Tag Archives: caregivers for memory loss

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the man we were dealing with

When I first suggested to my father that he keep a key hidden somewhere outside his house in case he locked himself out, he refused, saying that someone would discover it and rob him. Old and vulnerable, leaving a key outside was too great a risk for him. But truthfully, by the time he really needed to have a spare key stashed somewhere; he wouldn’t have remembered where it was. Yes, people told us to put a key on a cord that hung around his neck, or around his wrist, or attached to his belt or belt loop – all great suggestions, IF he’d remember to do these things. But that’s the catch…it was his memory that was part of the problem.

Not to mention that he hated to have things ON him. He’d get rid of anything like that, within minutes, and if he couldn’t unfasten it, he’d cut or rip it off. When I first saw him yank something off his wrist, I realized that he and I were not so different. I could not stand it either and smiled to myself wondering if, at his age, I would be like him. When I was a little girl I so wanted to have a nightgown with lace edging on the sleeve-hems, but when I felt the constriction from the elastic bands in the ruffled cuffs, I found a scissors and cut the elastic off – I couldn’t stand the way it felt.

That first time when I suggested to him that he keep a spare key outside, he said he didn’t need it. I asked what he’d do if he locked himself out and with no hesitation he replied with a sneer,

“I’ll bust the door down.” He was true to his word.

I noticed he did not say he’d go across the street to ask the neighbors for help. He was close to 90-years-old at this point, and busting the door down continued to remain his best, his only solution. That’s the man we were dealing with.

The first time he locked himself out, he dragged the old paint-splattered, five-foot aluminum ladder from the garage in the backyard around to the open, kitchen-window in the front of the house. He was planning to climb through that window but it was a little more complicated than he anticipated. There was a flower box on the outside of the window he’d have to climb across, the window had a screen on it and it was a double-hung window with only about an 18 x 24 inch opening so he would have had to do some pretty fancy yoga to fit through it, and finally, the window was above the kitchen sink; that’s why he needed the ladder to reach it. If he’d been successful, and been able to somehow get through the window…he would have landed right in the sink. Maybe if he was sixteen, or thirty, or even fifty-years-old he could’ve pulled it off, but NOT at age NINETY. Luckily for all of us, he didn’t have a chance to get too far.

“Ellen, YOUR FATHER IS STANDING ON A LADDER OUTSIDE THE KITCHEN WINDOW. I think he’s locked out. Barry’s gonna go help him.” That’s the phone call my sister received from Pam. She and her husband Barry lived across the street from dad. These dear neighbors had a spare key to his house, and they weren’t the only neighbors that had been willing to take a key, “just in case”. Barry somehow got dad off the ladder; an act I wish I’d been able to witness. With the distraction of Barry seemingly appearing out of nowhere, dad never even noticed that he had an extra key.

The second time he locked himself out he took a different approach. Back in the 60’s he’d been involved in remodeling the screened-in porch at the rear of our house into a den. I’m sure that he’s the one who chose a hollow-core back door…less expensive, yes, but also less sturdy than a solid door. Forty or so years later, he had that fact stored away somewhere in his mind: the back door was hollow-core and therefore a door that he could bust down…with the right equipment.

Dad went into his garage and found an iron crowbar, and somehow dragged it to the back door. He weighed 116 pounds by this time in his life, so the real miracle is, he picked up the crowbar and bashed the backdoor at a height that allowed him to reach through the hole and unlock the door. We were, of course, worried about his safety and his judgment, but I have to admit we were also quite inspired by his will. Unstoppable.

My sister and I went through the garage after the “break-in”. We poked around through the layers of discards on the shelves and removed all the tools, and everything else we could imagine him using as a tool. Garages tend to be a kind of modern-day archaeological site and ours was no different. There were tools from when dad did the remodel in the 60’s, and I’m guessing that’s the category the crowbar fit into, there were wedding gifts from my mother’s parents circa 1947, that dad never liked but tolerated when my mother was alive, like a horribly tarnished, silver-plated champagne bucket which is about as unlike my parents’ life-style as you could ever imagine. There were a series of broken microwave ovens although the most recent one wasn’t actually broken…my sister just told dad she broke it so she could get it out before he burned the house down. He’d mistakenly used an aluminum pie-plate to heat food in and then entered the cooking time in hours instead of minutes. That was another very close call that also involved a phone call from Pam.

There was an old shed out behind the garage that I knew he didn’t go into any longer – at least that’s what he told me. He’d asked me to get something out of it recently, saying that the brick path was too uneven, now that the gnarled tree roots were as much above ground as below – said his eyesight just wasn’t good enough. Now that I think about it, maybe that was just a ploy to get us to put all the tools in one spot. Well, we put all the tools and would-be tools back there, way in the back behind a bunch of old window screens, thinking that now he would be safe.

