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 Siblings and our Parents

My brother is settling into Memory Care quite well although an aid there just told me he thinks he’s in a hospital. I’m not surprised because on one of my visits he asked me if he was sick and dying because, he said, people keep coming into his room in the middle of the night to check his back or his lungs. I happened to run into the director of the dementia activities program a few days after that conversation so I asked her what might be going on at night to give him that idea and she told me with some patients they check to see if they are still dry and need to be walked to the bathroom. Mystery solved. 

I learned with my dad’s dementia that sometimes what we thought was an illusion in his head was actually real. For several weeks Dad claimed he had a chipmunk in his bed and no one believed him. That is until on a visit I sat in the living room and watched one come out from behind a piece of furniture and run the full length of his house and go directly into my Dad’s bedroom. This is another good reason to take the advice of a dementia expert I heard speak recently to never to argue with dementia patients. Once in awhile they’re right (my words and conjecture, not hers). But she did say dementia patients are losing their language skills to make what is going on with them clear to others. (I feel that happening to me when I talk and it’s downright scary.)

Dad also had what we thought was a disconnect with reality when he kept complaining that he couldn’t sleep at night because “there were people in his living room having a party.” Long story short my brother put a timer on his TV and that ended the “parties.” My brother and I spent five years problem solving at dad’s house to keep him safe and happy and to this day I’m proud of what we accomplished. Those years brought some of the best memories of bonding with dad but also some of worse fights between my brother and me. As with most kids in that stage of life---trying their best to care for an aging parent---we were under a lot of stress and after Dad passed it took a year before the tension between my brother and I dissipated.

After my mom died in 1983 I spent a few years gathering stories and memories from everyone in my family. It was my way of grieving her. Her death was tragic and painful because it was spiked with preventable missteps in the medical community. A doctor afterward told me having all your blood slowing seep out of your organs into your body cavity is one of the most painful ways to die and the fact that her doctor told my brother and me that she was just an old woman looking for attention, that there was nothing wrong with her, is another reason why when an older person asks a question like my brother did, I try to understand where it’s coming from and answer honestly. For example, I told my brother the day he asked me if he was dying that his daughters would have told me if that were true and they hadn't said anything remotely like that to me. The "pause and pivot to an alternative topic" approach is the recommended method of handling much of what dementia patients obsess about but I think/hope I'm still good enough at reading my brother to know when to use it and when to give him a red meat answer.

Back to Mom: It wasn’t just the weeks of pain Mom went through that were preventable if she’d been taken seriously but the ambulance that picked her up the day she died caught on fire on the way the hospital, something Ford Motor who built that model ambulance knew was happening on trips longer than x-number of miles. We didn’t take part in the class action suit that followed a bunch of fires like what delayed mom's trip to ER but the last day to decide whether or not to join it was one of the hardest days of my life. But I had to let go of the pain of losing her and a lawsuit would have kept it going. 

Complying the family stories finally gave me closure. And all those stories and memories I had gathered I pulled together and I printed out old school with my computer. I punched holes in the pages and bound all 125 pages of single spaced typing together plus sections of photos, hand writing samples, poetry by family and favorite recipes. I hadn’t read the book in decades but yesterday I took my copy down to my brother’s building and read him the first chapter. My plan is to read to him once a week and if my first reading is any indication it’s going to be a warm and rewarding experience for both of us. 

In the first chapter are lots of quotes of things my dad said and my brother shocked me when I’d start reading a couple of them and Jerry would finish them. "How did you know that?" I asked at one point and he said, "Dad told that story about grandpa a lot." As a read, I’d stop occasionally so we could talk about whether or not he remembered things like being in charge of crushing tin cans to put out to the curb during WWII and most often he did and he’d add a little more color to the story than what I had written on the pages. All and all reviewing our lives this way is going to be a bonding experience. I should probably run the idea past the director of the dementia activities program before I get too far into the project. But I’m pretty sure it fits in perfectly with what they are trying to accomplish in Memory Care. Fingers crossed. ©