Jen Olski with Wally and Toots

Jen knows now that when she first assumed the mantle of responsibility for her grandparents, she hadn’t fully anticipated the grinding hours and extreme difficulty of the job. Today, in the prime of her adult life, Jen is housebound and consumed by mundane chores practically 24/7, while her friends have drifted away to develop careers and families of their own. Yet despite admitting to a certain sadness at the life she is missing, Jen is resolutely proud of what she’s doing for her family. “I wouldn’t have it any other way,” she says.

My hat is off to Jen for her tremendous, courageous personal sacrifice. Here’s her story:

In 2010, Jen moved back from her home in Milwaukee to live with her parents in Neenah, WI. Blame it on the recession: Jen, a copywriter, had lost her job and her home had been foreclosed. The move back was supposed to be a temporary one. She merely needed to get herself reestablished.

It was shortly after moving back home that Jen and her parents realized Wally and Toots were in a bad way. They were having a hard time coping the basics of living on their own. “I was concerned, and began thinking about how I could make things easier for them,” Jen recalls.

Jen had always had a close relationship with her grandparents and said, “I hated the idea of putting them in a nursing home.”

Jen had watched her other (paternal) grandmother rapidly decline and pass away after being placed in an institution. The care had been indifferent at best, negligent at worst. “It broke my heart,” says Jen. “I swore that I would never let that happen to my family again.”

Jen thought long and hard and concluded that she could continue freelance writing from anywhere—so why not simply share living space with Wally and Toots? The two were still fairly independent. So, they could all be “just roommates,” and Jen would be around to help them if help was needed.  Meanwhile, each of them could go their own way most of the time, and perhaps share the occasional meal.

Jen and her parents quickly found an ideal location—a handicap-accessible condominium with the perfect layout and plenty of space. It seemed to have been made just for the three of them.

But things didn’t go according to plan. The weekend that Jen’s parents went to close on the house, her grandmother had a debilitating stroke. The original plan had been for Jen to move in first. It would be hers alone for six months or even longer until Wally and Toots felt fully ready to leave their old home.

But Toot’s stroke changed everything. And while she was in the hospital, Wally experienced a bad fall. He could no longer live alone. A week after his accident, the family moved Wally’s things into the new the condo.

It was ahead of schedule, but things were still under control. “It was easy when it was just my grandfather and I,” Jen remembers. “We had a great time together, and I would drive him back and forth to the nursing home to see my grandmother.”

When they brought Toots home from the nursing home in September, 2011, overnight Jen had fulltime responsibilities. “I really wasn’t going anywhere. I was knee-deep in being a caregiver,” she recalls.

To make matters worse, almost immediately after Toots moved in, Wally’s mobility began to decline dramatically. He is 91 and has congestive heart failure along with peripheral neuropathy that has significantly weakened his legs.

Toots, on the other hand, was bouncing back from her stroke physically, but her mind had begun to deteriorate.

Jen found herself doing all the housework and keeping track of two needy people. This included care and feeding, not to mention handling the multitude of medications, and sometimes wiping dirty bottoms. “It was not at all what I had expected.”

Jen is emphatic that, despite the difficulties, living with Wally and Toots is often fun. As they fell into routines, life became manageable and often enjoyable. For example, every morning after breakfast Jen and Wally play cribbage (best out of three wins). Toots is no longer capable of playing games, but in her own way, she makes it clear how much she loves Jen and appreciates what Jen is doing for her.

Still, one has to wonder, why did all the responsibility fall on Jen and not the other members of her family? It starts with her being single, with no kids and a flexible job. She has two younger brothers, but they both have families. Jen’s mother, Sharon, and father, Larry, are retired, live nearby and help out a lot, particularly with finances. (They refinanced their home so that they could buy the condo Jen and her grandparents live in.) “My parents are also my primary emotional support,” says Jen. They also help with transportation to doctors’ appointments, errands, and with meal prep.

As you probe a little deeper, it’s clear that part of the reason for Jen taking on so much responsibility was simply to show that she could handle it. “I needed to prove to my family that I was up for the job.”

What she didn’t tell others at first was that deep down she was feeling overwhelmed. She tried attending a caregiving group, only to find that she was the youngest attendee by at least twenty years. Most members were taking care of husbands or wives. “My situation just felt so different,” says Jen.

Early in 2012, things began to turn around. Jen finally realized that “doing it all alone” was madness. She didn’t have to prove that she was superwoman. In fact, she recalls, “Without some help, I felt like I was going to go crazy.” She took her grandfather for an appointment at VA hospital and met with the social worker there. To her surprise, Wally qualified for six hours of free respite care a week from a CNA (Certified Nursing Assistant) who comes to their home and performs any small tasks that Jen needs help with or simply entertains her grandfather.

Having six hours of freedom felt like winning the lottery. She confesses she at first didn’t even know what she would do with all that free time! “My gosh it’s really hard,” she says. “How do I fill even two hours when I haven’t had that for a year? It’s really kind of weird.”

She plans to start reading again and to reconnect to friends she has lost over the last year. She might even go to a movie! As she describes it, it’s as if she is re-entering society after a year in outer space.