As his judgment became more convoluted, as his behavior became more risky, we continued to increase the hours that the caregivers spent with him, which was no easy task. He fired them almost every day and told them to “Get out! Go home!” and worse, I’m sure. Those two young women were amazing with him – they really understood his nature; we learned a lot about dad from them. They’d get their things, leave by the front door, and then circle around to the backyard. They’d wait whatever amount of time they thought it would take for dad to forget that he’d fired them…and then just enter through the back door like nothing had happened.

When I heard they were doing this, of course I was impressed, and so grateful for their dedication and resilience – but I was also concerned for their safety. I reminded them just who they were dealing with: a proud, fierce, and rowdy old man who was bound to have who-knows-what hidden around the house to protect himself against potential intruders. At various times I’d found a baseball bat and a golf iron between the wall and his nightstand. I warned them that they had to make sure he knew they were in the house once they returned from their banishment. His hearing and eyesight were failing and it’d be dangerous for everyone, if he were surprised by their presence.

After this “break-in”, we knew we were running out of time. My father was a force of nature – he would not be controlled. But we kept trying. We began to look around at possible housing options and at the same time couldn’t imagine him living anywhere but his own home: it’s where he’d lived for a good chunk of his life…sixty years. But there were other reasons. Yes he was old and weak, but he was still quite healthy, physically. He walked a one-mile round trip back and forth to the donut shop once or twice a day, or three times if he forgot he’d already been. And he’s the guy that broke through a door with a crow bar at age ninety.

I didn’t realize how much of a problem his good health, physical strength, and shall we say, creative problem solving skills, were, until we started visiting various residences. First of all, the ratio of women to men in this population is skewed – women outlive men by a huge factor, so they’re primarily set up for dealing with women. As a general rule, women of his generation were not thinking about busting down doors or climbing through windows. Dad grew up in a destitute neighborhood in Detroit during the Depression, and literally had to fight to survive; he’d learned to try anything and everything to accomplish his goals. Those instincts were alive and well in his psyche.

He was also used to walking a lot, every day. Many of the residents were wheelchair bound, some bedridden. It was hard to imagine how they could handle dad. One of the most disappointing and frustrating parts of all of this was that not one residence ever said that they could not handle him. We were VERY honest with them about his behavior. They always told us they were capable of taking care of him, and keeping him safe. There’s no way they could accomplish this and I know now that the system is simply not able to handle someone like dad. We would have had to hire a caregiver to be with him all the time, on top of paying the fees that everyone else paid. We didn’t have that kind of money…but they never even suggested it. We began to see the chasm between what dad needed and what any of them could offer.

And then there was television. He and my mom had given up on TV years ago, and by now, his eyesight was so poor he really couldn’t see what was going on, anyway. Every once and a while I’d say, “Dad, the Dodgers are on tonight, wanna watch the game with me?” First he’d just say, “Are you kidding? The Dodgers stink!” which they did at the time. But finally he admitted that he couldn’t make out anything on the screen. Dementia made television even more bizarre, and sometimes he would describe to me what it looked like to him…and we’d have a good laugh, but it had not been a part of his routine for many years. He just wasn’t the sort of old man who would settle for sitting around watching TV all day. His younger brother at age 88, still loved watching his favorite shows, and he’d come over mid-day and turn them on as soon as he arrived; right away dad would holler, “Turn that crap off!”

Most of the housing situations we looked at assumed that people liked TV and they used it just as some parents use it – as a babysitter. There was no way that would work with dad. Each time my siblings and I would go on an excursion looking for some place to move him, we’d come back utterly discouraged…he just wasn’t at all like the kind of people they were aiming for. In statistical terms, dad was an “outlier”…he was way outside their “norm”. We loved that about dad…loved that he was his own person, and boy was he. But now, that was revealing itself to be a major problem.

Sitting in the backyard with his eyes closed, dad would feel the sun on his face and listen to the sweet song of the Mourning doves – it was his oasis – and a respite from the increasing confusion that he faced whenever he went out into the world. Both his brothers spent the last years of their lives in apartments. He could never imagine that. Dad loved his home; he loved everything about it. It was his old friend, and now that mom was gone, it had become his closest old friend.

We knew this.

