Sentimental Holiday Feelings

Watching the line dancers doing a Christmas performance it hit me what a close knit community we’ve built here at the continuum care facility. A few tears rolled down my cheeks as I thought about the overlapping Circles of Friendships that have developed since our campus opened. Most of us have found our Tribes---those people in our inner, middle and outer circles. And the best part is that everyone’s Circle of Friendships connect to make this place a warm and accepting place to live despite (or maybe because of) our individual foibles and idiosyncrasies. We’re truly a microcosm of a larger community.

Over the two years I’ve been living here I’ve written extensively about those foibles and idiosyncrasies. As I sat looking around I realized I write more about the funny or annoying aspects that I see in my neighbors and not enough about the endearing and admirable side of some of those same people. Heck, I’d sound like I’m living on Movers and Shakers Row if I wrote about the charity work some of these people do. They don’t just belong to do-good groups, they’ve started them or run them. I found out yesterday, for example,  that one of the guy here has helped several of the waitstaff to get college scholarships, using his connections and writing recommendation letters for them. Now I know why we've lost some of our best waitresses.

Seeing the different facets of people is one of the things I like the most living here. I see people who support causes I hate but I can still like and get along with them. Case in point our resident, most avid Trump supporter knows I like pea soup and she always gives me enough for three bowls when she makes it. She loves to cook and is generous to everyone like that. The woman who called me to rally support against the bombed-out gingerbread house makes beautiful bows for packages and does so for anyone who asks and this time of the year she’s been kept very busy. She and I had some similar experiences---I worked in the floral industry for 20 years while she volunteered making floral arrangements for club banquets and parties---and she is ready and willing to help others along those lines. I am not. I selfishly keep my floral arranging talents hidden under a basket.

What brought the tears on and caused this train of thought to come to the surface was a couple who came in late---while the line dancers were doing their thing. The woman was pushing her husband in a newly acquired wheelchair and came close to barging right through the dancers to the point they had to adjust their positions while her husband tried to get her attention to stop. She’s in the middle stage of dementia and until his recent fall he was an extraordinary caregiver to her. He still is but his row is much harder to hoe right now. Not too long after we all moved in I wrote about the first time I found myself at a dinner table with them. I had a mini melt down because she kept shoveling food off her plate and onto mine. I’m kind of a germaphobic and would never eat something that had been on someone else’s used fork. Especially from a total stranger like she was back then. I didn’t know she was having issues with early dementia at the time and I was trying not to show how freaked out I was. Fast forward and I recently saw her refuse to eat a salad because she was afraid of the croutons on top. It’s so much easier to feel compassion when we can look past our own issues and see where others are coming from.

We have another couple here who is very popular. She’s got Lewy Body dementia and a good sense of humor about it. They go everywhere holding hands. (Actually, all the couples on campus do that.) She was my Mahjong mentor two years ago but now occasionally she’ll ask me to clarify a rule and she’d been playing weekly for 35 years. He’s another great caregiver as well as another avid Trump supporter. Although he keeps his politics closer to the vest than the Trumpter mentioned above. Both of them hate Hillary to a point that it shocks me every time they voice it. He’s also the Class Clown and will do anything for a laugh. At the end of the Line Dancers routine, for example, they were asked to huddle together for a photo and The Clown sat on the floor in front of the line dancers for the photo-shoot and just to be clear he’s not a line dancer and didn’t prance around wearing reindeer horns that day like they did.

We have quite a few couples here who I admire for their devotion to each other. One couple is in their mid-nineties, super sweet to each other and to others, super religious but you don’t want to mention transgender issues around them because she thinks all the public schools are trying to make children change their sex. Boys into girls and girls in to boy for God only knows why we Evil Liberals want to do that. Then there’s the couple we could easily nickname the Complaint Department. Nothing is ever good enough for them---not the food service, not the cleaning crew, not the grounds keepers. I couldn’t live inside their skin but they do hold management’s feet to the fire over some things others collectively care about and wouldn't get done without Mr. and Mrs. Squeaky Wheel. We all have a place in the microcosm.

We have a new couple in my building. I don’t know them well enough to give them a nickname shorter than The Artist and the Eye Candy. They are social and are taking part in various activities, building their Circles of Friendships here which is what you have to do when you're the new kid on the block. Network until you find your Tribes, unfortunately for me they seem to be seeking out other couples for their Tribe. I’d love to get an invitation to see their apartment because I’m told she has an art studio set up in what I use for a den---we have identical floor plans. Her husband is the first man in my age bracket I’ve seen in ages who can take my breath away just by looking at him. Be still my heart. He’s so good looking! And immaculately groomed. A sharp dresser. They seem devoted to each other in that touchy-feely way that lets you know they are still attracted to one another which seems to be a requirement for couples living in a continuum care complex. 

