Have you ever been on vacation somewhere and gotten in a few great days, only for the rest of the trip to be completely rained out? I’m talking rain rain, not just drizzles – enough of a downpour to make you stay in your hotel room, praying for some sun. Such a crappy feeling, isn’t it? When I reflect on the past three (!!) years and what we’ve experienced in senior living, that analogy comes to mind; the pandemic has been a storm, washing out the final weeks/months/years of people’s lives. Truthfully, it’s been more of a hurricane, whose aftermath has a ripple effect that seems impossible to clean up.

I’ve worked in some questionable senior living communities, from a new build that ran “lean and mean” (read: with dangerously low staffing ratios) to, most notably, one that was on the verge of bankruptcy. Still, nothing holds a candle to what I’ve seen COVID do to assisted livings. I’d go back to bankruptcy in a heartbeat if it meant we could erase the below realities:

• If time is a thief, COVID is Doris Payne. The past three years have been like a time warp, only the elderly don’t have any extra time to spare. Many had their lives cut short, succumbing to the virus and passing away. Others were robbed of enjoying what little time they did have left, spending their final months/years in a very lonesome and unusual solitude.
• Speaking of solitude, I can’t imagine anyone having been more isolated during the pandemic than those in senior living. For longer than I like to recall, they weren’t permitted to leave their small apartments for any reason, even to get some fresh air outside. Window visits with family members were only allowed on milestone birthdays. What constitutes a milestone when you’re toward the end of your life? Isn’t every year a gift? The windows were sealed shut, no less! It breaks my heart thinking of not only what was implemented for their safety, but how terrified we felt and how desperately we wanted to keep them safe to implement it all in the first place.
• There is no doubt that the precautions put in place to keep COVID out of our communities resulted in significant physical and cognitive declines. Remaining sedentary isn’t good for anyone, let alone those who are already in less-than-ideal shape. I witnessed firsthand the rapid progression of dementia in some and the debilitating weight gain & de-conditioning in others.

The above is the tip of the ice berg. No one person or organization is to blame for how the pandemic was handled in the senior living world; no one knew what we were up against, let alone how to battle the virus and keep our most vulnerable safe. We also had— scratch that, have — no idea how long it’ll last. Everyone did and continues to do their best, learning as they go and cleaning up the mess this hurricane has left behind. Here’s to hoping that 2023 is a year of healing, change, and rebuilding.

I may still be on maternity leave, but I had a taste of “work” this week as I connected with some colleagues. Someone very special to me was faced with making difficult decisions on behalf of her dad, who is terminally ill and no longer eligible for chemotherapy. We spoke at length about hospice care, which tends to carry a certain stigma; I explained that it in no way signifies giving up on your loved one, nor does it mean they’re expected to die tomorrow. Hospice is an incredible benefit (paid for by medicare) with the goal being to improve one’s level of comfort as they navigate through end of life, focusing on the quality of the time they have left (vs quantity). It even covers supplies like incontinence products, hospital beds, and medications, if necessary, as well as visits from clergy members and grief counseling for families once someone has passed.

In order to qualify for hospice services, an individual must have a terminal diagnosis that they are no longer seeking treatment for (i.e., cancer without chemo). That’s not to say the symptoms aren’t treated – they’re the main focus! It’s the disease itself that is no longer being treated. A doctor must also certify that they feel the person has less than six months left to live. As we know, no one (earth-side, at least) can predict with absolute certainty how much time someone has left; this is truly an estimate, if not even a formality. I have known many people who have been on hospice for years!

Once evaluated, hospice determines what they feel an individual needs in terms of services. Some have round-the-clock “continuous care”, whereas others are visited once a week – it really varies and is person-centered. My dear friend’s father, for instance, will be visited by his aid biweekly, which for him is plenty. His pain will be monitored and managed closely, with hospitalization avoided whenever possible. 

Despite its incredible services, its stigma persists; my friend is adamant that her dad not know he’s on hospice. He would be devastated and give up, she explains. He would lose hope. This would be the beginning of the end for him, they feel. Her mom is different, she says – she would absolutely want to know, as there are things she’d want to do.. people she’d want to talk to.

Working in senior living/healthcare, I’ve learned it’s so not uncommon to feel the way my friend’s father does. Hospice nurses and caregivers are used to being rather discrete and, of course, remaining positive. As the saying goes, ignorance is bliss. But lately I’ve been thinking.. would I want to know? What loose ends would I need tied up? What am I putting off? As I’ve also learned working in the field; don’t wait until it’s too late.

I feel like I have deja vu, having just posted about the arrival of Leo 16 short months ago! 😉 As I pointed out then, the subject of my June 2021 post was ~80 years younger than those I typically write about. The same goes for today’s introduction of baby Luca, Leo’s little brother and the second much-anticipated bonus grandson to the nonnas and nonnos I serve. Luca arrived four days past his due date on October 6th. We are exhausted but settling in!