Once again he’d locked himself out. This time Pam’s voice on the other end of the line was frantic. She said she “just happened” to look out their kitchen window to see my father reaching his hand THROUGH a BROKEN WINDOW to let himself in at the front door. Her angel of a husband ran over and by the time he’d arrived, dad had already opened the front door. There was not a scratch on him. The hammer that he used to break the window lay eerily on the porch at the edge of the door, below the jagged window. Broken glass was strewn about, and inside, shards glittered all across his beloved couch. Barry carefully removed all the glass and taped up the window. We were running out of time. All three of us kids knew it. His caregivers knew it. Our neighbors knew it. Did dad know?

He must have been alone…where was his caregiver, we wondered? On this particular day, dad had already fired her several times by the early afternoon. Los Angeles was having a horrible heat wave and she couldn’t bear the thought of going around to the backyard again, which was in full sun that time of day. She instead walked around the corner to the drugstore where it was air conditioned, and got something cold to drink. She was not gone long – but long enough. She’d left him unsupervised…but what could she do? He’d already kicked her out too many times and it was over 100 degrees outside. Our homemade eldercare-system was unraveling.

When we heard the whole story, we knew that once again, one of dad’s angels had been looking out for him. He could have been injured, he could have slit his wrist and bled to death. We got the message LOUD AND CLEAR. Maybe you’re thinking this is the message we got: we had to move him out of his house – but that was still inconceivable to us. Instead, we concluded that we had to come up with a system that insured that his caregivers were present 24 hours a day. With hindsight I can’t believe that we didn’t see this as the last straw, but moving him out of his house continued to be a haunting image that seemed impossible.

We were able to cobble together a 24-hour presence of caregivers. It was a daunting job for those dedicated young women and for my sister who at that point was in charge. After my four-year stint in Los Angeles I distanced myself from the day-to-day activities that filled dad’s life. I became an on-call consultant for my siblings while they sorted out how to make sure he was safe and living as good a life as he could. My sister did an amazing job, and, did it while she lived out of town. Even though she had a full-time job she was on the phone day and night, she became an expert at texting when it was still a somewhat new form of communication and we spent many hours on the phone, trouble-shooting problems as they erupted. And that’s just what it was like – we were trying to control an active volcano.

One day it did become clear. Finally. Dad had just turned 94 and was on one of his daily walks. He never allowed any of us to walk with him: not the caregivers, not his kids. He’d bark at us, curse at us to GET THE HELL AWAY. At this point in his life, the only time he was by himself, the only time he retained any sense of his independence was when he went for a walk, and the walks were even more important to him now that the caregivers were there day and night. I completely understood – he wanted some privacy…some alone time. But he wasn’t safe by himself – so the caregivers followed him. Because his hearing was pretty bad and his eyesight was worse, they just followed right behind him. There was enough traffic noise added in, and it took so much of his concentration to focus on where he was going, he never did catch them at it.

He was crossing a busy street, caught his toe on the curb as he was stepping back up onto the sidewalk, and fell. And oh he was lucky, we were lucky: no broken bones, fairly minimal bruising and a scrape to his forehead which bled profusely as head wounds are known to do, but no concussion. His caregiver was at her wit’s end. She knew how close they’d come to a tragedy, and she said she just couldn’t do it any longer. It was too much of a risk: for dad, for her…for everyone.

This was the turning point for me: the place that finally enabled me to see that even though I knew it would absolutely crush dad to move him out of his home, the possibility that catering to his needs…desires…dreams, might cause injury or even death to someone else, be it his caregiver, or a pedestrian or driver trying to avoid hitting him…I couldn’t reconcile that possibility. We knew it was time and it was a sickening feeling for us, his three children. Any of the choices left to us were at best, heart wrenching. All the solutions were going to have bad outcomes. I knew this. It’s the first time in my life that I could not see any light…

This was it. We had to move him. He wasn’t safe there. He was dangerous to himself and to others. And we knew we’d been lucky…we had a good run. And we knew our luck could run out at any minute.

Years before, as it came to me that I had to move to Los Angeles to help my parents out…I had grand and noble intentions. I’d been assisting elders in many different ways for years up north where I lived. During a serious illness, probably in somewhat of a state of delirium, I just knew it was time for me to be with my parents. Intellectually this was a completely insane idea: I had a semi-estranged relationship with my father and a somewhat distant one with my mother. It was not my intellect that was standing in front of me pointing a long and firm finger to the south: it was my heart. What a mess. My intellect had plenty to say about this; “are you OUT OF YOUR MIND?????” “Los Angeles?” “Your father?”