When people hear Jen’s story, they tend to tell her what a wonderful person she is. This makes her feel uncomfortable. “Giving Wally and Toots the best life possible is really such an honor,” says Jen. “For all the heartache, I find immense joy in knowing that every day they live in a safe and healthy environment.”

“Every night they kiss each other three times and fall asleep holding hands,” Jen adds, saying, “I’d be so lucky if I had that some day.”

Steve Slon is the editorial director for The Saturday Evening Post. He is the former editor of AARP The Magazine.

Thinking about what had transpired on the phone, I began to mentally rewind previous conversations with Betsy – those that were meaningful or memorable, and some that were mundane and routine. What I noticed most was that our discussions are always based on the present; what is happening now and what is expected to happen in the not too distant future. Mentally alert, Betsy can have an informed and intelligent conversation about the pending Presidential elections, the state of the economy, Obamacare and its impact on future generations of insured and uninsured individuals, and the latest salacious gossip circulating around the Bridge Circle at her local country club. But if I ask her about experiences in the past, or require some sort of historical reference to remember or understand something that happed within our family, she becomes almost indignant in her refusal to “go there”.

I remember one conversation I was having with my father and Betsy a few months after my mother had passed. We were discussing a community project that my mother had been involved with, and unexpectedly Betsy said “…the program was really doing very well and then, well, your mother went away, and the project just fell apart.” It caught me so off guard that she would say that my mother “went away” rather than simply say “after she died”, but thinking about the way Betsy discusses things now, it sort of makes sense. Going away is a present tense action. It is something that you do that doesn’t carry the same final weight as dying.

Unlike my father, who spent the last year of his life in a long rendition of stories from my childhood, accurately accounting for each event and date with precision and perspective, Betsy chooses to live in the now and look to tomorrow. I don’t think she is showing signs of dementia or Alzheimers. I think Betsy is making a conscious choice to really be here now and to live her life with what is, rather than what was or what used to be. Perhaps that is what helps keep her going at the age of 92 – looking forward and not back, planning the garden for next year rather than reminiscing about the beauty of seasons past.

In the second part of the interview, which follows, Snow describes dementia’s devastating impact on each of the five senses. Grasping the nature of the decline of the brain is a vital part of understanding—and better managing—our relationships to those with diminished mental faculties.

Q: What is the most basic misconception about dementia?

Teepa Snow

A: That it is a failure of memory. In fact, dementia is brain failure, not memory failure. And it affects all five senses. We rely on our senses to process external information from the world around us. But with dementia, each of the senses is reduced. And, just as with congestive heart failure, or kidney failure, this brain failure is a matter of degree. It’s not an all or nothing thing.

Q: How can a person simulate the diminished senses for themself in order to become a better, more understanding, caregiver?

A: Let’s start with the sense of sight. Dementia causes people to lose part of their visual field. The brain can’t handle all of the data and they are less aware of peripheral vision. I recommend that caregivers put on binoculars and walk around the room. See how hard it is just doing that! Notice that you cannot see objects that are close to you, so if somebody touches you from the side, it will startle you.

Q: And for hearing?

A: People with dementia are hard of comprehending, not hard of hearing. So talking louder makes you sound angry, or it makes you sound like you are trying to be bossy. Here’s an example of what speech sounds like to a person with dementia: “Early in the … people are missing … out of four …. How long would … take before you … lost?”

Q: Sorry, could you repeat that? I didn’t catch the last part.

A: Yes, exactly! I left out every fourth word. The full statement is: “Early in the disease people are missing one out of four words. How long would it take before you were lost?” I have students write down what they want to say to somebody and then mark out every fourth word, and realize how hard it would be to keep track of a conversation if people only used words.

Q: How can the caregiver overcome this dilemma?

A: They can add visual cues to the words. So if they say, “do you want something to drink?” and do a drinking motion near their face—or hold up an actual drinking glass and pantomime drinking from it—then my brain goes, “Oh, drink! Yes, I’ll take something to drink.” So it doesn’t matter where I got it, through the visual or through the auditory. I got it! And so we can still communicate.

Q: How should caregivers combine sensory cues when beginning an interaction?

A: Get in front of the person at a distance so that they can see you and say, “Well hey,” or “Hello!” And spread your arms wide to indicate, “I want to hug you, is that ok?” You give them that visual cue, and the person will either open their arms and say, “Well, hey sweet heart!” and want to hug back. Or they might ask, “What are you doing here?” In which case, now you have your early warning of—uh, oh, not a good moment.

Q: What then?

A: She doesn’t know I’m her daughter and she’s not necessarily going to want a hug from this stranger who is approaching. Picking up on the cue, I’ll say, “Well hey, it’s Teepa.” And now I’ve given her an auditory signal to go with the visual. And she may say, “Teepa, you know I have a daughter named Teepa.” Now in that moment I’ve got a choice. I can go with the flow and say, “You do have a daughter named Teepa, yes!” Or I can say, “Mom, it’s me!” In which case, now I’ve made her wrong and me right. And now we have potential to fuss back and forth. The manner in which our interaction starts is very important.

Q: Is there another effective way to say hello?