Throughout my pregnancy, I had countless conversations with my loves about parenting, family planning, and the like. One of my favorite ladies reassured me that I’d be ok with two under two, sharing stories of her life with four under five (!!). Ever calm, cool, and collected, I proposed that she likely thrived as a mom of four due to her temperament and nature. She corrected me: “Oh no, I was a screaming lunatic for years.” Talk about validation and encouragement!

Cheers to the *loud* years to come. 💙

I can’t believe it’s been eight years since having traveled to Italy for the three-month volunteer trip that kick-started my career (and this blog). Reflecting on some of my original posts, it simultaneously fees like yesterday and a lifetime ago. Each message holds strong, though; I’m so grateful for all I learned (and am able to apply in my work every day) during my time in VV.

Below is one of my original posts from September of 2014. Re-sharing as I reminisce.. 🙂

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As I’m taking notes from work today, I can’t help but sneak a picture of where I’m writing:

I am so in love with this town (& with Italy in general)! Though I studied abroad in Rome and have been back since, I still find myself struggling with the language; when you don’t use it for a while, you definitely start to forget! Thank God for iPhone apps and Google translate :-O

Working with my loves, I’m realizing, requires me to learn and practice two languages: that of Northern Italy and of Alzheimer’s disease. The latter is more complex and multifaceted than even the most ridiculous Italian verb conjugations.

In one of many insightful essays, Dr. Taylor writes:

“If I call you “Mom” or “Dad,” I am probably not confusing you with my mom or dad; I know they are dead. I may be thinking about the feelings and behaviors I associate with mom and dad. I miss those feelings; I need them. It’s just that I so closely associate those feelings with my mom and dad that the words I use become interchangeable when I talk about them. I don’t take the time or I can’t or won’t make the distinction between the people and the feelings.”

Similarly, Dr. Robbins goes on to stress that:

“Almost always, though, what’s said in the moment does NOT reflect how the person with dementia has always thought.”

Not only are we listening to (and, in my case, translating) what’s being said, we must also attempt to decipher its true meaning. Much like learning Italian, this requires patience and practice coupled with both empathy and understanding.

My phone can help me hold a conversation, but not to interpret unspoken messages. Aside from the always-entertaining hand gestures, most of what I’ve had to learn in Italian is verbal/written. The language of Alzheimer’s, however, is often primarily unspoken.

According to Bob DeMarco, when spending time with his mom it’s important for him to “speak the local language.”

“Eventually I realized I was drowning my mother with too many words. Sometimes, all I needed to do was smile. Or put my arm around her shoulder and my head on her head. Instead of a long explanation about what we were going to do (like go to the bathroom before lunch), I’d stick out my hand and say, ‘Let’s go.’ And she’d come along willingly, even before asking, ‘Where are we going?’ To which I’d just smile and say, ‘To have fun.’”

In my experience, it’s the nonverbal that has been most powerful. It’s the smiling, hugging, kissing (often on the mouth 😐 why do Italian nonnas and nonnos LOVE to kiss on the mouth?!?!), and just being together that have sparked incredible responses and opened seemingly glued-shut doors. It’s the respect, patience, and empathy.. the looking up instead of talking down.. the face-to-face instead of over-the-shoulder.. these are what I’ve seen to brighten days and open flood gates.

I’m a big fan of rollator walkers. Not only are they more stylish, but they’ve also got nifty little seats (for when you need a quick break) with a small storage area underneath. Those baskets are deceiving; while concealed by design, they’re actually pretty deep and can hold quite a lot! When I take residents out on our bus, I have to empty the rollators in order to fold them up, so I can personally attest to how much they carry. A recent lunch outing spanned nearly four hours, not because we lingered at the restaurant, but due instead to the extra time it took to unpack and re-pack the walkers (x2). It got me thinking.. what’s up with all this stuff?

Senior citizens, especially those living with dementia, tend to hoard/value/always carry with them certain items. Material objects can help to maintain connections to past social identities and roles, as well as to provide a sense of comfort and security. They can be so comforting, in fact, that we fill shadow boxes outside apartments with such items. One of the most common I’ve noticed are purses. Regardless of contents, nine out of 10 nonnas are adamant about carrying their pocketbooks. Most are either empty or strewn with tissues and reading glasses, but they’re always slung over shoulders or tucked safely under elbows.

Money is another focus item, and understandably so; it signifies things like security, control, independence, and participation with society. No money is exchanged in assisted living, so there’s literally no reason to ever carry cash. Most still do, though, regardless of the kind or the amount. We recently had to make a fake credit card for a favorite nonna of mine who was fixated on having hers handy.