I wanted to believe that our culture would/could somehow come together to make soft, safe landing places for our elders. That somehow I could be their village. If I had been able to think clearly about it I would have known that wasn’t possible, but a grand debate was raging at full volume in my head which took up so much space in my consciousness; I didn’t have room for clear thinking. I just went. It’s a good thing I did. It remains the hardest thing I’ve ever done in my life and being my father’s daughter, I’ve done a lot of hard things. It was also a miraculous time in my life; my mother and I bonded in a most beautiful and tender way and – my father and I came to a state of grace that I absolutely could never have imagined possible, while he was still alive. A miracle.

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french fries

I got a call from my sister. She was worried, frustrated, crying. Dad wouldn’t let her in the house; she was locked out. Dusk was rapidly falling, she was in Los Angeles with nowhere to go, nowhere to spend the night.

For the last few years when I’ve told this story, I blamed dad’s behavior on something called “Sundowner’s”…common to people with certain forms of dementia. As daylight decreases, but well before darkness falls, every cell in their body shouts, “Darkness is coming, and with darkness comes danger! Lock the doors, turn off the lights, go to bed.” Dad definitely demonstrated “Sundowners” by this time. Recently I spent some time in Los Angeles with my sister, and in the midst of our sisterly storytelling, which often includes stories about all the shenanigans we went through with dad, I brought up this story, linking his behavior to Sundowner’s.

My sister said, “NO…that’s not why he locked me out. Don’t you remember?” Immediately, she began to laugh – a particular kind of laugh I recognized as precursor to a doozy of a “dad story”. Well, I didn’t remember, and it turns out this is one of those instances where the truth is much stranger than fiction.

At the time this happened, I was back up north living in my own home and my sister was down visiting dad in LA. We had come to a crossroads with his in-home care. We’d been able to gradually increase the number of hours that caregivers were there, even though he continued to resist having caregivers at all. Somehow between the three of us kids with all our different ways of communicating with him, we’d been able to expand the daytime contact hours.

Now it was clear to all of us, with increasing pressure from his caregivers; it was time to have someone stay with him during the night. We all agreed…all, save dad. One of his reasons for refusal was that it would be improper for a woman to stay in his home overnight. Ellen got the inspiration to see if we could find a male caregiver for the night shift. I thought this was a great idea, and also had one serious hesitation; dad was still, at age 93, dead set on being the “head of the house” in any situation. With dementia, that meant that he might very possibly challenge any man, known or unknown, found in his home in the middle of the night, with physical aggression. After all, he grew up in an era, and in a neighborhood where fistfights settled most disagreements, or, he might grab one of his hidden weapons – a golf iron or a baseball bat.

We decided to begin interviewing some male caregivers and see if we could find the right person. That’s why Ellen was in L.A…to find our man. An applicant came over one afternoon and Ellen was able to interview him out on the front porch first, while dad was finishing up his lunch – there they sat in a couple of scruffy, white plastic, outdoor chairs. The timing of these sorts of things was tricky; dad’s schedule had its own brand of randomness, so it seemed like the gods were with us. After their brief introduction Ellen came inside to ask dad if he’d like to meet this person who “might be doing some work for you”. And here’s where the story turned classically dad-crazy.

First, dad went out on the porch and without any conversation waved the guy off, as in “get the hell off my property”. Next, dad turned to Ellen and said in a genuinely apologetic tone with a completely straight face, “I’m really sorry, but I just can’t let you stay here.” As my sister re-told this story to me, she said it was like he so wished he could let her stay, but because of whatever she’d done, “Lord knows what that was”, he absolutely could not let her back inside his house. Ellen, at first just mildly baffled, said, “What?” At that point dad had lost his patience; before dementia he had very little patience, and after dementia, pretty much none. “You heard me, leave. You can’t come in. Go on,” and waved her off the same way he’d waved off the guy. With that, dad walked through the open front door, shut it and locked it. He not only locked the doorknob, but also locked it with the chain lock…a security feature on all the homes in this 60-year-old neighborhood. Instead of a deadbolt or a little peephole, there was a shiny brass chain that enabled you to open the door maybe an inch, so you could safely see who was at the door without exposing yourself to potential danger. Well, that’s what dad used on my sister, his youngest daughter, on this sunny afternoon. He usually didn’t do the chain lockup until he went to bed…but this was a dangerous situation and required serious action.

