Photograph by Patrick Moore | sxc.hu
The “sandwich generation” moniker might be a little stale, but it’s growing more and more apt, as people live well into their 90s. Their kids are retired, and never counted on this kind of responsibility in their golden years. And then there are those in younger middle age, with parents developing dementia and children needing the same level of attention on the other side of the sandwich.
Here’s advice from four people: Rose Marie Meyer, who made her own choice to go into assisted living and has watched others make a far bumpier transition; Patience Schock, who brought her mother, with early Alzheimer’s, to live with her young family for five years; and a St. Louis couple who prefer not to be named—we’ll call them Mary and John Smith—because they are so delicately balancing care of four elderly relatives, three of them in their 90s and all four in denial about the aging process.
1. “You’ve gotta do the right thing. My parents were totally independent—and suddenly my dad died, and my mom became ill,” says Mary Smith. “My siblings were all unable to help [due to geography, circumstances, fear], so I took a leave of absence. My mother is extremely demanding—emotionally and physically. She’s in a lot of pain.” Mary also helps care for another relative, and her husband, John, takes care for his parents, too, so they’re visiting, meeting practical needs, handling finances and maintenance for all four.
2. Be present. “When my mother came to live with us, I sort of thought that I was saving her,” Schock admits. “In retrospect, I wish that I had been more present to her. I expected her to just slip into our life, and even though she was willing, that wasn’t fair. I wish I’d listened a little bit more to her ideas.”
3. Find ways to give back a little control. “I also wish I’d given my mother some jobs,” Schock says. “‘This is your contribution to the household.’ I had young kids, and you know women, we think we have to do everything ourselves. She would come out and help me with things, but I wish I’d given her a little fiefdom. That would have been more respectful, and it would have let her feel useful.
4. Don’t contradict craziness. After a couple years of denial, Schock finally reached enough acceptance to work within her mother’s reality. Then, when her mother exclaimed, “I don’t want mice to eat my head first!” Schock replied calmly, “‘Mom, you’re going to be cremated, and mice don’t like ash, so you’re probably OK.’” Relief flooded her mother’s face. “Going with the flow, meeting her where she is, has brought me—and her—a lot of peace.”
5. Stop expecting death. Mary’s mother has been “at heaven’s door” at least three times already; that “hour of need” has lasted eight years. You can’t stay in that hypervigilant state, expecting the end at any moment.
6. Be at ease with talk of death. Schock’s mother, whose Alzheimer’s has progressed, will say things like, “I have to go to the dentist before I die.” Now, instead of rushing to soften or contradict, Schock says, “OK, I’ll make the appointment, and in the meantime let me brush and floss your teeth.”
7. Take a deep breath. “We’re totally worn out,” admits Mary, “but every day I wake up and pray to have endurance—and not resentment. My sibs are great, they always ask how things are and tell me they owe me. But they can’t know what it’s like, and if I tell them all the details, I feel like I’m just ragging, because they can’t do anything about it.”
8. Match the personality to the place. “My mother’s very private, almost reclusive, and in a lot of pain,” says Mary. “I knew she’d need a private room and the option to have dinner in her room.” Meyer, on the other hand, judged her future home by the people who lived and worked there; she knew she wanted lively interaction.
9. Accept what you can’t fix. “The hardest is when I leave my mother and have to drive home,” Mary says. “I leave the radio off, because I’m thinking the whole time, ‘How can I make this better?’ And I can’t.” Schock wishes she’d accepted her mother’s new limitations from the start, “said, ‘I love you and this is what we’ve got,’ instead of insisting, or wishing, that she was something other than what she was, or trying to save her. Love her where she is. We all think there’s something we can do, and in some of the biggest issues in our lives, the most graceful thing we can do is just accept it.”
10. If you’re old, don’t deny it. “Our biggest problem is their refusal to acknowledge that they are old,” Mary admits. Meyer wasn’t going to get caught in that trap; she settled her affairs and gave away just about everything she owned while she was still physically active and thinking clearly. Now she hears horror stories about friends whose kids took them “out to breakfast” and brought them “home” to a nursing home, having made all the arrangements secretly in advance. “I thank God every day that I was able to pick the place myself; if I don’t like it, it’s my own damn fault.”
