What It's Like to Be Old
INTERESTING STUFF – 18 May 2019

Making a Misery of Old Age?

In response to Wednesday's post about MIT's AGNES suit, I was startled to find this email in my inbox:

”I think people make too much misery out of old age. My eyes are dimming and so are my ears, my steps are slow. My breath is short and my nights long. My husband of 62 years died in Jan.

“Nevertheless I see friends daily, go to weekly workshops, write a newspaper column, just went to NYC with friends and visited family in NJ. I see lots of movies and read the NYTimes and a cascade of books. At 86 I don't expect miracles, but for now I'm having a fine time.”

How lucky that you apparently do not have any major impediments to being as active as you want. That is not true for all old people nor do they bring it on themselves, as you appear to imply. According to the U.S. National Council on Aging,

”...about 80 percent of older adults have at least one chronic disease and 68 percent have at least two. In our survey, nearly one in two seniors reported living with two or more chronic conditions...

”From making it difficult to perform daily tasks such as walking up steps or bathing, to causing significant physical, emotional, and financial strain, these diseases can take an extensive toll, particularly among seniors. What’s more, without proper care, chronic illness can reduce quality of life, and keep seniors from maintaining the level of independence they desire.”

God knows I've said it often enough here over 15 years but one more time seems necessary: we age at entirely different rates. Sometimes a 50-year-old needs full-time care and other times, a 90-year-old is functioning as well as we expect a healthy 50-year-old to do.

My surprise at reading this email wasn't done. Checking the comments on the blog, I saw that about half a dozen dismissed the AGNES suit out of hand:

”I have a strong negative reaction to these types of suits,” wrote James Cotter. “They suggest that ALL older persons experience all of these decrements at one time. They do not reflect the experience of growing older, especially for those who have maintained decent health and mobility.”

Let's stop right there with “...those who have maintained decent health and mobility.” What about the people who haven't? Does anyone here think it is the patient's fault she was diagnosed with MS at age 31? And no, AGNES does not suggest that all old people suffer exactly the same experiences.

”I think these toys have some utility,” wrote Harold, “but they will not provide insight into what it's like to wake up with these limitations permanently installed and likely to become more pronounced and an awareness that this is the best it's ever going to be.”

First, AGNES is not a toy. For well more than a decade, MIT has used the suit to help people design products and services that help elders engage with the world more easily.

As to understanding that limitations are often permanent, we can't ask people to wear the suit for a week or a month or more. But a day will do it quite well in increasing understanding of elders.

Jeanette wrote, ”...what is missing is their learning that there is an interior life - where we can explore as many different worlds as they do - where we can laugh, make love, watch Mick Jagger on a rope bridge - we can read, listen to music and through the magic of technology.”
”...for real understanding of coping with some of the simulated conditions,” wrote Emma J., “I suspect the value may be minimal. The emotional and psychological aspects of coping with chronic pain, limited mobility, vision and hearing deficiencies, dental problems, poverty without realistic hope of eventual relief can be insidious.”

Oh, I'm not so sure about that, Jeanette and Emma J. No one needs any kind of suit to imagine other worlds, to laugh, make love, etc. Young people do those things every day. And I would bet good money that after even an hour or so in the suit, participants begin to see the difficulties you mention, Emma J. We all come to realize that growing old won't always be easy.

No suit can exactly emulate a human being physically, emotionally or any other way. But for many years, AGNES has been educating people who need or want to know what daily life is like for old people. Let's not throw out that baby with the bath water – the AGNES suit is a good tool that has proved its importance and usefulness in hundreds of ways.

As it happens, just a week ago, The New Yorker published a long, online profile of the director of the MIT AgeLab, Joseph Coughlin, written by the estimable Adam Gopnik who tried out the AGNES suit. I will quote his experience with it:

Slowly pulling on the aging suit and then standing up—it looks a bit like one of the spacesuits that the Russian cosmonauts wore—you’re at first conscious merely of a little extra weight, a little loss of feeling, a small encumbrance or two at the extremities.

“Soon, though, it’s actively infuriating. The suit bends you. It slows you. You come to realize what makes it a powerful instrument of emotional empathy: every small task becomes effortful. 'Reach up to the top shelf and pick up that mug,' Coughlin orders, and doing so requires more attention than you expected.

“You reach for the mug instead of just getting it. Your emotional cast, as focused task piles on focused task, becomes one of annoyance; you acquire the same set-mouthed, unhappy, watchful look you see on certain elderly people on the subway.