She could not comprehend AT ALL what had just happened. She tried the door and yes it definitely was double-locked. “Go on now!” was all dad said, in a much darker tone. At this point he was beginning to feel under siege by whoever Ellen had now become in his hard-to-make-sense-of-things mind. Somehow, amazingly, she was able to figure out what misinterpretation dad had just made. In that moment, he knew she was somehow a relative…and maybe he still knew she was his daughter, but most importantly what he “knew” was that Ellen had just had a very improper interaction with a strange man on his front porch. The interaction was, in his mind, so grievous that he could not allow such a “shamed woman” to enter his home. So he locked her out. This all occurred in the middle of a bright, sunny afternoon…there was no “Sundowner’s Syndrome” going on, like I’d remembered it. This had become “The Case of the Improper Woman” and Ellen was stranded in the midst of her childhood neighborhood.

Accepting defeat, she walked off dad’s porch and as the reality of her situation began to weigh on her…the tears began to flow. Her father had just banished her and, she was stranded in North Hollywood…a moderately safe place by day…but anywhere in Los Angeles could become a little sketchy at night. She was low on cash, so staying at a motel was not possible, and besides, any motel that she could afford in that area would be really sketchy…not just a little.

Finally she decided to seek temporary shelter with a dear elderly neighbor across the street. She knew my parents and since dad had become widowed, she kind of kept an eye on dad. We always visited with her when we came to visit him and she would give us updates on what she witnessed from her vantage point across the street. His daily walks were pretty much like clockwork, so she could tell if something was out of order, if she didn’t see him in the morning.

When Bea opened her door and saw Ellen’s distraught look, she reached out to her with a precious motherly hug and Ellen really began to cry. She just didn’t know what to do and her heart was broken. That’s when she called me. I was no help. Knowing dad I knew he wasn’t going to let her in. In other circumstances I would have said that he’d forget about it in a while and then she could just start over, but he was feeling attacked and most likely was pretty agitated. I knew from experience with him in that state, that it took more than a little while for him to get over it. If she knocked on his door again, who knows what he’d do and besides, now it was getting dark so “Sundowner’s” would be part of the problem.

I agreed that sadly, her best option was to spend the night with Bea. I was sure glad it wasn’t me down there, locked out. Before Ellen packed it in at Bea’s, she decided to go out to get something she’d forgotten to bring with her. She was driving along Ventura Blvd, a long and meandering street on the south side of the San Fernando Valley, past a myriad of shops. Every kind of retail store and food establishment offering items you know about, plenty that you’ve never heard of, and many that you don’t want to know exist – it’s all there. She was driving along not thinking about anything in particular when she saw a fast-food place.

“FRENCH FRIES!” This thought screamed out to her. “GET DAD SOME FRENCH FRIES. You can BRIBE him with FRENCH FRIES!”

In this moment, she remembered his caregivers telling her that sometimes when dad would fire them, and tell them to GO HOME, when he wouldn’t forget about the whole interaction after a few minutes so they could just carry on with looking after him, they’d leave and go get him some fresh, hot French Fries. They told Ellen that it worked every time. She pulled into the next fast-food place she passed and ordered some piping hot French Fries.

Back at dad’s house she gingerly knocked on his door again. By now it was dark and dad was quite agitated. “WHO IS IT?” he yelled with bravado and fear in his voice.

“Dad, it’s me. I brought you FRENCH FRIES!”

There was silence. Then she heard his hand on the chain lock, and the door swung open. She almost handed them over to him, but at the last minute she saw a very real possibility that he would simply grab the fries and slam the door. Ellen was thinking on her feet.

“Hi dad, I brought you some French fries! Let’s go sit at the table and eat them together,” all the while holding them just beyond his grasp. They sat down at the dining room table and ate the deliciously hot, fried, salty bits together in silence. As soon as they finished, she got up from the table and disappeared into her bedroom. She turned off her light and got into bed, being as “quiet as a mouse”. She didn’t want to risk any kind of disruption. Who knows what he would do.

French Fries are the best bribe in the world. Of course they are.

When Ellen was first locked out, she called me – and she also called our older brother. He wasn’t too sympathetic or understanding of the enormity of the situation. He lived back east so her call came in the midst of his own family heading off to bed. By this time he’d had plenty of his own frustrations with our father. All this to say – he wasn’t much help.

“Just tell him who you are and tell him to let you in.”

Dad was not someone that responded well to his children telling him what to do, way before dementia had ever raised its unpredictable head.

Some months later…IT HAPPENED TO PAUL! Dad locked him out. And because of dad’s issues with needing to be the alpha-male, he was even more aggressive sounding toward my brother, feeling extremely threatened by some big, male stranger trying to enter his home. Paul COULD NOT believe it. He was really ticked off. He called Ellen, and to her credit, instead of goading him…talking to him the way he’d talked to her, she simply said, “Paul, go get some FRENCH FRIES.”

He did. It worked. I’m telling you, “French Fries”: it works every time.