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. ©

 

The Lawyer and the Ladies

I had my legal i’s and t’s dotted and crossed ten years ago. Right after my husband died I went to a lawyer to get a will and the powers of attorney for health care and finances drawn up then promptly put them in my filing cabinet and forgot about them until my dog died before moving into this continuum care complex. There were provisions in my will for Levi’s care that I crossed off the will, signed and dated the change, then back in the drawer the estate planning notebook went. But in recent weeks, it’s bothered me that the lawyer back then said my estate was too small for a trust and my heirs would be better off to let everything go through probate. With my brother’s recent move into the Memory Care unit here on campus I’ve watched my nieces dig into the weeds of their father’s trust and realized how much easier it would for them to “manage me” should my brain not keep up with my body’s longevity if I had a trust.

The lawyer they used practices elder law and has one hour free consultations. So in I go with my notebook for review and my list of assets and income and I let him school me on how trusts work. He used a white board to draw on and let me just say that the guy is so darn cute I had a hard time concentrating on what he was saying. He’s not just cute like a puppy dog cute. He could easily be a print model or movie star. Think Brad Pitt in his thirties. Mr Hottie Lawyer looked like he just came in from doing manly things like chopping wood or skiing down a sunny slope---anything that could put a healthy glow of sun kiss in his perfect skin. He was wearing a cream colored dress shirt under a melon colored, pull over sweater with a pair of sandalwood colored dress pants that matched the color of his prefect hair which was carefully styled to look like he just got out of bed. And when he smiles it's the genuine kind that engages his sparkling eyes and gives you a flash of perfect teeth. And if all that isn’t enough to kick start someone’s dried up ovaries, he was down to earth and has a friendly personality. When I got home I texted my youngest niece about the fact that I have a trust being drawn up and “Boy, is that guy cute.” She texted back that when she and her sister left his office recently, her sister asked what she thought of the guy and my youngest said the first words out of her mouth were, “Boy is that guy cute!” 

My new lawyer is on the board of directors of another continuum care complex here in town and he understands how they work and what people need in the way of assets to get into them, etc., etc. He surprised me when he said that I have an above average estate from what most others living in places like this have. So I guess I will quit my Blue Collar worrying about going over my monthly food allowance or buying something I could do without from a late night binge shopping on Amazon. My latest hot purchases were a third pair of compression stockings made out of bamboo and some tennis shoe cleaner. But you should see my ‘Wish List’ of stuff. When I finish this post I'm going to buy the Christmas sweater on the list. People here are really into holiday dressing. We have a Halloween party coming up on Monday with a special buffet and we’re supposed to wear a costume. I don’t like Halloween---never have as an adult---so I will not be wasting money or time trying to come up with something to wear. I might get a dollar store headband, if the mood suits me over the weekend.

When this post goes live on Saturday and you’re reading it over morning coffee I’ll be sitting out on our piazza where a bunch of kids in costumes from a near-by church school will be stopping by to trick-or-treat the various buildings on this campus. I hope they get my brother out on the deck to see them. The person in charge of his transition say he’s doing well adjusting, by the way. Still asks my youngest niece about going home, but that's to be expected this early on.

I was walking down by the lake a couple of days ago, in front of his building, and I ran into a woman who left our independent living building and was moved into the Memory Care building where my brother is at. She was with her daughter and she looked fabulous, like the move took all the worry out of her. She was constantly walking around our building with a sheet of paper, afraid she was going to miss something on our schedule of classes and she would get kicked out. She did it one too many times in the middle of the night, fell and that was the end of her independent living. When she came home from rehab for the injuries due to the fall she came home to a room in Memory Care. She seemed happy and contented and said to me, "I hear I live in the dementia unit now," and I replied, "I don't know about that but their memory care program has won state awards." I didn't want to use the 'D' word in case she was fishing for information they hadn't told her or maybe they don't use that word in that building? Her daughter looked like it wasn't the first time her mother had trolled that 'dementia line' out and she was getting ready to deliver a canned speech that went something like, "Remember Mom, you need to be where you have some supervision since your fall." 

