When I was about ten years old and enjoying our Sunday afternoon family drive, we passed a church announcement board that said, “Don’t regret growing old. Some are denied the privilege.” Of all the billboards, outdoor signs, and Burma Shave plaques I’ve passed in my life, I’m not sure why this one stayed in my memory banks, but it pops into my mind whenever anyone says, “Gee, I’m getting old.”
Don't regret having to retire. Some are denied the privilege.
However, this week’s topic is “Retirement,” a life stage I know nothing about, despite the fact that I am 69. You see, I did everything late—figured out my career late, got married late, and had children VERY late, so I still have a second-semester senior at home, whereas my contemporaries waited for those fat or thin envelopes to arrive from colleges twenty years ago. (Here is an example of a current fat envelope.)
And even though this is my last year of helping with high school homework, watching the school musical three times, and holding my breath while my youngest child performs the solo onstage, I still have four more years of non-retirement, consisting of being sympathetic during the inevitable weepy “I’m lonely no one likes me I want to come home” phone calls from college, proofreading term papers (or occasionally writing them), treating my daughter like a conquering hero when she returns home for holidays, and working to pay for the part of her tuition that her scholarship doesn’t cover. (In case you don’t know, today’s college tuition is 30 times what ours was.) So when someone says, “I’m not ready to retire,” I think, “Don’t regret having to retire. Some are denied the privilege.”
However, I am not complaining about my inability to retire. In fact, the theme of this reflection isn’t really about retirement or growing old. It’s about something else that I experienced last fall, which put a different spin on aging. About a year ago, my older brother started making strange comments, complaining, for example, that people were entering his apartment and hiding his things. Sometimes he would be telling me something, and the words became gibberish. A few times I got a call from a store manager saying that my brother had gotten lost and would I please come and pick him up. One time, I got a call from the gas station across the street from his apartment because he couldn’t remember how to get home. Like many people (it turns out) who have a loved one that starts acting strangely, I initially tried to see these events as isolated incidents. However, when my brother started urinating and defecating throughout his apartment because he couldn’t remember where the bathroom was, the management of his building and his doctor insisted that I provide him with 24-hour care until I could move him. So I hired a caregiver off Craigslist last fall.
She turned out to be a crook, but when I fired her, I received a letter from a lawyer accusing me of elder abuse, elder neglect, and financial exploitation. A report had been submitted to the state authorities accusing me of the same things. She also refused to leave, citing an obscure Illinois law that states if you invite someone into your home for three days, they have established a “tenancy,” and you have to formally evict them in court, which takes weeks. Although my brother’s building finally evicted her, I was under investigation for the next five months, and it was only last Monday that I was finally exonerated and awarded guardianship of my brother, who by then had been transferred to a highly expensive care facility.
I had one day to feel good about the end of the investigation, and then yesterday I got my lawyer’s bill. I had been told I would have to pay $2000 to get guardianship, but all the investigation actually cost many, many times that, and this was only the first bill. I also am awaiting a bill from the guardian ad litem, and my lawyer’s final bill. Which means that the money I was hoping to contribute to college tuition will now go to lawyers. Probably for years to come. Probably until I . . . well, you know. In the meantime, my brother is blissfully unaware of any of this. In fact, he has no idea what day it is, where he is living, or whether he even has sister. He hides his shoes under another man’s bed then claims they were stolen by the same people who’d entered his former apartment. I’m not sure how I’m going to afford to keep him in his current location, but the only other option is a Medicaid facility, and in the words of a geriatric social worker who has been helping me, if she had a choice between a Medicaid facility and death, she would “choose death.”
The moral of this story is: Don’t regret growing old and having to retire. Some are denied the privilege, while others are denied the privilege of even knowing it’s happening.
Joan Matthews
Such a stressful string of events! Linking the quote with your story kept a continuity through line. It does make me yearn for medical/health care as a right, instead of a second/third job. Thank you for sharing! I’d also be interested in your internal state in relationship to your brother….