A: The other way to greet is to put a hand up near your face and go, “Hi”, like you would if you saw somebody down the road whom you wanted to say hello to. And then offer your hand in a handshake. Because what you are saying there is, “Will you let me come in and will you let me touch you?” And if the person responds in any way, obviously they saw you and acknowledged you and now they are ready for your touch. So you are getting permission before you lay hands on someone. And once you lay hands, keep your hand in a position where it’s a palm touch, which people are much more comfortable with than a finger tip touch.

Q: How can we simulate what happens to the sense of touch?

A: With touch, I’ll have people put on binoculars again. Then I’ll try to guide the person quickly around the room. The reaction is, “Woh, woh, woh—don’t do that!” If you don’t feel stable on your feet and somebody starts moving your upper body, it’s really going to scare you and it’s going to make you angry because you feel like they are trying to hurt you. Remember to combine senses and only touch after a warning.

Q: What about smell?

A: Dementia causes people to lose protective smell. They don’t get the danger of smoke, for example. There’s not the warning, ding!, that goes off from the smell of smoke. They might try to light a match with the smell of propane in the air. Another smell they might not pick up on is spoiled food. So they put something in the refrigerator and because of the memory issue forget they’ve put it in there, and it’s in there for days. Then they pull it out and leave it on the counter for a couple hours because they forget and they go do other things. Then they find it and go, “oh, egg salad sandwich. That’ll be good.” So food poisoning is serious danger. Other smells that they may not pick up on are body odor, urine and feces. So, caregivers need to be a lot more tuned into danger signs when it comes to smell. In a friendly and non-condescending manner we need to present them with safe alternatives.

Q: Finally, how is taste affected?

A: They keep bitter the best, but sweet and salty tastes are reduced. They have to super-sweeten to get their sweet and they have to salt more to get the salt taste. Sweet and salt aren’t good things to have a lot of if you’re diabetic or when you’re hypertensive, but, because your taste buds are duller, you’re actually craving it more. And because you don’t have good impulse control, you’ll tend to overdo it.

Q: What’s the best way to handle these cravings.

A: Well, the common response is, “Mom, you’re putting too much sugar in there. You don’t need that much sugar in there!” Or, the patient may say to her daughter: “You can’t cook. This recipe tastes crappy. Why did you do that? I gave you a good recipe and you made it taste terrible.” And the daughter of course says, “Mom, it’s your recipe.” All this can lead to is an unproductive argument. In reality, there’s no need for an argument, if the caregiver understands that what is happening is not a battle over a recipe, but a radical change in the patient’s sense of taste. In many situations, we think that we are having a problem with each other, but in actuality—the brain is dying. Remember that.

This is Part Two of a two-part interview with Teepa Snow. Click here for the first part, in which Snow describes the most common mistakes caregivers make with dementia patients.

Steve Slon is the editorial director for The Saturday Evening Post. He is the former editor of AARP The Magazine.

Where do comments like this come from? Frustration? The subconscious desire to will our patient back to rational thought? When we slip and say something like that, the anxiety builds and often we are left with an explosion of a reaction that can take hours to recover from. If only we could have taken a deep breath, thought it through, and said something a little different.

Teepa Snow

I recently had the opportunity to speak with Teepa Snow, MS,  an occupational therapist specializing in dementia who has both an independent practice and clinical appointments with Duke University’s School of Nursing and UNC-Chapel Hill’s School of Medicine.

As we talked, I couldn’t help but think—if only my family and I had known some of her surprisingly simple and rational methods for coping with dementia patients, surely some of those interactions with my father during his long battle with Alzheimer’s would have been better—for him and for us. As frustrating as this disease is, there are indeed things to be learned which can allow us to care for the people we love in a more compassionate and understanding manner.

Q: Teepa, thank you for speaking with me. Let’s start with the “don’ts.” How do most people living with dementia NOT want to be treated?

A: What they hate the most is when people treat them as if they are stupid, because they are not stupid. It’s brain failure, not stupidity. When somebody has dementia they immediately pick up on when a caregiver starts acting bossy, or pushy, or “I’m right, you’re wrong.”

Q: Why is this such a common mistake?

A: Most family caregivers’ experience is having helped children develop skills. And so when someone is losing skills, rather than gaining them, there’s this real difficulty understanding what is going on. I—the patient with dementia, that is—am still “me.” I’m not turning into a child. So, it’s a real mistake to start thinking that you can treat me like I’m five years old and I’m going to go along with it.

Q: What are some other mistakes that caregivers make?

A: They ignore the early signs that something is happening. They try to make light of the situation when I make a mistake. And when I say something like, “I can’t,” it means I’m really struggling. It doesn’t help when the caregiver jokes, “Mom, what are you doing? Getting old or something?” The real problem is that the caregiver isn’t ready to hear the real problem, so it gets easy to push it under the rug and not do anything about it.

Q: What other communication blunders are most common?

A: Another issue is when family members talk in front of me like I’m not there. I can pick up on that stuff. Again, the point is, I’m not stupid. And no one likes to be treated as if they are stupid—whether they have dementia or not. But dementia removes some of the pre- frontal cortex control and so I am more likely to blow up or get angry, sad, or distressed when somebody treats me like this.

Q: Speaking of talking, I remember feeling extremely uncomfortable—at a loss for words, hurt, even a little angry—when my father would say something out of the blue. Once he said to my young son when we had come to visit him, “What are you doing here? Where are your parents?” And my wife and I were standing right behind him. What can you say to that?

