Who Are You Inviting (..them for)?

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Just under two months ago, my brother married his longtime girlfriend in California. While it took place in her hometown, it was a “destination wedding” for most of us on the groom’s side – we all live in the tristate area. Logistics aside, I know one of the most difficult parts of wedding planning for my brother was knowing that two very important ladies wouldn’t be in attendance: our grandmas. The trip was simply too much for them, and we all (sadly) recognized that.

No matter the distance, whether or not to include grandparents in big family events (like holidays and weddings) is a common deliberation in the world of senior care. Naturally, most people can’t imagine being without their loved one during special occasions, especially those involving traditions. Worse yet, they can’t fathom breaking the news to them that they’re not invited. Truthfully, though, when it comes to dementia, having your nonna join you may end up doing more harm than good.

Thankfully, both of my grandmothers’ minds are still sharp; the trip to Cali would’ve taken a big toll on them physically more than anything else. For those living with Alzheimer’s disease, however, physical wellbeing isn’t necessarily the concern – it’s mental health we have to consider. There’s no one-size-fits-all approach to this illness or these decisions, but I’ve come to learn that it helps to gauge how far along someone is in the disease process. If you don’t remind him, does nonno remember you’re getting married? If not given hints, does nonna know what holiday’s coming up? If the day comes and goes, will she know she’s missed it?

Parties of any magnitude can be loud, overwhelming, and super confusing for someone with dementia:

“We’re very glad, of course, to know all these people and know they love us but there’s one little thing that somebody in my predicament can probably understand: whenever there’s a gathering of people, it seems, at least in my mind, to be a lot of confusion. I just feel the need for quiet. I can only think of one thing at a time. And large gatherings, whatever they may be, are very, very hard to understand. … I could remember a lot better if there’s not much going on. I can think better. If there’s anybody else in the room, it seems like – more than just one person I do sort of lose my grip.”

Cary Henderson

Honestly, if they’re blissfully unaware of what’s to come (or keep forgetting), it’s important to consider who you’d be inviting them for. If it’s more for you and not for them, and if attending could result in anxiety and confusion, it’s best to consider not including them. I feel like a jerk even typing those words, especially since a quick Google search on the topic yields only tips and no tough love, but I’ve been on the other side – I’ve gotten grandmas ready for events they’re antsy to attend. I’ve redirected them when they’ve tried instead to stick to their routine. Even more difficult, I’ve welcomed them home and helped to calm their nerves for bed. That wind-down can be brutal, and can sometimes last for days.

Start new traditions. Bring Easter leftovers to nonno and chat about your favorite memories. Show nonna photos from your wedding while you also make a fuss over old ones from hers. Chances are, she won’t remember not being there (& she likely won’t feel sorry she missed it).

Can We Stop Being Weird About Death?

When I talk about my job, I often liken it to working in a school: I’m the principal, my department heads teachers, and the residents our students. Structurally, we’re like a dormitory with its own caf and extra offices. Apartments feature mini-fridges, lack overhead lighting, and are separated by walls that are way too thin. Assisted living is surprisingly comparable socially, too: there are cliques, residents hook up, and newcomers need some time to settle in. Rumors spread like wildfire and most rules are taken as light suggestions, especially those pertaining to alcohol and hot plates.

Some things are drastically different, though. Over the past two months, an alarming number of residents have died – 11 people passed away. Most were on hospice and all were very sick, but it’s still been brutal. Unfortunately, such is the nature of this line of work; in elder care, death itself is not unusual, but the way we handle it is socially so bizarre:

“Death and its companion, grief, have a profound presence in long term care facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they’d helped for months. But the tides of emotion that ripple through these institutions are rarely acknowledged openly.”

The Washington Post

Naturally, we view death as something that will upset our residents. When one of their neighbors pass, we’re adamant about keeping doors closed and wheeling the body discretely out the employee entrance. As devastating as it can be for us as staff, we hold it together for our seniors, offering support and encouraging strength. We justify their deaths and rationalize them as being timely and fair. I repeat, we justify their deaths and rationalize them as being timely and fair. Honestly, how insane does that sound?

Had even one student passed away at school, I can almost guarantee that classes would be canceled, vigils held, and grief counselors on sight immediately. We would openly mourn the loss together; we’d communicate how it made us feel. Grief for deceased elderly individuals is different – it’s referred to as being “disenfranchised” by society. Disenfranchised grief is experienced when people incur a loss that is not being/cannot be openly acknowledged, publicly mourned, or socially supported. In an effort to not upset or frighten residents, death in elder care facilities is structured to have minimum impact.

As I’m learning and growing in my role, I’m finding that there’s so much wrong with this approach. When we don’t acknowledge our feelings, especially sad ones, they can lead to a myriad of both physical and psychological symptoms. We (residents and staff) can become depressed, isolated, and exhausted. Health consequences aside, downplaying death is flat-out unnatural (and therefore uncomfortable) for us as human beings.