Tangible objects can provide my loves with a sense of safety; being able to touch them and know they’re close at hand offers reassurance, especially when feeling vulnerable. Losing or having them be thrown away, then, can be rattling. I have a resident who, for whatever reason, is borderline obsessed with cans of ginger ale. A staff member with the best intentions recently cleaned out her mini fridge, taking out 10 of the 17 sodas to make room for other items. To say she was beside herself is an understatement. They were friends, she said, and she just couldn’t understand why she’d do such a thing to her. Needless to say, she apologized and returned them.

Discarding or trivializing someone’s possessions can contribute to feelings of loss of identity and independence. It’s one thing if we choose to throw things out ourselves, but if it’s forced, it can be devastating. So, we’ll stick with longer outings. I’ll unpack the walkers, fold them up, then re-stock on arrival, repeating the process when we head back home. We’ll make “credit cards” and offer ginger ales. Most importantly, we’ll provide comfort and foster security.

As a (relatively) new parent, I’m developing a new appreciation for the phrase “grow out of it”. During the infamous fourth trimester, you pray for time to fly by faster and difficult phases to quickly pass. Sleepless nights, for example, are brutal, though the days are just as long. I remember simultaneously counting down until bedtime while also dreading nightfall, when I knew we’d get no rest. “He’ll grow out of it”, I heard. “He’ll be able to distinguish day from night, and he’ll learn to self soothe.” I’d imagine that as baby Leo grows, we’ll experience an infinite amount of these situations, holding onto hope that with time they’ll diminish. But what if they don’t?

Working in senior living, I’ve honestly been surprised to learn of how much we don’t grow out of. It’s kind of taboo to talk about, since we’d never want to infantilize our residents or compromise their dignity. Let me be clear: I’m not pointing out my observations with malintent, but rather with surprise and even a bit of relief. As a kid, it seems we feel like adults and elders have it all together – that they’ve outgrown it all. In a sense, it’s comforting to know they haven’t, and that no matter how old we get, we’re still so young at heart. Below are some favorite (and most prevalent) examples of things we most certainly do not grow out of:

• Gossiping: I’ll never forget reading the 2015 New York Times article entitled Mean Girls in the Retirement Home. It was published super early in my career and I thought, “This can’t be accurate.” Turns out, it totally is. In a way, gossip seems even more prevalent in senior living than it did in high school, and my theory is that it’s because it’s less secretive: my loves are hard of hearing and though they think they’re whispering, they’re usually not.
• Bickering with Roommates: It’s not easy living with someone at any age, whether they be a spouse, partner, family member, or nonrelated roomie. I would’ve imagined that with age comes more effective communication and, in turn, more mature, successful relationships and living arrangements. Not the case. I once had to draw up a contract for two roommates to sign and agree to (with witnesses!). Some terms included one nonna not using the other’s tissues, each agreeing to never leave the bathroom without TP, and both pitching in to help empty the trash. Neither were open to moving to a different apartment, yet they couldn’t stand one another. Official agreement can be found below. Spoiler alert: they parted ways.
• Competing: In this case, I’m referring to competing for guys. I went to an all-girls high school that was on the same campus as a coed university. Boys cutting through our courtyards to get to class were like fresh meat. Since there are so many more women than men in senior living, the same holds true for my loves: eligible nonnos are hard to come by and nonnas will compete for their attention. Ugh, brings me back.

Leo did outgrow his sleepless nights (thank God), but I won’t hold my breath when it comes to everything else.

As the years go by and new experiences arise, I’m learning that there’s such a fine line between dignity and keeping up with appearances. Actually, one is often disguised as the other; pride and caring what other people think is totally a younger generation thing. We might call it dignity, but that’s not what we’re really trying to preserve.

If our loved one doesn’t care about something anymore and is happy and safe, why do we hone in on it? Why do we obsess over their weight or their hairstyle if they no longer give either a second thought? If our nonna is 90 years old and blissfully ignorant to or, even better, accepting of those extra pounds and thankful for the good food she’s enjoyed, why shame her? Why punish her caretakers?

I was recently told about a particularly cheerful, blissfully confused nonna, “My mother would have never let herself get to this weight – she’d be mortified.” Well, thankfully, she’s not, and you shouldn’t be either. Please let it go. The daughter of a friend of hers from down the hall was equally as upset about her mom’s haircut, which looked gorgeous and was even more practical in that it avoided constant hair in her eyes. The nonna herself? She loved the fuss we made over her new ‘do and thought nothing of her fresh look.

Nine times out of 10, the appearances we keep up for others are just that: facades. We don’t look like our filtered selves in real life, sometimes not even close. Our relationships aren’t always strong and loving, they’re broken. We’re not as happy as our Facebook posts depict – sometimes, we’re miserable, and misery loves company. Let your nonna change her hair, dress down, and gain a little weight. If “letting herself go” means giving up the pressures and the pride, embrace and praise her for it. Be open to learning from her example.