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:
- 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.