The Preamble
I’ve been taking care of my mother in one way or another most of my life.
For the last 56 out of 67 years, I’ve been negotiating and looking after her emotional well-being and safety, or at least doing the best I could (see: the lost years, when heroin, booze & sex took precedence the best I could do was lie and try to hide it all from her to protect her).
For the last 12 years I’ve managed her legal and financial life.
Eight years ago I took over the rental and upkeep of the condo.
Six years ago, she moved in and I took responsibility for her physical well-being.
This year I’m setting up a trust and documentation on the off-chance I die first, because this is one healthy old lady.
This is not a complaint. I’m happy to do it all. I wouldn’t be alive today if wasn’t for her, and I’m not talking about the whole shooting me out of her vagina part, but the lost years, the part where she did her best to keep me from crashing into a metaphorical and literal flaming brick wall that I seemed intent on crashing into.
Ok, Now You’re Up to Date
At this point, she doesn’t need much from a caregiver.
I need someone to feed her two meals a day, get her showered, dressed, take her out in the wheelchair for ninety minutes a day and play with her. Entertain her. She’s out of her mind, but she still has fun. She is still silly and laughs and craves touch and company.
When we last met to talk about this, I thought I’d found someone perfect, she’d been caring for a friend’s dad. She trained for a day. Then, radio silence. JOSIE’d wound up in a women’s shelter and despite my efforts to work around that, I never heard from her after she said, “Really? That would be great.”
JUDY looked great on paper. Actually, she looked a lot like our weekday aide who we adore, had a lot of experience, and she lives close. She also has an eight-year-old and no childcare, so where Judy goes, Judy’s kid goes. I get that’s a difficult situation, but that wasn’t going to work well for anyone.
SOFINIA seemed good but wasn’t completely truthful about her experience and didn’t care for me showing her how we did things that conflicted with “how they taught us.” She walked out in the middle of her third shift, said I was micromanaging, which I translated to I might be a bitch. It’s possible, I might be a bitch. I might even be a real cunt and a control freak but, I’ve been caring for Mom for a pretty long time (see Preamble, above) and I’ve already made the mistakes. I know what works. Or at least I know what doesn’t.
KALLESHA was a nursing student (👍🏼), that hadn’t actually been accepted to nursing school yet (👎🏻) and had only worked with end-of-life dementia patients, turning them every two hours, like a pig on a spit (🐷).
EVITA came from Mirabella’s Filipino mafia of home health care aides and lives an 18-minute walk from us. She walked in, looked at my floor and asked for a broom. There’s a strong probability I am not only a bitch, but a bit of a slob. She’s good.
She struggles to get Mom up and walking with the walker. I might have to live with her work around using the transport chair to, well, transport Mom wherever she has to go. I might could live with that if I can make her understand that saying, “Don’t sleep on me, don’t sleep Elayne” (I think that’s what she’s saying), isn’t playing. It’s just poking a sleeping Mommy. But her accent is heavy and if I can’t understand her, I’m wondering how Mom will, given Mom barely understands me. But maybe it won’t matter for just that reason.
MICHAELA was born in Georgia, the country. She brought butter cookies and gave me a crash course in Georgia’s entire history. The Ottoman empire. Stalin. Turkey. The Caucasus. The problem with the Muslims, with the Bolsheviks. Her Jewish cousins. The three different alphabets. And this was before we’d even gone into Mom’s room.
She is lovely and kind and gentle and her voice reminds me of my grandma. She also lives more than 90 minutes away and doesn’t drive. That’s an uncomfortable ask for me and too long for her, she knew it when she got here. Distance stopped mattering when I found them in the bathroom after the shower. Michaela struggling to pull Mom up by the armpits, Mom squatting and hanging on to the bathroom grab bar, her naked ass inches from the floor as she screamed “No, No, No!”1
Compromise: No One Walks Away 100% Happy
So, there’s going to have to be compromise. I don’t like compromise, especially if I’m the one who has to give in. But maybe a wonderful aide five out of seven days is enough. Maybe it’s okay to have someone who is just okay. Maybe as Mom ages I have to change too, and as I expect less of her, expect less of those who care for her. Not in the level of how much they care, but in what they’re capable of.
If I want freedom on weekends, maybe fed, safe and clean is going to have to be enough. I have a sneaking suspicion this is a first cousin to having to choose between being right and being happy, because sometimes you just can’t have both
I need to hear from you. I need feedback.
What do you look for in caregivers for your family (children, parents, dogs)? What must-haves have you had to let go of and how did you do that?
More importantly, how do you let go of needing to control every little detail of a loved one’s care?
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For a quick second I flashed on Mom’s civil rights protests / passive resistance days.
I will always remember the caregiver journey for my father— it started with getting racist advice from my dentist (who was also my father’s dentist). I won’t spell it all out here - but he explained why the person needed to be Filipino after smearing every other cultural cohort. Then, I interviewed companies and got more innuendo about race/ethnicity. Annoyed and ignoring all of that noise, I found a great live-in caregiver for weekdays but went through 7 weekenders. You nailed it. Compromises- with a healthy dose of skepticism, suspicion and gut-trusting. As for pets, I will admit to being much more granular and involved than I was with my father. I wrote a 20 page manual to all the ways my cat and dog need to be cared for 24/7. Still, I know it gets customized and not followed but I have learned to turn that over to a higher power. Out of my control. My father died of a heart attack while the weekend person was there. I was out of town on business when I got the call. He didn’t like this caregiver and I discovered she falsified his signature and had him cash a check for 5K and she used his credit card at Target the day he died (which is what tipped me off to research finances). Anyway, I still feel icky about him dying on her watch — but I work through it. Sorry for this long comment but it struck a chord (as your beautiful writing always does.)
Your title totally described my caregiver journey. My mom came to live with me probably a little farther along in the dementia journey, but I didn't realize it. I was so naive. I started with going to care.com and self-selecting someone. I went through 3 and also learned the hard way that mom needed much more care than I thought she did. It was a definite work in progress and my mom's dementia was the type that made her completely unaware of what was going on with her. She was often argumentative and would tell the caregiver to go home. Or she would tell them other things and they would listen to her. She had a strong masking ability of her dementia and often those that didn't know her didn't think anything was wrong. This often caused communication challenges. I would be the bad guy because my mom could be so charming and manipulative (this wasn't dementia but her normal personality) and then my mom would turn on them and they would be so confused. As I discovered that she needed more care than I first realized I went to an agency. Lot's more money but at least someone else was responsible for scheduling and would find replacements if needed. We went through several caregivers and my mom became known as somewhat difficult and I was definitely extremely hands on. I wanted them to communicate with me during the day. This sometimes conflicted with agency rules. Eventually we found a caregiver that stayed for awhile but she was very needy and in order to keep her around we ended up doing way too much. She also became very territorial over my mom and started trying to cut me out of the loop. We changed to another agency at this point and had much better luck. But as my mom moved into late stage dementia she needed someone more experienced in this area. Hospice was called in as well at this point.
Caring for my mom in my home was much more complicated than I ever realized when I first decided to do it. And the complications increased as the dementia progressed. It's a full time job ( and I have a full time job) trying to manage it all.
My mom passed in May having had an angel of a caregiver for 3 months who helped me be a better daughter. It was such a blessing.