11. Simplify. John took his parents’ more complex investments and simplified them, and he documents every change or expenditure carefully. He also keeps everything around their home as simple and uncomplicated as possible. When Meyer was dismantling her household, she told her children to come put sticky notes on everything they wanted, and then she found somebody who’d take all the rest away, for free.
12. Pay attention. Both Mary Smith and Patience Schock finally realized that caring for their parents was a way for them to learn a lot more about how they approached the world—and use the cues to become less controlling, more able to listen and go with the flow. “I learned to pay attention to what she was doing that bothered me and figure out why it bothered me so much,” says Schock, adding ruefully, “Of course, it’s difficult to have that conversation with yourself when you’re in the stream and coming toward the waterfall.”
13. Avoid sounding condescending. Meyer hears visitors scolding their parents all the time: “Mom, you can’t do that, you know that” and countless other well-intended remarks brittle with irritation or scorn. Mary and John carefully edit what they say to avoid any hint that someone is a burden or incompetent.
14. Don’t assume inability. Meyer had to have a knee replacement after jitterbugging at a neighbor’s wedding. She went from the hospital to a rehab institute—but after they tied a bib around her neck for dinner, she resolved to leave the next morning. They called her son three times to see if his mother would be OK on her own. Finally he said, “You’d better let her go or she’ll be running that place!”
15. Find ways to remember life outside a nursing home. Keep connections; if you’re the one living there, stay in touch with friends and find ways to go out in the world or at least stay abreast of current events, and do meaningful things—not just busywork—as long as you can. If you’re caring for a parent in a nursing home, bring stamps and stationery, a laptop, or a cellphone; bring their friends to see them; arrange outings, not just visits; find news that will spark interest.
16. Listen. Mary’s found that “Yes, Mother” goes a long way, just as it did in the teenage years. “My mother has a bit of elderly onset dementia, and it’s very important that I let her know I believe her, no matter what she says. Me arguing makes it that much more frustrating for her.”
17. Keep a sense of humor. Meyer lives in a residence where a retired doctor is so contrarian, he turns left out of the dining room and pushes his walker through incoming traffic rather than turn right into an empty hallway. “We call it the Walker Wars,” she chuckles. “And the electric scooters run into each other!”
18. Enjoy your role. “Your parents lose confidence that they can do things, and difficult things confuse them, so they think you’re a genius if you can figure out the TV!” says John, who recently divined the cause of a power outage by pointing out seven space heaters running simultaneously. “Never a dull moment!”
19. Use experts. Some people make an anonymous report to the Department of Motor Vehicles; Schock had a social worker from Barnes go out and evaluate her mother’s driving. “We also enlisted a third party to do evaluations of various residential places, when the time came,” she recalls. “People respect an outside authority.” (And then they can’t say “You put me here!” if they hate it!)
20. Expect change. “I came up with all sorts of systems to make things easier,” Schock says, “but every time I thought I had it down, it was a slippery slope; before you knew it, it wasn’t working anymore. Alzheimer’s becomes more and more of an unpatterned disconnect.”
21. Figure out the right rhythm for visiting. “There are two kinds of children: Those that come every day and are overbearing, call and call and call asking, ‘Are you OK?’—and those that never come; as long as they pay the rent for their parents, they feel like they are doing it all,” Meyer remarks dryly. Pay attention to your parent’s schedule; after a busy day, you might not need to visit the next day. But do plan to be there a while when you go: Often they treasure the company and are reluctant for it to end. “Just engaging in conversation—they don’t have a lot of that,” John points out, “because changes in hearing and short-term memory make it frustrating.”
22. Keep track of everything. “I have my mom keep a running list of things that need to be done,” John says. “There’s always a toilet to plunge or a light bulb to change.” Same with codes and keys and PINs. “The other day I got a call from a relative: My mother had locked herself out and wondered if I knew the code to the garage. Of course I did,” he says. “You can’t forget any of this stuff; you’ve got to have it all at your fingertips.”
23. Chill. Once you have the logistics down pat, all that’s really needed is simple help and steady presence. “You widen their world a little bit,” says John. “It doesn’t take much to brighten their day. I think people stay away because they’re afraid they’ll have to do something really difficult or complicated; anybody can do this.