My internal state was not the best while I was actively caring for my brother. The worst part was caring for a human being who was no longer house-trained. I would ask him to remember a time when he always used the bathroom (rather than the wastebasket, a drawer, or the recliner), and it seemed as if he was thinking about it, but then said that sometimes he could not get to the bathroom in time or forgot where it was in his one-bedroom apartment. It was hard to be sympathetic to his plight. He is much better off where he is now, and I learned through this process that “memory care,” which is indicated for someone who has Alzheimer’s but is physically healthy, is much different from a nursing home. He is living in a clean, dorm-like building with his own room, three meals a day, and lots of freedom of movement within the large locked facility. He has his own furniture and lots of friends. Unfortunately, Medicaid does not pay for memory care in Illinois, only a nursing home, those places that are worse than death, according to my social worker friend.
My heart goes out to you, and we need a revolution in care. I often feel as if I have a part-time job caring for elders that’s entirely unrecognized, and unpaid to boot.
My heart goes out to you, too, if you are taking care of elderly parents or relatives (plural). I had no idea if would be so hard, and it takes a selfless person to survive. Good luck to you.
I was right there with you on the child who was a senior – only mine was a senior in college, not high school, but still much later than the children of all my peers. Then I got to the part about your brother, and the “different spin” on aging. I am so sorry that you have to deal with this, and that you have a financial struggle on top of the emotional struggle. Thank you for reminding us that those of us who get to retire are lucky!
Thanks, Suzy. It’s weird being in (or almost in) another generation from the parents of your kids’ friends. I am mistaken for Grandma all the time. How did your son or daughter feel about having an older mom? I’m still waiting for my daughter to look at me and say, “Gosh, you’re ANCIENT.”
She never says that, in fact whenever I make comments about being old, she says “you’re NOT old!” Maybe she’s just well-trained. However, when I discovered that I was older than a lot of her college professors, THAT made me feel ancient!
What a sweet young lady. Moms are archetypal and ageless.
What a tragic and powerful story. You are right that ,many Americans do not have the luxury of retiring and must keep working to make ends meet. And our health care system is a disgrace. You and your brother deserve a better outcome. Looks like the only winners were the lawyers.
Thank you, Laurie. All the way through the process, I kept thinking, in our society, a senior and his money are soon parted.
You have been through a lot!
Wishing smooth sailing from here on to a very caring sister and mom!
Thank you, Dana! I am grateful every day that I can remember those three words after drawing a clock face. (If you don’t know what I mean, you are probably too young to be given the “Alzheimer’s” test at your annual checkup.)
I don’t remember getting the Alzheimers test but at (gulp) 75 I’m certainly not too young!
Hope things go well for you in this new year, and that we’ll continue to share our cares and our memories.
Hi, Dana: I get the Alzheimer’s test every time. Maybe the doctor suspects something! The doctor says three common words (ball, bird, cookie), then asks you to draw the face of a clock, or sometimes walk down the hall and back. Then he or she asks you to repeat the words. If you remember two out of three, you’re OK.
Maybe at my next checkup I’ll ask the doc if he thinks I need it!
I usually manage to remember two out of three in the office, then suddenly recall the third one two hours later!
You summed it up so eloquently in your last paragraph. You have such a full plate — although writing about it won’t pay the bills, I hope it’s at least a release to put it into words. In order to take care of others, you have to take care of yourself. I know it helps me to write.
Thank you, everyone, for your heartfelt comments! Yes, it does help tremendously to write, and although, as Barbara says, it doesn’t pay the lawyer’s bills, writing definitely provides spiritual remuneration and release.
I am late to the conversation, but wow, what a story! I loved seeing what a current acceptance envelope looks like and congratulations to your daughter, but yes, the large bills continue. I certainly didn’t see your brother’s care coming. What a strange and stressful situation to be in with that awful care-taker. And the cost of long-term care is astronomical these days. I hope you find relief, but our healthcare system is not designed for it.
I am just beginning to write that upcoming prompt about care giving. I understand your plight, though was in a different situation with my mother for a long time. I send you love and support through these pages.
Thank you, Betsy! Caregiving is not for the faint of heart, and I can only imagine what you went through if the situation with your mother went on for a long time. I look forward to reading your story.