A: The best technique for when they ask you a question and it sort of surprises you is, instead of answering the question, just repeat some of the words they give you. So if they startle you with, “Have you seen grandma lately?” —and let’s say, she’s passed away—you should take a deep breath and repeat back, “Oh you’re looking for grandma, yeah.”

Q: That’s to give me a chance to compose myself?

A: Right, it gives your brain a chance to catch up. And you might say, “Well now, did you need to ask her something or were you just looking for her?” And by doing that you can figure out what prompted the question, rather than trying to answer it. It allows you to learn more when the question seems odd to you without upsetting them.

Q: Anything more on the communication front?

A: Another good thing to do is to get into the habit of introducing ourselves by name and not by relationship. It gives us a chance to pick up on the idea that the person may or may not know that it’s us. So I might say, “Hey it’s Teepa,” as I walk in the house, rather than, “Hey mom!” “Mom” can be confusing, since it implies a relationship, and relationships are sometimes hard to grasp. Announcing yourself by name means she’ll be less likely to get confused and lash out with “What are you doing in my house?” It helps her to know who I am and connect dots without feeling stupid.

A: Caregivers commonly put their hands on the patient too much. An example that I use sometimes in my classes is—have you ever come out of the bathroom and you’ve forgotten to zip your zipper? Would you ever expect a good friend to walk up and try to zip your zipper? Of course not! I’d expect a good friend to say (whispering), “Teepa, I think you might have missed something.” When the family takes over too much, even for the most compassionate reasons, it becomes the I’m-the-boss-of-you kind of thing. While the patient may not be able to articulate his stress or shame, he can certainly feel it.

Q: What about distance caregiving for a relative with Alzheimer’s or dementia?

A: It’s really hard because often when you are a distance caregiver you come episodically and it’s hard for you to see what’s actually going on day-to-day. When you show up the patient’s brain gets excited. And when her brain gets excited she performs differently than she normally does. And so the people who are around all the time are saying, “she’s really having trouble. She’s gotten lost twice,” and you come—the drop-in visitor—and the patient stuns everyone by acting almost fine. For example, she might blurt out, “So how’s my grandson at Tulane doing? Is he still getting good grades?” And you’re like, “Wow, she’s really with it. What are they thinking?” When you’re not around on a regular basis, those short visits can be deceiving.

Q: What else?

A: When you come you do the parachute thing—where you try to jump in and fix everything at once because you have to leave again—you get into speed-demon time. And if there is anything that’s really not good for someone with dementia it’s trying to go too fast. And so, long-distance caregiving is probably one of the most stressful situations to be in.

Q: Some final principles?

A: Be respectful of space. Start each interaction with a smile and some friendliness. Don’t make assumptions that the person will remember her relationship with you or the things you’ve done together. Slow down a little bit. Give the person a chance to get connected to you and to want to be with you, rather than be forced to be with you. She’ll be more comfortable, and your life will be a lot easier.

Teepa Snow is an Occupational Therapist with 33 years of experience. She travels the country training and consulting for agencies, facilities, and families, sharing better methods of caring for those with dementia. For more information,  go to her website here.

This is part one of a Two Part interview with Teepa Snow. Click here for the continuation of this interview in which Snow breaks down the effects of dementia on the five senses.

Steve Slon is the editorial director for The Saturday Evening Post. He is the former editor of AARP The Magazine.

Last summer my 20-year marriage ended in divorce. Divorce is painful for everyone; the couple, the children, the friends, the relatives – everyone is impacted. But one segment of the family that can feel divorce most acutely are the elderly members who are not part of the daily grind.

Aunt Betsy lives 150 miles from me. We talk daily and see each other regularly. She is very much a part of my life, even though we don’t spend a lot of time in the same physical space. She knew my ex-husband for a long time, and as a couple we were regular participants in the events and mundane activities that made up her life. Betsy lives in a small town where everyone knows everyone else’s business. When you are 92 this kind of microscope living isn’t necessarily a bad thing, but when catastrophic events – like divorce – take place, living under a microscope can take it’s toll. When my life became uprooted, so did hers, by virtue of the fact that she depends on me for her care.

Along the bumpy and pot hole filled road of divorce, Betsy was my constant champion. She instinctively knew when to be empathetic and compassionate with my fragile or hyper sensitive emotions. She would interject valid observations as pertained to logistics, and she never once questioned my motives. She was like a mother to me. But she wasn’t in the house and on the scene on a day to day basis. Her physical environment never changed. Any negative energy that came her way came through the Internet or telephone, and once the computer was logged off or the phone call disconnected, there was relatively little evidence of the maelstrom brewing in her niece’s life.

In the past year, after the dust began to settle and I was able to be more empathetic and less judgemental of my ex-husband, I didn’t include Betsy in the healing process. She heard only the bad and dramatic for several years: “Can you believe what he said…?” “I am shocked that this happened…” “How am I going to fix this problem…?” …and so forth. She hasn’t really heard or seen the quiet acceptance of situations. I don’t call her up to report the baby steps on the path to rebuilding and reinventing a relationship that still exists, but in a completely different form. Which leaves Betsy in something of a vacuum when it comes to how to process her own emotions and concerns.