I’m guessing that happy couples are disproportionately represented in places like this. The couples moving into CCC’s want to be sure their spouses are cared for after they’re gone---that’s a fact. Just ask and they’ll all tell you that. But I’m also guessing that husbands and wives who’ve fallen out of 'love' or 'like' don't want to be locked into a CCC. They both probably hope they'll be the last one standing and they don't want their finances tied up in a non-refundable jointly chosen life style. That’s my theory, anyway, based on no research and no anecdotal evidence.

Until Next Wednesday… ©

Photo: The guy at the top is not my new neighbor but they could have been cut from the same cloth. He's an actor, model and photographer named Andreas von Tempslhoff, age 75.

Visiting Memory Care and Fake Bus Stops

Visiting my brother in the Memory Care building is a crap shoot in many ways. You never know what kind of problem---real or imagined---he will be trying to solve. There are common themes in what I’ve nicknamed his Greatest Dementia Hits. One day a visitor might be pressed into service looking for his TV remote, his billfold or his glasses. On another day the mission might be to distract him from worrying that he has no access to his bank or he doesn't have enough walking around money to suit him. The most heartbreaking of all hasn’t happened as frequently lately but there are way too many times when we’d get to his room and he’d have stuff packed up to go home or he'd be obsessing about building a little cabin out behind one of his kid's house.

Wanting to go home is so common in Memory Care places that ten years ago facilities in Germany came up with the idea of putting fake bus stops in their gardens or at the end of a hallway and it works like a charm to calm the resident down. When one of them wants to go home they’re shown the bus stop and one of two things happens: The residents sitting there forget why they are waiting and will wander back on their own, or someone on staff will tell them the bus is late and would they like to have something to eat while they wait for the next one? I can see that working for my brother when he gets upset and wants to leave his facility. One of the things he talks about is catching a bus downtown to see his lawyer or to go home since, "No one will take me!"

According to another article I read there's a controversy on the world stage about the fake bus stop deception in caring for dementia and Alzheimer's patients. Apparently lying to patients is against a code of ethics in medical circles but places that have the fake bus stops report that they can use far less anxiety drugs with their residents. To me, the proof is in the pudding. If it works with out drugging people, then where is the harm? And I'd like to know if those against the deception really think this is on a par with telling patients they need expensive treatments that they know full well they don't need which I'm guessing is the spirit of the ethical law against lying to patients. 

At the dementia support groups here on campus they tell us sometimes it’s kinder and less stressful for our loved ones to just to play along with whatever false idea our loved ones have. When my brother at first would say he wanted to go home we’d tell him he is home which often upset him even more, but the support group taught me the gentle art of diversion. Now I ask him questions like, “What are you going to do with you get there?” “Which room in the house do you like best?” Eventually (but 100% of the time) this works to change the topic. Other times, depending on his mood, I'll agree that living in a place with little privacy isn't ideal but they are only doing their jobs to keep you safe and "you know you can't live on your own." I'll tell him why this place wins awards and how they pass their state inspections with flying colors and describe some of the conditions in places that don't. He'll listen as if the the truth is ringing a bell in his memory bank. They also tell us in support group that it isn't the house they miss as much as it's the sense of security the word 'home' represents. So our goal is often to make our loved ones feel heard. And who doesn't want to feel heard.

But not all visits to my brother are about his Greatest Dementia Hits. We are the two oldest people left in the family and sometimes we exchange some great memories. For example, at our last visit I was reading his schedule for the next week and saw that Ms Angel (the pastor from my Creative Writing Group) was scheduled for a room visit. 

“You see the pastor on Wednesdays?” I asked and I described what she looks like.

 “She pokes her head in the door and asks if I’d like to talk but I usually tell her no,” he replied.

“If you ever do want to talk about religion or God she’s a good one to do it with. She’s very open-minded and accepting of all views.” I went on to tell my brother I didn’t believe in the whole heaven and hell thing but I do wonder if I’ll have a conversion on my deathbed, I joked.

"You tried to get dad to make one,” he said.

“I did not!”

“Yes, you did!” he insisted. “One day I came to visit him [in Hospice] and I found you two both in a circle of people in front of a guy preaching [about getting right with God].”

A light bulb went off in my head and a twenty-three year old memory was illuminated. Then I explained to my brother that I had been visiting when that preacher came to dad’s room and wanted to know if Dad wanted to go to a church service and he answered, “Yes.” I had no other choice than to take him down the hall to the meeting. The preacher was not the comforting, accepting all-paths-to-God kind like Ms. Angel is and I hated sitting there. Fortunately, no group activity lasts longer than 45 minutes in facilities for aging people so I made it through without covering my ears and singing La-La-La. 

My favorite time to visit my brother is when they have musical events. When we were kids we sang together so often that I can still see us standing in front of our kitchen sink as clear as if I'm looking at a photograph---him washing dishes and me drying them. We also sang on car trips---long and short both. Years later Mom told me she made us sing because she knew if we were singing we couldn’t fight.