On Tuesday, I drove a van full of my loves to a fellow resident’s wake for the very first time. It wasn’t exactly a typical outing and it’s not something we’ll add to our daily activity calendar, but it was so, so worth the trip – our presence was cathartic, respectful, and normal. For once, we didn’t downplay our friend’s passing or the feelings it provoked. Going forward, there needs to be a shift in our approach: hosting candlelit vigils might be overkill, but we’re definitely done with rationalizing.

Was That Real?

Last week, I had a very special visitor at work: my baby brother, P. Having stopped by for help with his best man speech, he got a taste of how busy my day can be; in the half hour spent in my office, we were interrupted by two department heads, one family member, and a distraught resident from our memory support unit. Accompanied by an exceptional staff member, E was beside himself – his mom had passed away and he didn’t have a ride to her funeral. On top of that, he had nothing good to wear.

Not surprising to my brother, I shot up from my desk. Shannon and I consoled our friend and assured him we would gladly drive him to the funeral – we’d obviously have been attending regardless. I fixed his collar and we tweaked his outfit, confirming he looked just fine and there was no need to worry. She pulled up Mom’s “obituary” and E found comfort in hearing that arrangements had been made and he wouldn’t miss a thing. Though still sad, he calmly returned to his apartment and thanked us profusely.

While unfazed by our reaction, P was confused about what he’d heard. “Was that real?” he asked. Could a man in his eighties have just lost his mom? “To him it was!” we replied. Obviously, E’s mom didn’t really just pass away. In fact, it’s been so long since her death that no such online obituary exists. Thankfully, Google helped us find the names of E’s relatives, whose mention helped to calm his nerves.

I write frequently about the importance of validating feelings. Naomi Feil, who basically grew up in an elder care facility, developed validation therapy after witnessing firsthand how ineffective (and even detrimental) other approaches to dementia care could be. Reality orientation, for example, was widely used for years to essentially bring demented people back to reality – to present orienting information like the current time and place in order to eliminate confusion. It sounds pretty promising until you really consider its consequences: if E is truly convinced he’s in his fifties and his mother just passed, me telling him he’s an 83 year old resident at an assisted living whose mom died thirty years ago would not only make no sense, it’d make me a crazy liar.

Validation therapy, on the other hand, is based on the general principle of validation, or the acceptance of the reality and personal truth of another’s experience (even if it’s not accurate). Its techniques aim to help individuals with dementia be as happy as possible; when their struggle is respected and validated by a trusted person, withdrawal is halted and dignity restored. Though validation can’t repair damaged brain tissue, it can help lessen anxiety. It can foster trust and even love, & that’s real enough for us.

5 Perks of Traveling Solo

It’s hard to believe I haven’t published a travel post in almost one year, especially considering the places I’ve visited in the meantime. Even crazier: the fact that I haven’t traveled solo in almost five. Sure, I’ve gone away alone to meet up with friends, but I haven’t taken a trip for the sake of traveling by myself since 2014.. Until this weekend!

As I reflect on the past two days in Budapest, I figured what better topic to write about than the perks of taking solo trips. Honestly, I’d almost forgotten how many there are! Below is the condensed version of my top five (in no particular order):

1. You can explore at your own pace. I went to the famous thermal baths this morning just after sunrise at 6AM. I was able to beat the crowds & was back in my Airbnb by 8:30. Oh, and then I napped. Had I been with friends (who, by the way, I absolutely love traveling with), odds are we would’ve gotten there at prime time and spent at least four more hours and thousands of forint on massages. I’m really not a spa person, and if traveling solo, I don’t have to be.

2. Similarly, you can eat whatever you want on your own time. This entire trip, I’ve eaten street food; I haven’t sat down at one real restaurant. When with a group, it’s not always easy finding a happy medium when it comes to meals. We’ll often eat family style, too, which means not everyone gets to try what they would’ve liked to order. On your own, you can eat whatever you want, whenever you’re hungry for it (i.e., the donuts I had for dinner tonight).

3. You can rewear clothes (& yesterday’s hairdo) without judgment. In all honesty, my friends and I do this as it is (#judgmentfreezone), but overall it’s easier if you’re by yourself. I may or may not have counted this morning’s swim as a hair wash and gotten back into yesterday’s crop top.

4. You meet more people. Don’t get me wrong, we’ve definitely met people on our group trips, but they’re usually our boat drivers or Airbnb hosts and it’s rarely anything of substance. When traveling solo, however, you’re way more approachable and even likely to branch out yourself since not confined to the bubble that is your group.

5. You’ll go more places. I constantly hear of people passing up bucket list trips because they have no one to join them. That’s the craziest excuse I’ve ever heard. When I first started my weekend trips overseas, I went alone – everyone thought I was out of my mind for traveling so far for such a short amount of time. Had I waited to find a travel partner, I may have never gone at all. *For the record, I was eventually able to convince countless friends to share my crazy, and they haven’t stopped since*

Let Me Live My Life

I like to think of myself as a really laid back person; I’m a simple girl who rolls with the punches and is easy to please. However, like everyone else, I have my quirks. Over the past 31 years, I’ve naturally developed habits and preferences. Nothing unreasonable – I like to sleep in on weekends, I keep my thermostat at ~76 degrees, I hate eating breakfast, and underwear makes me claustrophobic. Obviously I’m flexible, but if I had to go an extended period of time out of my quirk comfort zone, I’d probably start to crack.