Additionally, the small community in which she resides knew my ex and me as both individuals as well as a couple. Sometimes it is simply gossip that people seek, other times it is out of genuine concern, but Betsy frequently has to field inquiries into how I am doing, how are the children, what is going on. It makes her uncomfortable and I think she gets confused as to just how much and what kind of information is worthy of distribution. She isn’t comfortable with difficult social situations, and perhaps feels disloyal to me making a statement as to my well being or not.

As we get older our ability to be nimble in challenging situations becomes diminished. We are all creatures of habit to some degree, and patterns that are put in place early on become harder to adjust. Betsy gets agitated when gift giving holidays and birthdays roll around. Instinctively she wants to acknowledge his birthday with a card or gift, but becomes confused as to what would be considered right action in a situation that she fundamentally doesn’t understand. She gave birthday greetings for over 20 years – should she continue or not? Even though my loyalties have shifted, hers shifted only by default because we are related, not because she was on the receiving end of egregious behavior.

Moreover, having heard only the dramatic and outrageous for a sustained period, her mind does not adapt as quickly to a modified and less volatile reality, which ends up frustrating both of us. She fed off my hostility, and now doesn’t understand my more passive and complacent attitude. I find myself getting annoyed that she still harbors resentment over something of which I have let go.

It might have been different if Betsy had been in closer physical proximity to us as we navigated the odyssey of divorce. Perhaps if she had been a physical, rather than a primarily auditory witness, to the unfolding of events she would have an easier time adapting to an evolving family structure.

I think to some degree we, as caregivers, want to shelter our elderly charges from the reality of the less pleasant experiences of our lives. There were many days that I felt guilty for including Betsy in my drama, and yet in not doing so I was excluding her from something that was profoundly important. My not knowing how to include her in a safe way that respects her boundaries is akin to her not knowing if she should send a birthday card to my ex husband.

If the opportunity to rewind was available I think I would have managed my flow of information to Betsy in a more controlled and sensitive way. So wrapped up in my own feelings I didn’t really consider the impact this kind of disruption would have on her so late in life. Maybe that’s what I owe her now, while she is still part of my life – to help her understand how the dynamics have changed and lend her support to contribute to it in a way that is comfortable and acceptable to her.

I absolutely loved her. Not loved her like she was helpful with my kids and she took us out for good meals and remembered my birthday. I loved her the way you love someone who’s completely enmeshed in your heart and soul, who is there for you and your family and your friends at all times, who welcomes everyone into her home because she sincerely enjoys their company, and who invests the time and energy it takes to be deeply involved in your life.

No one could possibly describe her as easygoing. She was demanding and exacting and inserted herself into the lives of others, often overstepping her bounds. But her magic was that every overstep was steeped in selfless love, a firm belief that we were capable of excellence and a clear commitment to support us without question at all times. From the first time I walked up the steps of her house, she had my back, and she never let me down in 24 years.

A week before Christmas, the ovarian cancer she’d been fighting for over a year created an inoperable intestinal blockage. The doctors told her that she was at the end.

We were determined to let her die at home. In fact, there was no real discussion about whether or not we would — only a discussion on the logistics of “how.” She got rolled into her living room at noon on Christmas Eve. At 9 pm that night, the 22 members of her immediate family and nine “family equivalents” filed in quietly to do the traditional candle-lit reading of the final stave of Dicken’s Christmas Carol, followed by the 15 children reading The Night Before Christmas one stanza at a time, all of us in the living room that had welcomed us and supported us and entertained us for as long as we could remember.

And there she stayed for three more months, in the living room she built, originally to house the books about art that she cherished and to accommodate some beautiful furniture her father had given her, and, later, to provide a little more room for her growing family.

She built it with large glass doors and a floating glass alcove overlooking the garden that existed only in her imagination at the time. It came to fruition as she lovingly hand-picked each plant and eradicated the bamboo jungle that existed in the ravine outside. Over 40 years, she transformed the large yard into one of the most celebrated shade gardens on the East Coast, a lush patchwork of leaf textures and tones surrounding a glorious swimming pool.

It was there that she hosted hundreds of friends, neighbors, fellow parents and children’s friends for everything from the prom after-after party to little league pool parties for her grandchildren, to philosophical gatherings later written about by famous columnists from The New Yorker.

It was there that she bellowed “NO BALLS ON THE FIRST FLOOR!” at the top of her lungs, first to her sons, then to her children’s friends and then to her grandchildren.

It was there that she started the spirited charades tradition with her children and her children’s friends — hours of pantomimes enveloped in hysterical laughter, the best of the bunch being the evening when the men challenged the women to a match. We accepted, and rewarded the challenge by assigning them Are You There, God? It’s Me, Margaret. Needless to say, the women prevailed.

It was there that she fell down the stairs and sustained a back injury so severe that she could barely leave her bedroom for a year. And it was there that the overwhelming love of and for her children inspired her to spend hours in physical therapy so that she could get well again. And she did.

In that house she raised four smashing children and raised many of their friends as well. She started organizations critical to the well being of her city and wrapped grandchildren in her arms when they bumped their heads. It was there that she lovingly buttered their toast, taking extra time to ensure that the butter spread all the way to the outer edges and that there was plenty of it. It was there that she cooked the Christmas “gooses,” year after year, never once losing patience with the twelve grandchildren milling around under foot.