What a nightmare! I feel so bad for you that you had/are having to live through it. I agree with others’ conclusion that this is a systemic problem of both our health care and legal systems, but I know that doesn’t help when you’re in the middle of it.
I wonder if your brother’s condition is psychosis or dementia? I’ve witnessed some of those same symptoms in a schizophrenic relative. Maybe not important, although some psychoses can be managed with meds.
I wonder too — maybe some lawyers on the site can weigh in — if the lawyer might compromise on the bill, especially if they initially told you it would cost $2,000. I have negotiated successfully with both lawyers and hospitals in cases like this.
On a positive note, I was struck by your line about seeing the high school musical three times. Doesn’t THAT bring back memories?
Hi, John: I had my brother evaluated, and the psychologist did say that there were paranoid tendencies in addition to the dementia. I am looking into medication, although at this point, it’s hard to get him to take anything.
Writing about this has really helped, and I am grateful for everyone’s support. My heart goes out to all of you who have had to watch Alzheimer’s or dementia gradually steal a parent or other loved one from you.
I am kicking myself that I wasn’t more vigilant concerning the lawyer’s activities. I was entitled to monthly statements, and honestly, I would have seen that the lawyer had exhausted the retainer in three weeks and withdrawn my petition for guardianship immediately, since more than half of the fees were incurred in his defense of me against those false accusations.
And yes, on a positive note, I go to every single performance of every single concert and musical. The productions these days are way more elaborate than our modest performance of “The Fantastiks,” in which we had to replace the word “rape” with “nap” (short for “kidnap”).
You know, I have found myself thinking about that song (“It Depends on What You Pay”) from The Fantasticks lately, wondering how the ’60s could have been so insensitive to what we now refer to as “rape culture.” I would not dream of performing that song as written today, and I also wonder if that’s the reason that such a wise, wonderful show is rarely performed today. Perhaps the powers that be, instead of being simply prudish censors as we thought, were more “woke” than we imagined.
Wow, you’re right, that song is pretty insensitive, and thank you for pointing it out. It was written in 1960, barely into the decade of consciousness raising. When you read the lyrics and know the story, they really are talking about a faked kidnap, so maybe our El Gallo was right: “The proper term is ‘nap.” I think the long “a” sound is more musical and makes for better singing, but that’s NOT a reason to use an offensive word.
It did occur to me now, when I looked back at the yearbook, how strange it was that the school would choose a play with only one female role when there were and are always more girls than boys who want to be in school productions. I wouldn’t give Dondero too much credit for being “woke.”
I was a freshman when “The Fantasticks” was performed (Betsy Sarason here). I was one of five called back for the role of Luisa; absolutely thrilled about that, but knew, as a freshman, I had little chance for the part. I wound up doing makeup for The Mute, played by Lauren (can’t remember her last name, but also female and very nice), so I was part of that production, and every subsequent one put on at Dondero during my tenure there. I became head of the makeup department.
Perhaps this was the first show Miss Kibby and Miss Homer had directed (in 1966, the play was still fairly young and innovative) and they didn’t want to take on a monster production, like Miss Levi did in subsequent years? Their second semester production was “The Miracle Worker” and I did have a small role in that one (one of the blind girls at the Perkins School for the Blind in Watertown, MA, not far from where I currently live). Much bigger cast and production, even if not a musical…and the black servants played by our students in black face, since Dondero was lily-white!
I just read a comprehensive discussion on the web about “The Fantasticks” (I was in a production at camp in 1969; played the Mute, have the cast album, even did Luisa’s monologue for an acting class in college, so am pretty familiar with it). According to what I read, it was never the authors’ intention to literally mean rape. The play is loosely based on an Edmond Rostand work, “The Romancers”, and they were using the term in a “classical” sense, always to mean kidnap. Of course, not sure that modern audiences understood it that way. Some of it also conjures up “Candide” as the lead character (in this case, Matt, not Luisa) goes out in the world and is brutally beaten, just as El Gallo is about to do the same to Luisa, after taking her prized necklace, the keepsake from her deceased mother. This is an allegory and difficult to judge in realistic terms.
