As I continue to hear stories of individuals living with dementia and their care partners stumbling through the dark during the pandemic, I am at a loss as to how to be supportive.
Sometimes people reach out to me. They want to tell me how they related to my blog. They want to tell me what they’re going through. They want advice. Or support. Or resources. Or something.
I don’t always know what they want to be honest, and I’m pretty sure I don’t often deliver.
I don’t have much to offer. I’m a listener. I empathize. I don’t tell them it’s going to be okay because I really don’t know if it will.
“It’ll all work out in the end” doesn’t seem to be an appropriate thing to say when someone might die without their family present.
For the next few weeks, I’m sharing stories.
Please refrain from judgment. Perhaps some of these people have made different decisions that you might have made. We are all just doing the best way can in the worst of circumstances.
So here goes:
Becky sends me a message. She’s a friend of a friend of a friend, and she reads my blog. Her mom has dementia and lives in a nursing home a few hours away. She hasn’t seen her since June.
The dementia has progressed quite a bit. Becky’s mom doesn’t get out of bed much these days. She can’t talk on the phone or Facetime. Although Becky gets frequent updates from the staff, she’s having trouble getting a grip on the changes that are occurring. It’s just hard when you’re not there, right?
Becky has worked from home since April. Her husband, Don, goes to work at a factory each day. She’s scared he will end up with COVID, but it’s not a good time to find a new job. They have four kids at home, ranging in age from 12 to 18. The kids’ schools seem to rotate between in-person, virtual learning, and cancelled altogether.
In addition, one of the kids has a health condition that, coupled with COVID, could be bad news. Becky and Don work hard to keep their family safe from the virus, but it’s exhausting. Becky has struggled with anxiety in the past, and (not surprisingly) 2020 has brought it back with a vengeance. She thought about doing some virtual counseling but doesn’t know if she has the time.
A few Saturdays ago, Don went to Wal-Mart. He came home with a some white paint and a small nightstand. He asked Becky to come outside to see what he had purchased.
He proudly told her that things were about the change for the better….he would be working on the basement bedroom so that Becky’s mom could come live with them.
He knew Becky hated not being able to see her mom. He heard her cry on the phone when nursing home staff would describe a new health problem. He knew she was sometimes literally sick to her stomach when she thought about how lonely her mom must be.
Being a well-intentioned problem-solving husband, Don had a solution. They would take Becky’s mom out of the nursing home and move her into the basement.
He did not get response he expected.
Becky was angry.
They hadn’t talked about this. Who would care for her all day when they were working? Could Becky take care of her mom while working full-time and being a homeschool teacher? Did they even have the medical skill to provide her the care she needed? What if Don brought COVID home from work and infected her?
She knew her mom didn’t sleep well at night. The nursing home said she often tried to get out of bed and worried she would fall. She was supposed to be putting limited weight on a previously broken hip, but she didn’t remember that. Would someone have to sleep in her room with her? Would someone have to stay up all night?
But what was Becky supposed to say.
She said she’d think about it.
The more she thought about it, the more she realized she was heading toward a mental health crisis if she allowed her mom to move in. If her mom moved in and it didn’t work, she wasn’t even sure the nursing home would take her back.
So she said no.
No judgement, please. Sometimes we all have to choose the best of a bunch of really bad options. That seems to be the name of the game in 2020.
We don’t get what we want in 2020. We have to pick among several things we really don’t want.
It’s like how you don’t want to cancel family Thanksgiving but you also don’t want your family to get COVID. There’s no good option there.
There is no shame in having limits, and there’s tremendous value in understanding those limits. Bad things happen when people don’t acknowledge their own mental and physical health needs.
Becky isn’t weak. She isn’t uncaring. She understands her decision and its potential consequences. She’s not stupid. She knows she may not see her mom alive again.
She carries a heavy backpack of guilt as she does her best to focus on her work at home while her kids needs her. To top things off, her husband is at home while he waits for COVID test results after an exposure at work.
She’d give her left arm for an afternoon alone. She spends a moderate amount of time sitting on the floor of her walk-in closet crying. She says she sometimes searches for “funny cats” on YouTube to get her through the day.
Don tells her things would be better if her mom came to live in the basement.
She’s still saying no.