It was there that she hosted her annual garden party, last year’s being the most joyous because it had been so unclear whether she’d be alive at all. With stereotypical post-chemo short hair, she welcomed hundreds for the last time, having invited them to join her to celebrate her family, the garden and “life in general.”

And so it was naturally there that she came to end the vibrant life that had created and celebrated so many other vibrant lives. She couldn’t leave her bed at all during the final months, but the city came to her, one person at a time, to say goodbye in the room where they’d said so many hellos. And spring came early this year, as if the flowers felt the race against time to show her how much they appreciated the beauty she’d allowed them to create. On the good days, she’d get wheeled outside to see it from her bed, but every day somebody brought the spring in to her in a vase — first the forsythia and crocuses, then the cherry and pear trees and finally, the week that she died, her over-the-top spectacular tulips.

And then, goodbye. She left the way she had lived — with courage, conviction, loyalty, endless love and high standards — in the place where she’d brought it all to life for the rest of us. Home.

When my parents retired to New Hampshire in their mid 60s, my father made a point of keeping a daily weather journal, the point of which, according to my mother, was to prove to the IRS if ever questioned, that despite still owning property in Massachusetts, they were in fact New Hampshire residents, and had spent more than the requisite number of days in the Granite State to allow them to be taxed at a lower rate.

His initial entries included the temperature upon rising, notes about rain or snow or sunshine, wind, if any, etc., and perhaps a comment about the coming day forecast. I noticed as the weeks and months and even years wore on that the journal continued, and that conversations over cocktails or at the dinner table began to focus on the actual weather itself. Granted, New England is legendary for it’s weather, and the proximity of their house to Mt. Washington, home to some of the most extreme weather on the planet provided great fodder, but there was something more deliberate and intricate about Dad’s weather journal and his ensuing conversations.

As we age things go wrong with our bodies when we least expect it. We tear ligaments or develop arthritis or get diagnosed with more catastrophic illnesses, seemingly through no fault of our own. Sometimes it just happens, and we transition from a reasonably healthy being to one plagued by maladies as quickly and unpredictably as the weather changes.

The weather is an easy and neutral topic. It is what it is – we have no control over the weather (debates about global warming not withstanding,) and you don’t have to pick sides or be informed about issues the way you would in a political debate. On the other hand, discussing one’s health is a very personal and intimate topic. By revealing the details of your health you are exposing something akin to your own vulnerability. Our changing health and wellness, seemingly beyond our control, can be as overwhelming as the arrival of an intense snowstorm or hurricane; as frightening as an earthquake or a tornado.

I think my father found a sense of peace and stability in recording the weather in his journal. It was real, tangible, and served as a marker for other unpredictable things in his life, like his diminishing hearing or his crippling arthritis. Writing about the weather and talking about the weather gave him an outlet in which he could channel his incredulity at what was going on in his internal and external environment. And I think in some ways Betsy’s daily mention of the weather is the same. Noticing what is going on around her is a check in of sorts. Marking the weather she marks her personal changes – feeling tired, feeling confused, feeling better – and in noting the weather it anchors her routine and reminds her to stay focused in the moment.

Moreover, I think the weather provides a foundation or base camp from which they can pace their days. To some degree we all take comfort in our habits and patterns, but in this fast paced and uncertain world, a regular routine is like an old friend to an elderly person. It is the marker that can be used to measure any deviation – a delayed trip to the market because of snow the previous evening – or the consistency of knowing that book club or bridge group will take place, uninterrupted, and as scheduled.

Ironically, Betsy’s daily pronouncements about the weather have become for me a litmus test as to her mental and physical condition. As long as she tells me what’s going on outside, I know everything is OK on the inside.

Imagine having a robot around the house that can lift a frail elder if they fall when you are not around. Now visualize automated dresser drawers that can literally talk and guide a dementia patient through the complex—and often stressful—act of getting dressed in the morning. You are seeing what could very well be the future of caregiving.

Diane F. Mahoney, PhD, Professor of Geriatric Nursing Research at MGH Institute and her team were among the first to study wireless monitoring technologies for caregiving. Frustrated with “alert-type” bracelets (also known as PERS devices)  that patients frequently fail to activate, she became interested in high-tech devices that not only monitor patients in the home, but can provide an assist to the harried caregiver. Mahoney’s research is at the bleeding edge of caregiving technology. I spoke with her recently to find out what’s coming next.

Q: Robots in the home? What sparked this concept?

A: I got the idea when I heard that people are falling and not getting up, and they are not pushing the alert button on their alert bracelet or calling for an ambulance. I thought, wouldn’t it be nice if we had some kind of personal lifting device for elders?

Q: Is it feasible?

A: The concept already exists. The military has some neat robotic devices that they use to go into the battlefield and lift downed soldiers and remove them under fire. So I wound up getting involved as a consultant to a couple of robotic companies that are indeed working on devices that can move and lift a person. I am helping companies to develop a product for in-home use, for a future version when the technology becomes affordable.

Q: So, robots in the house? I guess, to appeal to baby boomers, you just put a BMW label on the thing.