We said our goodbyes and I'll be seeing you agains and I went back to daydreaming about my new lawyer and his two perfects kids and pretty wife. Yes, I internet stalked him when I thought about using his photo with this post. But I decided he and Brad Pitt really do look like they came from the same gene pool, so you get my celebrity crush instead. He's been my celebrity crush since he did the movie, A River Runs through it. It's still one of my top five movies of all-time. ©

 

The Move-in and my Personal Woe-is-me Day

I woke up at 4:30 and couldn’t fall back to sleep so at 5:30 I got up, had some cocoa and here I sit in front of the computer screen. I was not surprised. I went into my bedroom last night around 9:00, selected a Netflix movie and promptly fell into a deep sleep by 9:18 (according to my sleep app) until the ending credits when I woke up long enough to turn off the TV set. My usual pattern is to watch a movie until around 11:00 then take two Melatonin gummies and turn the TV off at midnight. It had been a long, busy couple of days for the mind and body. My two nieces were in town setting up their father’s room in the Memory Care building on campus and I was there for awhile and they were here for awhile. I also played Siamese Mahjong with my instructor, the first time we’d attempted it and we were both on our phones reading directions. How did we ever live without our palm sized libraries of knowledge at our fingertips? Two of our regular players were gone---one at her husband’s death bed in our hospice building and the other on a color tour, thus the need to learn to play Mahjong with just the two of us. I’m sure we both generated a bunch of new brain cells while we played a game that is complicated enough with four of us at the table. We were essentially each playing for two. I love that game. Mahjong is full of crazy rules, and is a combination of skill and luck to win.

At dinner I ate with four others and we made arrangements to make it a standing Wednesday night date. I’m dubbing us the Secret Society of Liberal Ladies. We talked freely about the upcoming midterms and who to vote for or not. We talked about the Proposals on the ballot including women’s reproductive issues. We cannot believe after 50 years of living under Roe vs Wade that we’ve come to this. Here in Michigan we even have a Trump backed state senate candidate who once started a think tank called the “Society for the Critique of Feminism” where he put forth the argument that women shouldn’t be allowed to vote or work outside the home, a real Handmaid’s Tale kind of guy’s utopia. Now he’s claiming it was satire but how can voters trust a guy who licks Trump’s boots down to the stitches and seams? 

I’ve never been inside our Memory Care building---been to several outdoor events---and my brother's room is very nice. It’s been newly remodeled with fresh paint, new fixtures in the bathroom, new carpeting and brand new furniture, all in a what I’d call a winter wheat color. But it’s a thirty year old building with narrow halls and a layout I can’t figure out yet. They are remodeling the whole place, including tearing down a wall between two lake view common rooms and that will be entertaining for my brother to watch. He’ll want to help. I told our maintenance man who was there doing last minute stuff in my brother’s room that he’d better keep an eye on his tools when Jerry is around. He likes to take things apart and can’t put them back together again---his latest was the furnace. 

It's both sad and otherwise, watching my brother get moved from living in a big house to a single room with a bath, bringing in just clothing, some wall decor, a candy dish, a few place mats and throw pillows. I couldn’t help thinking someday I could be moving in across the hall way and my life would boil down to a handful of possessions. What would I want on my walls, on my lounge chair? God, I’ve always been a long-range planner but do I really need to make a list in my head of what I want my nieces to grab from my current apartment when/if I get moved on down the road? Apparently I do/and did.

I’m having a ‘Be Sorry For Myself day’. Taking a shower one-handed was tougher this time compared to the first hand surgery because of the way my shower stall is set up and putting on my socks made me want to cry for all the times my husband struggled doing it one-handed over the twelve and half years after his stroke. When I had my other surgery it was summer time and I didn’t have to put on socks. I helped my husband if we were in a hurry or he got particularly frustrated but most of the time he did it himself and I’m going to break my computer screen if I don’t find a way to kill a pesky little gnat that seems to follow me around. He was hanging around my coffee pot earlier. Every where I go, there he is like he thinks we’re the Bobbsey Twins. When he gets around my face I’m afraid I’m going to snuff him up my nose or give myself a black eye trying to swat the devil gnat. The meme at the top is the second biggest question of the day. 

The first being how did my brother handle it when he was introduced into his new living quarters today and figured out he isn't going home from the Covid rehab where he's been gaining strength after a hospitalization with the virus. I'm on pins and needles waiting for a report. His kids are rallying around him in a show of unity for the decision they've made and I won't walk down there to visit until I know how things are going. I'm hoping maybe by the weekend but it could be longer. Their patient liaison told the kids it generally takes a month before patients settle into the fact that they aren't going home again. It was the right decision at the right time, but that doesn't make it an easy one. 