“The concentration that each act disrupts the flow of life, which you suddenly become aware is the happiness of life, the ceaseless flow of simple action and responses, choices all made simultaneously and mostly without effort. Happiness is absorption, and absorption is the opposite of willful attention.

“The annoyance, after a half hour or so in the suit, tips over into anger: Damn, what’s wrong with the world? (Never: What’s wrong with me?)

“The suit makes us aware not so much of the physical difficulties of old age, which can be manageable, but of the mental state disconcertingly associated with it—the price of age being perpetual aggravation.

“The theme and action and motive of King Lear suddenly become perfectly clear. You become enraged at your youngest daughter’s reticence because you have had to struggle to unroll the map of your kingdom.”

MIT AgeLab has worked with thousands of volunteers of all ages – including old adults even past age 85 - to participate in research and interactive workshops. And the AGNES suit has helped other thousands create new technologies that help people design products, delivery services and policies that improve the lives of elders.

And here's something else that is useful – recounting the “misery of old age.”

When I began this blog 15 years ago, I was appalled by all the negative writing about old people. Whether academic research, news and magazine stories, movies, TV, novels and more, the prevailing attitude was that getting old is the worst thing that can happen to anyone.

I didn't believe that and then made the rookie mistake of ignoring too much of the downsides of ageing. Looking back at those years, I found a lot of overstatement on my part about how good life is after 60 or 70 or 80 and more.

Geez. Of COURSE, our bodies slow down. Some body parts stop working properly. Others give out. Mysterious aches and pains show up. It's what bodies do. The key in old age is to adapt but that's for another day.

What I've changed here at TGB now since I realized my early mistake in being a bit too rosy about the effects of growing old, is make room on a fairly regular basis to complain and moan and groan and bitch about the irritations of life in the old person lane.

I believe this kind of time is valuable particularly now when we in the oldest generation have lived most of our adult lives in an atmosphere where old age could barely be acknowledged let alone discussed.

But it helps - a lot sometimes - to learn that other people are struggling through the same things you are. It doesn't mean we don't also laugh, read books, go to the movies and whatever else engages us that is still possible. But letting off steam together kind of clears the air.

But no one here is “making a misery of old age.”



Comments

I am grateful for your post about agnes. I've been annoyed with my 87 year old mother, focusing on what she can't do, like walk a mile with me, or pick her feet up more when she walks instead of the fact that she still does so much. She still lives in her own house, plays bridge and goes out several times a week with her friends. This summer she's going to England and Scotland. This post made me realize, I need to do two things. I need to appreciate what she can do, and stop viewing her from my little girl perspective that my mommy can do anything. Maybe at 67 I've become the crabby old lady down the street.

I understand why a young person wearing these suits would think, “I’ll never let that happen to me.” (ha, ha) or “Shoot me before that happens.” I agree that most of us have some but not all the infirmities of the old age suit. I suggest that a person would have to choose a random card with a short biography to put old age in perspective. The card could include some of the major events in a person’s life, good and bad. For example, Jane P had a long and happy marriage. She had two children, one died from leukemia and the other calls often but lives far away. Jane is sometimes lonely. She can no longer do the long hikes she previously enjoyed but she appreciates her short walks through the local park. I’m sure you all can think of similar scenarios.
I would also include a card that says, “You do not have to wear the suit. You graduated from college, got a good job, and were recently married but you were hit by a car while jogging at age 33”. Old age is sometimes tough but remember the alternative.

The email you got would not have surprised me. I was diagnosed with MS at age 30, and during my worst attacks, I often imagined how horrified people would be if they could feel what it was like to be in my body. I discovered then that people assume their reality is everyone's reality.

"I have aches and pains too, but I power through." "It's all about attitude!" "If you'd stop drinking diet Coke you'd be fine." "But you LOOK good!"

The AGNES suit is a wonderful tool (how anyone could describe it as a "toy" is beyond me). Not only can researchers use it to make the lives of seniors--and anyone who suffers infirmities--better, but it increases the wearer's empathy.

And empathy is sorely lacking in our society.

I would agree with Emma in that wearing the suit makes one appreciate the difficulties one might encounter in old age, but the wearer always knows in the back of his mind that the suit will soon come off. It doesn't impose the psychological and emotional effects of waking every day knowing the suit will never come off, knowing that this is as good as life is ever going to be. That knowledge takes a toll, even if only in the subconscious.