I also think it is tough to judge a 60 year old work through a modern, more socially advanced lens, but, from what I read, the script was adapted in the final years of performance and the word “rape” removed entirely, so the show DID adapt to become more sensitive to current times. We certainly cringe at the thought of a “romantic rape” as we see the Harvey Weinstein trail playing out on TV.
Betsy, thanks for the comment, the memories, and the new info. Glad to hear about the play’s inspiration and that they evolved the show as consciousness grew. BTW, The Mute was played by Lauren Bityk.
Thanks, John. I never would have remembered Lauren’s last name.
Hi, Betsy: Sure, I remember you! When I first registered for Retrospect, the program somehow dredged up an old, old nickname, and even though my display name is supposed to be my actual name, Joan Matthews, I am still “mboone50” on the screen. Anyway, it’s good to hear from another fellow Donderoan. Thanks for the information on “The Fantasticks.”
My daughters often complain to me about how sexist and unenlightened former times were, and I try to explain to them that we just weren’t aware of issues we now take for granted. When my father taught at Dondero in the early 1950s, he was in the Minstrel Show. I absolutely cringe to think that he and other teachers put shoe polish on their faces and spoke in offensive accents to an audience of white folks, who honestly didn’t think about how they were denigrating an entire race of human beings. Now when we watch older movies and TV shows, I share their disgust at how Asian characters are sometimes depicted and how offensive those “My name Jose Jimenez” skits were to the Hispanic community.
Of course, they consider me to be behind the times, since I still struggle with five genders and three sets of third-person pronouns, but referring to a non-binary friend as “they” seems quite natural to them.
I quite agree with your depiction of the cringe-worthy racial stereotypes from our era, Joan. And as for the gender-fluid terms that our kids use so easily, four years ago, my younger child (who had already told us he was pan-sexual), announced he was transitioning and we should now use the pronoun “she”. She changed her name from Jeffrey to Vicki (we still sometimes make an unforced error, as she was 26 when this occurred) and a few years ago began dating Jamie, who is a “they”, which was definitely confusing when discussing how many would be going to dinner (all lived in the San Jose area at the time, we are in the Boston area, so we didn’t see any very often). We liked Jamie very much, but the two have since broken up. Vicki has been gracious with us, teaching us the terminology, trying not to get angry when we make mistakes. It is a learning process, but we are on-board and trying hard. We are loving and accepting and that goes a long way.
It is indeed a learning process for everyone, and Vicki is lucky to have such loving and accepting parents.
My kids are very comfortable with the concept of transitioning and easily move from one set of pronouns to another. The older we get, the harder it is to learn a new language, however, and I find myself using the wrong pronouns routinely. In an odd way, it helps me understand verbal autistic children, who often struggle with pronouns, calling themselves “you,” because that’s what someone else calls them, and calling others “I,” because that is how others refer to themselves. After a while, an autistic person might stop using pronouns altogether, which I find myself doing when two sets of pronouns are required in an ongoing conversation, although I am getting better, since I don’t want to be some old lady who can’t change with the times.
Joan, I’ve written about Vicki twice for Retrospect. If you have time and interest, you can read about her first day of college at “A Long, Hot Goodbye” and how she told us of her transition in “Vi-improved”. She is 30 years old now and lives in San Jose, CA. When we visit, we get to see Patti and John too, an added bonus!
Hi, Betsy–I read both stories. Thank you for recommending them! Both of them are beautiful and heartfelt. Reading about the first day of college brought back memories of that day when we had to say goodbye and go home then walk past a quiet, unoccupied bedroom every day. It seemed like an eternity until Thanksgiving break.
I am in awe of Vicki for knowing what she wanted, then taking the steps to achieve it. My Julia and I often discuss, how can a person knows that they belong to another gender? Despite the diversity of our times, it takes immense courage to step into the unknown, even if you’ve known all along that it’s where you belong. I’m glad Vicki is doing well.
Thanks for your comments, Joan. It is good to be in touch.