Or, rather, how not to ask for help.
Yesterday, my husband received an impassioned plea for help from his sister, who is caregiving for their elderly parents. The 2011 AARP policy document, Valuing the Invaluable, reported that women who care for older family members, spend an average of 20 hours per week doing caregiving responsibilities. This includes hands-on caregiving, arranging for doctor’s appointments, managing parental finances, providing friendship and support, and countless other tasks.
For a moment, think about your life. Now add a 20 hour a week part-time job – a thankless job because those being cared for often resent it or have cognitive decline that makes them blind to it. Could you do it?
Often the family caregiver is the one who recognizes, before anyone else does, that mom or dad needs help. They are the one who steps in to do the work because, if they don’t do it, no one will. In my family, my sister recognized long before I did, that mom wasn’t able to care for her enormous dream house in the woods – it had gotten to be too much for her – or her health. She was the one who saw that mom didn’t go to the doctor when she broke her wrist, or let that nagging cough turn into a pneumonia that eventually scarred her lungs and left her needing oxygen. She was the one who took the initiative to get mom to move nearer to her so that she could keep an eye on her health and make sure she went to the doctor and took her meds. My sister and I were too far away to visit as often as G did and see what she saw. And, frankly, our heads were too full of our professional responsibilities and our own struggles to see what see did. When she convinced us to support her in getting mom to move nearer her, there was a brief struggle about where mom should move – not that I wanted mom to move in with me nor was it an option. She hates NYC and I live in a tiny apartment. My other sister wanted mom to move in with her, but that also seemed impractical: sis led a nomadic SoCal lifestyle, wandering between Santa Monica, San Diego, and the suburbs of Los Angeles; and her work kept her on the road much of the time. Although mom wouldn’t admit it, she needed someone who would be around.
It was similar with my sister in law: she was the one who noticed that mom and dad weren’t doing so well on their own in Florida. She was the one who managed their healthcare from afar, advocated for them to live with her, who purchased and moved to a larger house with an in-law apartment. She was the one who led the charge to get them to move. Again, it wasn’t an option for them to move to NYC, nor would they have been happy here. And my other SIL’s house was too vertical for their elderly knees. it was a huge job to move them – one you can read about here – but eventually we made it happen and they settled in about 2 years ago.
Here’s my first lesson about caregiving for an older relative: when you realize that it needs to happen, you are often focused on the urgency of the situation and you don’t realize how much this is going to take out of you personally. You often have to persuade them to let you in or, if you have been blind to how bad it’s gotten, have to pick up mid-stream when they end up in the hospital. By the time you get them situated and get through the immediate crisis, you’re deep in the middle of it, and the rest of the family has gotten sucked back to the drama of their daily lives, and become blind to your situation.
Advice #1: Have a plan before you end up in the middle of the situation.
As your parents get older, it’s time for the kids to sit down and hash out, who will take care of mom and dad when they need help? Where will they go? Beyond that, how will your siblings help out? Have the conversation way earlier than you think you need to have it – your parents’ old age will sneak up on you. Map it out, put it in writing; if necessary, bring in an outside party who can walk you through the process. Everyone can give in their own way: my husband isn’t good at the medical care, but he Skypes with his parents daily for an hour, takes his mom through PT exercises, and draws his dad out about his fears and worries, and counsels him. Other siblings may be better at weeding through the legal or financial maze of caring for older people.
This is also the time to map out how often siblings will come to spell the primary caregiver and what that looks like. If they’re local, is it spending one evening a week with the folks? Is it spending Sundays with mom, with so the primary and her family can spend uninterrupted time together? Is it coming in 1 week a quarter or taking turns covering long weekends?
You may think to yourself: I don’t know how to do this. I was talking to a friend the other day about this: for many of us, learning to take care of an elderly person is like being a new parent. If you’re a parent, remember what it was like that first week at home, how amateur and unready you felt. You can take all the parenting classes available, but you’re still on your own. You have to learn on the job. It’s the same with caring for an elderly parent. You’re often groping your way though it blindly, finding things that work. And then Covid will hit and you’ll have to figure out how to do it backwards, in heels. And you do: but only if you commit to the idea, which is why it’s important to plan ahead.
Map out what you can, and then be ready to pivot.
Advice #2: Schedule Regular Status Meeting.
This is going to sound weird, but you need to plan a regular status meeting with your siblings. Get it on the calendar: the first Monday of the month (or whatever) from 7-9 pm, send out invitations and reminders. (Apps like Zoom can help with this.) Agree on topics and put together an agenda. Even if you talk to your siblings regularly, it’s helpful to have a monthly meeting where you focus more formally on these topics. What’s working, what’s not working?
I’m thinking of this like a project status report: what happened since the last time we talked, what are priorities now; what progress did we make on the action items we agreed to last time; what risks are we worrying about and how will we mitigate them; do we need to spend money on something not in the budget? How is the team doing from a bandwidth and morale perspective? What messages do we need to agree to reinforce as we communicate with the folks, with other members of the family?
Having a regular status meeting ensures that you are discussing the topics that need to be discussed. If you wait until you need the meeting, it’s probably too late, and you’ll be dropping the frog into the boiling water instead of raising the temperature gradually.
Advice #3: Communicate Calmly
Family caregivers are under a lot of stress. In 2002, the American Journal of Public Health reported that women who take care of elderly parents were twice as likely to suffer from depression or anxiety non-caregivers. As you can imagine, these symptoms make it challenging for family caregivers to ask for help.
And when they do, it often comes out as a cry for help: passionate, emotional, and demanding. It can turn into long emails with, because they come out of nowhere, seemingly unreasonable requests – for the things that siblings may have been more amenable to, if they had been made partners in the decision before the situation became urgent for the caregiver’s mental and emotional health.
Conversations that should have been negotiations become demands. Topics that could have been broached collaboratively through conversation, become long emails full of strictures. Cries for help sound like accusations: you’re not helping!
It’s really hard to communicate effectively when you are burnt out and at wits end. And it’s really hard, when you are the recipient of one of these cries to respond as if you are not being attacked.
The tone of these desperately cast lifelines often make you want to dig in your heels. After discussing his sister’s email, my husband and I talked about yes, driving 5 hours each week to spend a weekend a month with my parents in-law would cost us money and time, but a) work from home makes it easier for my husband to spend a whole week with them instead which makes it more realistic; and b) when my grandmother had a stroke and my mom was out of the country, I flew to Florida every month for a year to spend time with my grandmother and – just as importantly – with my grandfather. It took a lot out of me but I don’t regret it and, in retrospect, I’m so glad that I did it. That is time with them, that I won’t get back, and I still remember my grandfather’s arms around me and his voice, husky with tears, telling me how much he was going to miss me when I wasn’t there. So much a better memory than what dementia turned him into later, when he stopped being so easy to love.
Looked at it in that light, the other requests in the email didn’t seem unreasonable. Yes, some of them seem challenging because we’re not local and we’re not seeing what my SIL is seeing. But, once my husband is there more often, he’ll be able to recognize solutions, and will have earned the right to suggest solutions that the primary caregiver can’t see because she’s so close to the situation.
Taking care of elderly family members has to be a family solution. Yes, you’re up for a promotion and have a fractious teenager of your own, or are looking for a new house or are getting married or are on a job search or have health problems or don’t agree with the decisions that the primary caregiver is making and why do they have to be so damned grouchy all the time – it can’t possibly be good for mom and you’re tired of hearing of it. Don’t they know you have problems, too?
Put that aside. Remember you love them and that you love this person that they are caring for.
If you view their complaints as cries for help, it becomes a little easier to give.