We used “pieces” of the Agnes suit when I was working at a software company. Can someone with arthritis in their hands make this keyboard combination? Can somebody else see these letters on the screen? It was especially good for young designers. They really want to get it right, but they just can’t quite imagine what the experience is like.
That’s why too many companies still create things that tons of people can’t use.
Bottom line— the suits make cute videos, but they’re also serious tools .

The New Yorker article is really fascinating, not only the part about the suit, but the sections on the researchers working on the frontiers of longevity and dementia. As Gopnik noted, it's not about living forever, but aiming to remain well as long as possible. Interesting, too, that much of the old wisdom, like eat well and stay fit, still remain true.

What troubles, even infuriates me, is the frequently inferred, even directly stated idea that the diseases and infirmities older people face ARE THEIR FAULT!
They led an unhealthy life, took foolish chances, didn't have faith, etc. The cruelty and ignorance of such assumptions!

"...people make too much misery out of old age. " Is she kidding? People aren't made with cookie cutters. We don't all have the same physical abilities or shortcomings. We don't all have the same coping mechanisms or support systems nor the same income to enjoy the kind of things the person who sent the email does.

I was at the senior hall this week and asked about a woman who was always a ball of energy, signed up or everything that came along. In a months' time she had fallen, broke a hip and while she was in the hospital her kids sold her new condo and found her an assisted living place to move into. I hear those kinds of stories all the time and they scare the crap out of me.

I keep busy doing the same sorts of things the emailer does but it wears on the back of my mind that it could all change in a heartbeat. It wears on me that all my friends have varying decrease of disabilities that we factor into all our outings. It wears on me that no one really knows if their money will last long enough...are we spending too much or too little? Do I let these worries rule my life? No, but in the dead of night when I can't sleep I have to fight them off.

I found the Agnes post enlightening. Then I went to leave you a note and found that I couldn't. You blanks at the bottom of this form do not Keep my info any more. Darn.

Yes, much of me is Agnes-like. And much of my wear and tear is from my own making. I try to keep on top of it all, but sometimes nature is slower than I am. Hugs to you....she says entering everything all over again.

I think misery is a strong word and everyone can have their own definition. I'm on the acceptance and accommodate page. I've accepted a cancer dx 30 years ago,the early death of my first love husband and also my second love husband's death. Long ago I learned there is no free pass in life and there is no reason why I would get one, so,acceptance. I make accommodations for everything to suit me. I answer only to myself. I've been blessed and I love and enjoy every day that I can laugh, love and live.

I must admit that I did not read your article "completely" today! However, what I did read hit me the wrong way.

You are tryin' to be everything to everybody. But without bein' a "pollyana" … personally, I think you should dwell on the positive, even as I believe -- that you are a cancer patient.

I am 94+ with many "issues" -- medically, financially, etc. with a spoused that has been diagnosed … However, I like to hear the "positives" in spite of all the "negatives" we ole folks have. It goes with the territory and we signed up to live as long as possible -- thusly, exposin' ourselves to all the personal ills of the world.

I am more concerned at the direction of our country … it's a very ill entity right now … without indicatin' my political preference. Let other sites dwell on negative issues in life -- let's make our ole age as livable and happy as possible. If you are "hurtin'" … tell your doctor or psychiatrist -- tell us about your "happy's" … small or large.

I thought the AGNES suit to be a good comparison point for younger people to allow a small degree of understanding if the frustration aging can bring.
I’m currently vacationing in Scotland. I prepared for this vacation by increasing my walking, hiring a personal trainer to help me get in shape and exercising daily.
I was ready to walk the Highlands. But......

A rainy day in Dublin, our first stop, shoes with a slick bottom, a tad too much whiskey and hurrying through a stoplight caused a fall that tore tendons in my ‘good’ knee. Not the previously broken knee but my reliable good knee. Now both knees hurt and I’ve had to curtail my vacation and come home 2 weeks early because I can’t cope on my own. I bought a walker in Dublin that will be coming home with me.

The unexpected, when it occurs in we elders, is most often more difficult to overcome. Our old bodies simply don’t heal at the speed they used to...or mine doesn’t.

I’m always pleased at those of us who keep on truckin’ at 80; 90, 100. But they are a minority.

Ronni, as your statistics show, more of us have chronic issues than don’t.

That sucks but it’s life.