They have a good music therapy program in the Memory Care building and one of the musical events this summer here on campus featured a trio of women dressed like '50s car hops and they sang a lot Andrew Sisters and other popular songs from WWII. My brother and I sang right along with them. (It's amazing how the mind can retain lyrics learned as a kid but it can't retain how to use a phone or a TV remote from one day to the next.)

Siblings share a unique set of memories and once a sibling is gone a whole chunk of ourselves goes with them. Who else can you ask about a foggy memory in your childhood? As adults my brother and I didn't run in the same circles or even knew what made each other tick, but there is no one else left on earth who has known me my entire life, so I'm happy for the opportunity to renew that relationship and build some new memories, however limited dementia makes it.

On an OCD note, one of the hardest parts about visiting the memory care building is I often come back plotting how I’d arrange the furniture in one of those rooms if and when I get moved on down there. What pieces would I take from my apartment? What would I hang on the walls? Will my family include me in the decisions? I’ve even thought about making a list but decided I didn’t want it to become a self-fulling prophecy as if I'd automatically end up down there. With a decline in physical abilities we can stay in our independent apartments with paid caregivers help a couple of hours a day. However, if dementia becomes a threat to ours or other peoples' safety that's the trigger point that forces us into the memory care building. And let's face it, if that happens I might not even remember why I wanted a list of things to take with me. If only I could see into the future I could be better prepared. But "it's a mystery" as my brother has been saying to me for the past 50 years when ever I'd ask a question that didn't have a black or white answer.

Until next Wednesday. ©

 

Easter In Geriatric Land

The weeks leading up to Easter here at the continuum care complex were slow and boring if you’re not a Christian who took part in all the related activities that goes on between Lent and Easter---Ash Wednesday, the faith movies and book discussions, doing the stations of the cross and the Good Friday service. It’s like there’s an alternate universe and the one I’m living in had only three Easter related things on the schedule: Fat Tuesday, an Easter Buffet and an Easter egg hunt for grandchildren and great-grandchildren.

Easter weekend was mostly fun though. Friday my niece brought her three youngest grandkids to the Easter egg hunt that took place inside the fenced garden park in between our assisted living and memory care buildings. It’s a pretty area about the size of a half a football field. It was a warm, sunny day just perfect for the residents to sit outside in the center of the park and watch the kids. The kids from my family made quite the haul, the youngest finding 28 plastic eggs filled with candy. She’s four years old and her mom asked her to go give some of her eggs to the smaller kids in attendance and she did without a whimper or protest. She such a cute little girl. When she was in the car ready to leave she said to me, “It was nice to see you again, Aunt Jean.” I’ve seen this little girl less than a dozen times in her entire life---they live far away---so I was shocked by her words until I realized her mother had said them to me just a few minutes beforehand. Still…

Two days after the hunt my brother was still obsessing that his daughter lost her grandchildren and is trying to cover it up and he was going to call the police on her. We all know you’re not supposed to argue with people with dementia but that’s easier said than done sometimes. The two of them fought over the phone a couple of times, so I went down to his building, hoping I could calm him down and get to the source of his dilution. I did the latter. Apparently when we were all sitting in a circle watching the kids my niece made a comment about not seeing the kids while they were all looking for eggs and that was enough to accuse her of losing the kids and driving off without them. No among of me telling him I saw the kids leaving in the car calmed him down. Me trying to explain there was no way for them to get out of that park to get lost because you need a code to get in or out of the area calmed him down. “I heard her say it with my own ears!” he told me before he accused me of always taking her side. “I’m not taking anyone’s side,” I replied. “I’m trying to explain how you’re taking a grain of sand and building a mountain out of it.” And for the first time since he’s lived in the CCC I felt myself getting mad at him. Breaking things down into logical bites wasn’t working and I knew better than to expect it would. He isn’t capable of nuanced thinking, of understanding my niece's off handed remark in an enclosed garden isn't the same as saying it in downtown Chicago with tears streaming down her cheeks. Still, I've always thought of myself as a peacemaker when things are heating up around me, of the person who could deescalate touchy situations. In this case, I lost my patience and walked out of his room.

I don’t know which is the worst fate of Senior living---losing your mental sharpness or your physical mobility. At the Easter buffet (served on Friday) I was seated across the table from a guy who had an operation on his neck and he was in a clam-shell brace from his neck to his belly. He’s one of my favorite residents here and it was his first time eating in the dining room since the surgery. His wife (I believe) made a mistake bringing him there and an even bigger one feeding him like a baby bird while his friends came over to welcome him back. I could read the growing anger in his eyes as she’d say things like, “How about a carrot? You like carrots.” At one point the kitchen manager came out, stood over him and forked food into his mouth so his wife could eat. After living with a guy who was non-verbal for over twelve years I got pretty good at reading body and facial language and I read “thoroughly embarrassed and extremely angry” sitting across the table that night.