This past week, I had three of my evening shift employees come to me with concerns about a resident. Her usual caregiver had been struggling at bedtime, as this nonna (who I’ll call “S”) refused to join her and head up to her apartment from our lobby. Her teammates tried to help, thinking maybe it was that she simply didn’t care for aide but would be more willing with someone else. No such luck, though, and they were both stumped and upset: “How can we leave at 11 without putting her to bed?” While I appreciate their concern and eagerness, I, too, was confused – who’s to say she has to be asleep before they leave? & why? What’s the harm in letting her hang on the couch until she’s ready to head up? There are caregivers in the community around the clock – what’s the rush?

In most senior care settings, sleep and wake times are typically driven by staff. Sure, we ask about preferences, but caregivers have schedules to keep and tasks to complete. Residents are expected to conform to the needs of the community, which means not only that their needs may not be adequately met (or in a timely manner), but also that the setting itself may be a source of distress. As a result, like in the case of S, care is rejected and “behaviors” displayed.

S is headstrong, to say the least. If she’s not happy, she’ll let you f’ing know, and she won’t forget you made her mad. Dementia has a sneaky way of not causing troublesome behaviors, but preventing people from expressing the source of their anguish. Sometimes, it’s as simple as not being tired or a disruption in routine. If one’s reaction seems irrational, put yourself in their shoes: if someone woke me up too early, dressed me in granny panties under my outfit, and forced me to eat breakfast in a chilly dining room, I’d be cranky and uncomfortable. I’d suck it up for a while, I’m sure, but not forever. If, on top of that, no one was honoring my preferences or understanding my requests for change, I would, without shame, pull those undies off and push my plate away.

Situations like the one experienced by my night-owl-nonna arise all the time, and we as caregivers have a few options as to how we can respond: we can fight until someone surrenders, chalk it up to symptoms of the disease and (gasp!) medicate/sedate, or change our own approach. We can step into their world and adjust accordingly. Our front door locks at 9PM and there are caregivers staffed through the night; there’s no reason that S can’t hang until she’s sleepy (or that I can’t sleep in until I’m hungry).

Plan B

In the assisted living world, we often say we’re in the “wellness business” as opposed to the “illness” one. Our approach is more person-centered and takes into account not only physical needs, but emotional and social ones, as well (to name a few). The focus has shifted from diagnoses and limitations to capabilities and what’s preserved. After all, no one wants to be defined by their health needs, and they certainly don’t want to simply exist:

“That would be the aim of good senior care: the aim to live, live, live until you die – that you’re dancing when you die. That would be the dream of most people. They don’t want to sit around and die slowly.”

Mary Tabacchi

The above doesn’t have to be a pipe dream; it’s time to really practice what we preach. Too often, we concentrate on what our nonnas can’t do anymore as opposed to what they can. To worry is natural, especially when it comes to our more vulnerable loved ones. However, if we hone in on that fear and highlight limitations, we only disable them more. Keeping your nonno active in hobbies he enjoys is not only necessary, but with a little creativity, it’s also totally doable.

Maybe your nonna doesn’t remember her recipes, but she can certainly be your sous-chef. The washing machine may be complicated to work, but odds are she’d be happy to help fold clothes. As is the case with one of my favorite residents, the mall is overwhelming, but catalog shopping is both stimulating and fun (for both of us, obv). Rosie’s too big for some to walk, but many help to “watch” her for me and practice all her tricks. Regardless of how the activity’s tailored, what matters most is that it happens:

“I appreciate and sometimes immerse myself in the process rather than only or mostly on the outcome. I like doing things. I like and appreciate the doing. Doing is how I know I am alive, and how I appreciate being alive.”

Dr. Richard Taylor

Life is for the living. Avoid leaving things at “can’t” and be creative with your plan Bs. Offer encouragement, not dissuasion, and don’t ever let the dancing stop.

Mail Order Bride

2018 has been the greatest rollercoaster ride of my life to date. It has also been the year of, without a doubt, the most powerful lessons. I feel so fortunate to have been able to learn so much not only through my own experiences, but from the wisdom of my residents.

Last month when interviewing our Veterans, I had the pleasure of hearing about how one of my favorite nonno’s met his beloved wife. I ended up with five minutes of footage related to the war and 45 on Anna. They wrote to one another for over two years before they met in person, during which time she was engaged to someone else. Her fiancé owned a gas station about an hour north of where she’d grown up, and she was hesitant to marry him and be so far from her parents. Ed, on the other hand, lived 1,000 miles away. Without hesitation, after meeting at Yankee Stadium and getting engaged shortly thereafter, she joined him in St. Louis.

Ed and Anna’s story moved me beyond words (read: it moved me to full blown tears, which you can probably hear in my voice at times!). I felt it was too beautiful not to share, especially considering it was one of my favorite experiences this year. With every curve of the winding road that was 2018, my loves have continued to teach me to fight for what feels right; to be courageous and to take big risks; to be honest about how I feel; and, perhaps most importantly, to never settle in any aspect of your life. In Ed’s case, it was mail order bride or bust.