and from appointments in order to be the detail-keeper. I took her to the MRI appointment when she took 3x the dosage of valium they had suggested and then behaved so cruelly and so badly that I chose not to connect with her for a couple of weeks after I was sure she was back to normal. (She needed the MRI because in a bout of what was increasingly erratic behavior, she had “playfully” charged my son like a bull, tripped, and busted open my front door with her head, pile-driving my then-7-year-old first-grader into a flight of stairs. She hit the door so hard, it knocked out a chunk of drywall when it hit the wall. A couple of years later, while “playfully” grabbing at my son, she would trip, fall, and break her arm.)

In 2014, when she had open-heart surgery, I reprised my role of caregiver both before and after her hospital stay, and was there when she went absolutely apeshit in the ICU for three days. I stayed at her house with her to help her settle in and it was pure, unadulterated misery for both of us. I couldn’t do anything right for her, and she couldn’t find any relief. My mom suffered every emotional side-effect associated with open-heart surgery, without the willingness to do anything the doctor or I asked her to do.

When we made our 6-week return to the surgeon, my mom (whose recovery had been arduous and unending) admitted that she had stopped taking any of the medication that had been prescribed after surgery because she didn’t think she needed it, and I lost my shit. I sat through the surgeon berating me for not taking better care of her, and not making sure she was taking her medication (I would ask, she would say yes, that was that.) I sat through her truculent response to his insistence that she take her medicine. And, I sat through at least five red lights on our way home before I absolutely lost my shit.

I was furious that I had spent so much time and expended so much emotional energy into her health, only to have her scoff and say she could cure herself with herbs. I was enraged that I had missed important things with my son so I could sit by her side while she recovered since she was just going to kill herself with a refusal to cooperate with the doctor after the fact. I was livid about all the pieces I had been forced to pick up before and after her surgery, and what all I’d had to give up and do just to make her home habitable for when she returned from the hospital. I had poured money, time, sweat, and a lot of tears into her health. All she had to do was take some pills.

Of course, it’s much more complicated than that. It always is.

A transient ischemic attack (or, TIA), is what kicked off the ER visit that led to the heart surgery. Now, I know that a TIA can also kick off or kick up levels of Vascular Dementia. With the 20/20 vision of hindsight, I can see that in the weeks and months after the TIA, my mom’s mental health was never the same. I can see that she honestly could not understand the importance of her medication routine. I can see that the part of her mind that helped her plan for the future, and helped her reason was crippled. I can see that my mother’s current diagnosis of vascular dementia probably got its start in 2014–maybe earlier.

All I knew then was that my mother knew she had Type 2 Diabetes and heart disease, and she wasn’t willing to do the work to manage either issue, and I had a child to raise and a marriage to foster. I had to work, and I had my own physical and mental health issues to deal with. So, unless she needed me for transportation due to anesthesia (colonoscopies 2x a year) or wanted company at the doctor, I released her to her own healthcare. I worried, but I let go of responsibility.

Over the course of the next three years, I saw (but did not recognize) all the symptoms of dementia in my mother:

  • Confusion
  • Trouble paying attention and concentrating
  • Reduced ability to organize thoughts or actions
  • Decline in ability to analyze a situation, develop an effective plan and communicate that plan to others
  • Difficulty deciding what to do next
  • Problems with memory
  • Restlessness and agitation
  • Unsteady gait
  • Sudden or frequent urge to urinate or inability to control passing urine
  • Depression or apathy

I started scouting senior living facilities because I was worried about her house falling down around her, and her not being able to manage or maintain it (and also because I plan in advance like I’m playing chess with Death), and I started trying to convince my mom that she needed to move.

We fought a lot. A LOT. Our usual daily communication dwindled because her behavior was so erratic and unsettling. She was not emotionally reliable, and I started pulling way back on the time she spent with my son because I felt like she was using him to fortify herself. It wasn’t healthy for him. She started asking him to lie for her, and that was the end of that. She thought I was mean and condescending. I thought she was stubborn and killing herself.

And that’s where we were in September of 2017, when after three days of her not answering her phone, I went to her house and found her wandering around pantsless and weeping.

And that’s the day I became my mother’s keeper.