On holidays they never serve any meals here at the CCC and I got an invitation to have dinner with four other ladies here and all I had to bring was a bottle of wine. My kind of invitation since I never did cook well or often enough to have confidence in what I’m doing. (For years, my contribution to holiday meals was a marinated four bean salad. If my mom and sister-in-laws were alive today I’d apologize to them all for me letting them do all the heavy, holiday lifting.) 

All four of these ladies I spent Easter day with are liberal democrats and three of us play Mahjong together so I’m thinking it’s time to start calling them ‘friends’ instead of fellow residents. We had plenty to talk about. Three of the ladies are also in my book club and we are reading The Handmaid's Tale. Given what's going on in our country right now regarding woman's reproductive rights, it should be an interesting discussion. ©

 * Photo at the top is part of the park where the Easter egg took place.

 

Eavesdropping and Destiny

I like to imagine fiction writers are like sponges. Everywhere they go they are eavesdropping on the conversations around them, soaking them up and filing them away. As a family member to an author you’d have to be careful what you share because you’d never know when your Word Soup will feed one of their characters and words you've said will appear in print. If you read enough author interviews you’ll see the ubiquitous question of what inspired such and such a character or storyline and they’ll confess to what I’m saying. The elements of fiction can come from anywhere and everywhere. The book I just finished about the all girls filling station was inspired by one sentence the author's aunt said ten years before Ms Flagg started writing it.

No one would ever get inspired by my conversations. Yesterday on the phone with my brother (who lives in the memory care building of my continuum care campus) he asked me if I’d give him a ride downtown to buy some stamps. “I’ve got stamps,” I said. “How many do you need?” “I don’t know,” he replied. Then he served me a word salad and long story short I put my dementia decoder ring on and figured out that he didn’t want a ride to the post office, he wanted a ride to the Secretary of State’s office to buy new license plate stickers for his truck. He remembered his birthday is coming up and that’s the yearly marker when people in my state have to renew our license plates.

I wasn’t sure if my brother knew or not that his truck was sold so I played along and told him now days you have renew your stickers online and one of his daughters would have to help him with that. I did ask at one point, “I thought your truck got sold,” and he replied the lawyers were holding that up.” Sometimes he’s totally lucid with the bits of information people give him and the next minute he’s back to worrying about his truck that, in his mind, is “sitting in the street” waiting for a cop to ticket it the minute his birthday comes around. Trying to transition to a new topic I told him his birthday is nearly a month away, and he's got lots of time. “It will take a month,” he raised his voice to say, “before I get someone to take me to the post office!”

That same day at Mahjong our conversation was so fast moving and silly a person would have to had recorded it to get the belly laugh benefit of eavesdropping on it. But I’m pretty sure the humor of it is one of those things you’d have to have been there to understand. For example, at one point our wall of titles was short and across the table from me and when I went to pick one up I could barely reach it. “I suppose I could push that wall out more,” the woman across from me said, and without missing a beat I replied, “You could have but you didn’t.” And that as all it took for the four of us to laugh so hard and for so long that I was red faced and couldn't talk, another woman confessed to peeing her pants and a third had to walk away to get her composure back. When we finally gained control of ourselves, someone said, “I don’t even remember what we were laughing about” and that started us laughing all over again.

The rest of the game was full of silliness, of calling each other out for breaking rules and others offering to let it slide if they'd slip bribes under the table. We could never play in other Mahjong venues, especially in places where they play for money, because they take their games seriously and don’t talk while it’s going on. Thankfully the woman who introduced us to the game and trained us all has a great sense of humor and I’m pretty sure she wished she’d had been playing at our table that afternoon instead of with a table of newbie players. Some of the newbies are so slow, it’s like watching the proverbial paint dry. 

A woman I know from going to the monthly dementia support group happened to be observing that day---people do that when they think they want to learn the game---and I felt sorry for her. She was so confused. She and her husband live here in Independent Living as do at least four other couples where the one with dementia couldn’t stay if she/he were living alone. Yesterday I found one of the ladies with dementia in the lobby of my building, lost and clearly panicked because she couldn't find her apartment. So I took her up the elevator to her floor and delivered her to her husband. He’d been taking a nap and he didn’t know she left. 

The spouses in these “mixed couples’ remind me of my caregiver days…in the last year or two before Don died. There's a certain kind of desperation that sets in as you try to hold onto the threads still left of your loved one’s mental or physical health. In the back of your mind, you know it’s hopeless but you’re too scared to admit that out loud. So you put on your caregiver track shoes and run yourself ragged trying to out-pace your destiny. Most of us do the best we can for as long as we can even though practicing the Golden Rule takes its toll. ©