A: [Laughs] Right!  I’m a baby-boomer and, I’ll tell you, 20 years from now, I’d like a little robot running around the house.

Q: Yes definitely, me too. So, will we start seeing robots soon?

A: iRobot already has the Roomba, a robotic vacuum device, and they are very entrepreneurial. There are also other companies around that are working on components of robotics for in-home use. So in the near future they could merge together, combine developments, and solve potential safety issues. I’m sure these companies will be able to overcome the technology challenges in the next decade. And wouldn’t that just be great?

Q: A lot of your work has focused not just on the patient, but on the caregiver’s need for respite, for just a small break during their 24-hour workday. Can you tell us a little about that?

A: After years spent listening to Alzheimer’s caregivers talk about their needs, one of the themes that kept coming up was, “if only I had 10 minutes to myself, if I could just breathe or go to the restroom without my husband or wife banging on the door!” So I designed an automated telephone call; I called it a respite call. To make it effective, we interviewed the caregiver for their patient’s favorite hobbies, foods, smells, songs, and so forth. The phone call was all computerized, and the caregiver could call in anytime and put their patient on the phone—even at two in the morning when they were being driven crazy. And by calling in and putting in the password the conversation would come up and the voice on the phone would say, “Oh, hello Harry. Oh, it’s so nice to talk with you now. You know, I understand you really like brownies…” And of course, for someone else, it could be chocolate candy.

Q: Would this keep them busy for the magic 10 minutes?

A: Actually I designed it to be 28 minutes long and it was able to repeat once. So we put it out there; I had no idea if this would work or not. Many people don’t let their person with dementia use the phone anymore. But others tried it and it gave people more than their 10-minute break. They got a 28-minute break. Some of them went around twice, for a total of 56 minutes.

Q: I bet caregivers were pleased with that.

A: Yes. One caregiver said to me, “The day is very long. And I need a tool box. And in my tool box I need a whole bunch of things to keep him occupied. This is a very important tool in the box.”

Q: What other tools have you developed?

A: I’m starting another project with a colleague who has been using motion sensor technology for children with autism. We just got funded a few months ago by the Alzheimer’s Association to build what I call DRESS—Development of a Responsive Emotive Sensing System. The project grew out of our observation that, for people with dementia, getting dressed is often a trigger activity for becoming extremely upset. The person gets in the drawer and rummages and gets stuck and keeps on rummaging.

Q: What is the solution?

A: For the prototype we are going to put iPhones on each drawer. So if they get stuck in one drawer too long, the iPhone on the next drawer they should go to will turn green and flash, and if they open it, fine. If they don’t open it, the phone will speak, and actually say “Open this next.” It will continue with verbal cues until they perform the requested activity.

Q: This is not just to help them get dressed, right? Again, this is partly about caregiver respite.

A: Yes, even if we can’t get them fully dressed, the caregiver can use this as a safe activity. We might be able to convert what would have been an annoyance into a distracting respite activity for 20 or 30 minutes. Worst case, the caregiver gets a break; best case, the person actually gets dressed alone.

Q:  Either way, sounds like a victory.

A: Certainly! The respite part is central. Caregivers themselves are often so focused on their loved ones that they often don’t take the time to take care of themselves. I’m in this field because I really appreciate the role caregivers play. They make such a vital contribution that sometimes I don’t think our society fully appreciates.

Steve Slon is the editorial director for The Saturday Evening Post. He is the former editor of AARP The Magazine.

I was having dinner with some friends the other night and the subject of fear came up. All of us at the table were experiencing some sort of life event: the death of a parent, divorce, re-marriage, selling a home, starting a business, children leaving for college. We were discussing how fear plays a role in how we approach decision making and how it impacts – for better or worse – the outcome of the situation. Reflecting on our conversation I couldn’t help but think about my parents and how much of a role fear may have played in their decisions late in life.

In the last few years of her life my mother suffered a series of falls that resulted in broken shoulders, elbows, wrists, arms, and finally her hip. My father was a doctor and despite being older than my mother and rather “worn down” himself, he was still capable of taking care of her when she was incapacitated and making sure that the house ran smoothly. The broken hip, though, seemed to change all that. She required a great deal more assistance than she had before, and I could see the toll that her injury and recovery was taking on them as a couple. Following her surgery my mother was placed in a nursing home where she was supposed to recuperate. While she was there my father stayed at my house, and one night we had a long conversation about their future. He agreed that moving to an assisted living facility was probably the best thing to do, and that it would provide a sense of security for everyone, especially me, if they were in an environment that could handle and respond quickly in the event of an emergency. He promised that he would speak to Mom about “our” plan the next day and we would then be able to work out the where, whens and whys of a new place to live.

I’m not sure exactly what happened during their conversation, but they never moved out of their home. Later that week, against doctor’s orders, my mother discharged herself from the nursing care facility, had my father drive her back to their residence 150 miles away, and never spoke of assisted living again. I think she was afraid of leaving her home, and in so doing, admitting that she was less able to take care of herself and maintain her independence. For another year they fumbled around the house, making do, doing less, insisting they were fine and didn’t need any help. Then there was another fall, this time in the bathroom, and not long after that my mother passed away.