Most of the New Yorker article about the frontiers of aging was informative and useful , but I think that Gopnik - like reporters before him who donned the aging suit and listened to the associated spin - "drank the kool aid."
Not every age-related disability happens to everyone, and rarely do they all come upon us at one fell swoop. While many health issues are progressive, others (like arthritis) are episodic and variable in intensity -- giving us time to work out adaptive strategies as well as providing intermittent periods of relief .
And what about highlighting individual responses? Wouldn't it be great if trials of the aging tools could be followed by videos - narratives of old people speaking of how they've coped (or not) and what They would like younger people to know about them?
Finally, Gopnik notes that the glum looking old people he sees on the NYC subway are probably that way because of all the troubles they have accomplishing daily tasks. I wonder how many joyous looking younger people he sees. Couldn't the problem be that they are On the subway? Or musing over the troubles of our country, of the world? Whatever our ages, we are more than our bodies.

"... it helps - a lot sometimes - to learn that other people are struggling through the same things you are. "

Yes Ronni, absolutely! After all, nobody thinks it is silly for teenagers to huddle together to talk about the issues that arise with puberty.

Likewise, new mothers huddle with other new mothers to share the issues of new motherhood. Women struggling with infertility know that nobody understands their feelings as well as other infertile women. Menopausal women talk and share about menopause. Cancer patients get together to talk and share. And on and on...

Because it's what humans--particularly women--like and need to do. To share our stories, share our wisdom, explore new territory together.

Elders talk and share about aging. It's what we do and it's immensely valuable. And for that purpose, TGB is without a doubt the best online forum in the English speaking world.

Thank you, Ronni, for making the point that we are not all alike. How sad and demoralizing it is that we humans are frequently so critical and unaccepting of what is different from our own experience. Whether it be differences of aging, illness or wellness, sex, religion, political affiliation, etc., it is difficult for many of us to place ourselves in another's circumstances and try to understand the differences. As I have aged and experienced this intolerance on a frequent basis, I have become more isolated. I just don't have the patience any longer to endure the unkind and intolerant.

Such a good post....with all that you are facing you are such a blessing to your readers.

I ditto Marian's comments, all of 'em.

Thank you, Marian!

1. I love you, Ronni, and more for taking on those comments. I still work and in the hospitality industry where I've conducted training on ADA and accommodation. The AGNES suit is a bit like the experiential sessions conducted with the blessing of a PWD responsible for a large metro area's disability access. Prior to the session ppl use a mobility device, wear an eye patch or ear plugs and go through a half day of a convention experiencing a bit of what some of us live regularly. The Ah-Has are immense.
2. I'm having an especially bad age/pain/chronic illness week. Leaving home (where my office also is) requires extra work to, first, look presentable. (I don't work in jammies - always showered and dressed-ish but not the same as a biz meeting.) Then to leave the building and push my body outside & to be with ppl. I'm tired.
3. My brain, except when pain is great, works well. I never thought I'd age badly - well that my body would get cancer and complications fr radiation would result. Youth just doesn't know!

So all of you aging so well, lucky you. If we can help others have empathy, hooray!

I don’t understand Emiliano's response. I found the first post very interesting and informative and the second a reassurance that we don’t need to feel we must be the paragons of eternal health and fitness always on the go or that there’s something wrong with us and it’s our fault.

Don’t see any negativity in that at all. Actually I see empathy and understanding, but ,most of all, assurance that we are OK no matter our particular set of problems.

You and your blog has been a great help to me on many occasions on many subjects.

Thank you, Ronni, for that.

Thanks for the post, Ronni, and the thought-provoking comments it engendered. I relate most to the point made by Betsi: “... people assume their reality is everyone's reality.” Why is it so hard for people to relate to the “other”? For young people to relate to the old; for men to relate to women; for whites to relate to people of other races/ethnicities; for women who've never needed an abortion to relate to women who want to keep it safe and legal; for the rich to relate to the poor; for the healthy to relate to the infirm? I think maybe it's because we are all of us too small-minded.

To paraphrase the fictional Atticus Finch: “You never really understand a person until you consider things from his point of view … until you climb into his skin and walk around in it.” Well, if that's what the AGNES suit is attempting, then I applaud the effort, however imperfect some may find the results.

There are plenty of other blogs to turn to if one just wants to hear the “happy's.” I appreciate it, Ronnie, that you, instead, keep it real.

Again, I'm with Betsi: Empathy IS sorely lacking in our society.

The older I get, the more I see and realize that some people are born without the empathy "gene". They are often the same ones who would not understand the meaning of "There, but for the grace of God, go I."