Now I'm off to the pharmacy to pick up a third prescription for an UTI that has resisted the first couple of antibiotics the doctor gave me the week before my surgery. I'm so sick of peeing sixty thousand times a day that I'm about ready to declare the UTI a winner and lay down and die. I'm allergic to that 'shotgun antibiotic' that kills everything possible growing in your urinary track so they had to grow a culture with my pee to come up with this last (hopefully) medication which should have me feeling better soon. But on the good side of life, I'm typing this is real time. The hand still has some swelling but so far so good on keeping infection out of the stitches. ©

Little Fish and Dogs in Tutus

I visited my future today.The park attached to the memory care building here at the continuum care complex was having a costume parade for dogs, and we residents from independent living were invited. The park is actually created by two C -shaped buildings with a view of the lake at one end and a view of our tree lined road on the opposite end. It’s a peaceful place with tables and chairs and a covered patio at the very center that is used to serve drinks and snacks, and if you don’t see the high iron fence keeping residents in you’d think it was a lovely place to while away an afternoon. It was my second trip to an event at my future step-down residence on campus, should my memory get to the point where I need 24/7 supervision so I don’t go wandering off in the night wearing just a pair of snow boots and my watermelon colored lipstick. 

On my first trip to my future I joked that I was afraid to go for fear they’d let me in the coded gate and not let me back out. On this second trip it actually happened that I had to hunt down the gatekeeper so I could return to the path by the lake that took me back to my own independent living building. But in between coming and going I spent my time people watching. There was one old guy in particular who looked like a Tim Conway character from the old Carol Burnett  Show. White hair standing out in all directions like Albert Einstein, a shawl-collared sweater with only the top button buttoned and his old man belly and belt on full display as he shuffled along. Then there was a woman who at first glanced looked like she was carrying a new born baby but it turned out to be one of those expensive, custom-made dolls. And I’d hated to be the aid who had to take it from her arms to help the woman get dressed or undressed. But the most delightful, laugh-out-loud thing I was saw was an 80 pound dog dressed in a large pair of purple wings and wearing a tutu and she was squatting to pee with her back to everyone. I’m sure she thought if she couldn’t see us, we couldn’t see her. It would have been a prize winning photo if I’d had a camera with me. The tutu fanned out in a perfect, pink tulle circle.

Aside from the twenty some residents sitting in the park I saw something else. Something somehow sweet and comforting. The staff who was attending the residents were respectful and kind and cheerful but not patronizing the way I’ve seen in some nursing homes I’ve visited in my past. Another visitor was there with a dog and both her mother and a father lived in Memory Care and one of the staff thanked her for always supporting their Life Enrichment events. She had found some luggage tags that you could paint on and she offered to make name tags out of them for other residents with walkers because, those buggers all look that same. She had a ten-ish year old boy with her and what a wonderful mother she was---modeling kindness the way she did. And what a wonderful daughter, caring enough to want to make the staff’s lives easier by making walker name tags for everyone. 

As I sat there taking it all in I thought about a comment one of the guys from my part of the campus said when we went down to the park to try to dunk the CEO and other staff members into a dunking tank. He said, “If I ever get moved down here, just shoot me” and this time I thought about how if you were judging by looks alone, he’d fit right in. He might have more sparkle in his eyes and he might be a fuss-budget about changing his shirt if he gets a stain on it---stains are the mark of an old person who is loosing it, according to him---but really he’s fooling himself if he thinks he’d be out of place. The line between them and us seemed very thin to me. Granted, there were probably others inside the buildings who couldn’t come outside, who couldn’t enjoy a cup of lemon-aide and some Pepperidge Farm Goldfish crackers. But we’re all only a TIA away from our brains saying we’ve had enough of taking care of business. Rather than be put off by one of these co-mingle events I’m at peace knowing I’ll be in a safe and pretty place to stay when I can no longer find my way back from the bathroom when I get up in the middle of the night. 

Walking home it dawned on me why the two times I’ve visited my future they served those fish-shaped crackers out of the biggest bags I’ve never seen in the stores.They practically melt in your mouth and are safe for little kids who can’t possibility chock on them…and neither could senior citizens with swallowing issues. 

But there's so much to do before I have to worry about memory care including I'm excited about the creative writing group I'm spearheading on campus. Our first meeting is coming up soon. The mission statement is written, the agenda is set and my first assignment is ready to go. ©

Not a good photo but is shows the fence around the park from the road

 

The coded gate with the park beyond the fence, also take from the road