My father chose to remain in his home after Mom was gone. His only ailment was loneliness, yet I think even for him there was a fear of admitting defeat if he decided to move to a smaller place or one that offered the care that he might need. Maybe it was pride that kept him there, or a feeling of being closer to his wife if he remained in her environment. Whatever it was, he moved through the balance of his days in a bit of a trance, uninspired by his surroundings and the people with whom he interacted, until one day his heart stopped beating and he joined his wife.

I suppose it is presumptuous of me to assume that it was fear that kept my parents from radically altering their lives and moving out of the home they had lived in for 40 years. But I think about the changes that my friends and I are dealing with, and each one of us acknowledges that we are afraid of change, or some aspect of it. Our lives will be different and there is a discomfort in the unknown. Will we be the same person? Will we have the same friends and patterns once these changes come to pass? I can only image now what it must have been like for my parents to think about a significant lifestyle change in their eighties. Thinking about it now I feel a great sense of compassion for them, and wish that I had been better able to communicate my concern for them in a more empathetic and less pragmatic and selfish way.

How old do you have to be to be considered a “grownup”? For some people, it’s 18 or 21; for others, it’s not a precise age, but the distinction of becoming finally self sufficient, for example, having one’s own place to live and a good job. Of course, for many of us, in the eyes of our parents, the answer is: never.

Lana Maxwell is 52 and lives in Philadelphia. Her parents, Sam and Ethel, are both in their 80s, and live in New York City.

Sam and Ethel are both highly educated retired teachers, and, as far as they’re concerned, perfectly self-sufficient. Lana, on the other hand, has always been the baby of the family—someone who needed a lot of help. And, it’s true, she has had some struggles in her life, and her parents always took care of her when she was in a jam.

Old history, to Lana. But to her parents, the impression persists.

So, the problem for Lana became: how could she make the transition from being the child in the family to the responsible party—particularly when she had a history of being the needy one?

It goes without saying that caregiving for parents who live two hours away is a challenge. Combine this distance dilemma with aging parents who swear they’re just fine without you, who don’t even have faith in your ability to manage as an adult, and caregiving can become an exasperating battle.

It was six years ago, during one of her visits to New York, when Lana first observed that her parents were starting to grow feeble. But when she tried to offer to help, they would have none of it. She suggested extending her visit from a planned 10 days to 20. There were things to be done; the apartment was a mess; there were forms to fill out; medications to be purchased, and more. To demonstrate her concern (and her maturity), Lana wrote out a list of questions for her parents’ doctors. (Names have been changed for reasons of privacy.)

Her father rejected her help outright—both because he resented the implication that he and his wife were incapable of handling their own medical affairs, and also because he was concerned the questions might anger their doctor. “We don’t want to offend him,” he explained.

Lana persisted. She was told to go home. She refused.

Ethel objected whenever Lana went in the kitchen. She did not want Lana cooking meals and taking over her household duties. Sam also said he wanted her to go home–for her own good: he said he did not want Lana to leave behind her life in Philadelphia.

Over her parents’ objections, Lana stayed. It was only a few days later that Sam, a diabetic, suddenly became quite ill. He’d been chronically exhausted and irritable, but one night when Lana brought him dinner, he fell asleep while she was talking to him. She couldn’t wake him.

Frightened, Lana asked her mother, “What’s wrong? Has this ever happened before?”

“Oh just leave him. He’ll be fine,” Ethel replied.

“Who is his doctor?” Asked Lana. “I think dad is having a serious problem.”

Families aren’t always rational, as we well know. But Ethel, instead of being thankful for Lana’s concern, was infuriated. “I don’t want to hear that my husband is having some kind of episode. I take good care of him. Don’t you ever say that I don’t take good care of my husband,” she said to her daughter.

“She made it clear she didn’t want my help,” says Lana.

Lana dug in her heels. She pulled out her laptop and began searching for information online. It wasn’t long before she stumbled across a video on the website of a major drugstore chain detailing precisely the symptoms her father was having. Lana recalls, “I had just recently got a router working in their house so I was capable of bringing the laptop and putting it in my mother’s lap. I pushed the button and left the room and let her watch it on her own.”

It was clear from the video that her father, a diabetic, was having a severe hypoglycemic reaction due to overmedication: “At the end of the video, the narrator says, if you have these symptoms, call 911,” Lana recalls. “In fact, ‘911’ was flashing it huge red letters on the screen,”

Lana walked back into the room and declared: “We are going to the hospital now!”

That was the turning point. Ethel could no longer ignore her daughter’s pleas. At the hospital, Sam’s medication was adjusted. He spent a few days under observation, and then was discharged to his home. He and Ethel live there to this day.

Just as important, something changed in the way Sam and Ethel view their daughter—as someone they can rely on. While Lana still lives in Philadelphia, she visits more frequently and her visits are eagerly welcomed.

While the playing of the video—or more precisely the adult capability Lana demonstrated by being able to find good information about Sam’s condition online—may have changed the way her parents viewed her, Lana remembers the years of persistence it took to get to point where her parents accepted her as their caregiver:  “This is a long war for us, with campaigns of shutting down, campaigns of assertion to aggression; but it has always been a war of love!” says Lana.

Steve Slon is the editorial director for The Saturday Evening Post. He is the former editor of AARP The Magazine.