Thank you, Ronni and other commentors, for your insight, wisdom and spunk.

Adaptation ..... that’s what life requires at all ages in a multitude and variety of ways. Of course simulation or role playing is never like the real thing — and in varying degrees. But as you and others have described here does have value in helping a person gain some understanding, even empathy, for another’s experience.

Helping people regain skills and/or adapt to necessary functional changes — mind, body, spirit — has been my profession since midlife. Our training exposed us to simulating some of the functional limitations a person can experience at any age, including as we age — sensory impairments or loss, mobility issues, attitudinal choices. I found some of these AGNES-type exercises to be informative approximations for what individuals told me they actually experienced, some my mother had and now that I’m a true oldster, some I know first hand.

I think one of the most challenging aspects of aging for me has been adapting to reduced endurance, increased fatigue rate, fluctuating instances of pain. I can only imagine how constant relentless never-ending pain as my husband felt might impact me. Whatever, I much prefer knowing my reality, welcome discussions with those sharing their own. This does not preclude my recognizing and using positive language describing happy feelings and experiences, too. So, keep telling it like it is here — the good, the bad and the ugly.


Sent from my iPad

Even though in this post, you were quoting Cathy J., not me, I stand by the comment I wrote on the AGNES suit and the Try Guys videos. As I said, the suit and the work of the MIT Aging Lab are an improvement over ignoring the issue, as has been the case in the past. But I still don’t think walking a few hours in my (simulated) shoes provides any profound insights into what old age really feels like. If you can stop being old by merely taking off the costume and returning to a healthy, agile young life, you are not getting it. Nor does makeup that comes off once it has shocked and amused your young wives or girl friends give you a sense of how much your face will change when you have grown truly old. Moreover, I reserve the right to be somewhat offended at the standard old person jokes and pratfalls in the videos.

I acknowledge completely that people age differently and some lucky old people are even fortunate enough to be spared the pains of arthritis and neuropathy, the vision problems and the difficulties of movement. It is also a fact that we old ones are very good at adapting to our limitations and making the best of our lives. That is made clear in the comments on every Time Goes By post. And I repeat what I said about TGB: it is the best blog there is about age and aging and I have been immensely grateful for not only its insights but for the opportunity to share my own insights and opinions, whether or not they agree with those of everyone else.

Hi Ronni - I love this blog and all of the comments -but oh the frustration of not being able to continue the conversation verbally!!!! Of course young people dream of other worlds, making love, laughing etc - the point I was trying to make is that very rarely is that ability mentioned in relation to old people - we either hear of all the problems - and trust me at 81 I know quite a lot about them - or we hear about the "wonder performers" running marathons etc I would just like occasionally to remind the commentators that we are more than our physical bodies - inside the crumbling edifice is a vital, interesting,interested human being .

"I think one of the most challenging aspects of aging for me has been adapting to reduced endurance, increased fatigue rate, fluctuating instances of pain."as joared stated.

Endurance! That is what I am missing! I am 74 and exercise and still feel pretty good (can change in a heartbeat, I know). I used to walk everywhere but now I look at that bus going by and opt to jump on so I will have less fatigue.

Sorry, hit the wrong key --

When I am walking, I am still able to pass the older? people still out walking slowly toward their destination
but every time I pass, I think --that phrase someone stated above "there but for the grace of God go I.

The younger crowed is rushing past me now-- even when I am walking as fast as I can. That must be a message to me that I am not as capable as I would want to believe I am.

So I guess I am somewhere in the middle of a decline I am not wanting to admit.

Amen to Carole! "Everyone" under 50 or so DOES think that the sufferings of elders ARE in some way their own fault.
"If only they'd, when younger, adhered to a vegan diet, jogged five miles a day, and thought nothing but positive thoughts, they would have never carelessly grown old and enfeebled!" is the barely conscious calculation.
The thinker, of course, does these things him/herself. Or, at least, CONTEMPLATES doing them and knows that they should, which is almost the same thing.
Because if the infirmities and limitations of an aging body can't be pushed back by either good actions or good intentions, THEY are going to be old in 30 or 40 years, too. Jogging and quinoa and happy affirmations may not keep it at bay.
The horror ....
I'm being sarcastic, of course, but we all suspect this is what they're thinking. What we're thinking--if they ask us, which they never do--is, "Just wait, kiddo."

I don't think the commenter implies that we bring it on ourselves.

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