Activities of Daily Loving

The second time we moved my parents the day was clear and cold, and the movers were happy about that. There wasn’t much furniture anymore and most of the keepsakes had been put into storage when we moved them the first time. Many things we sold or had simply given away, as fifty years of what I thought of as home was reduced to Craigslist, Goodwill and a five by five unit off I-35. As we prepared to move them again, I discovered an apartment as cluttered as their minds were becoming. Half-eaten baked potatoes littered the pantry, along with a melted carton of ice cream. My aging parents had spent the past six months in a place called the Forum, until one day my mother showed up for a doctor’s appointment missing her pants and my father had walked through traffic, looking for a cousin long deceased.

The Forum had been a distraction anyway. A tony retirement community in the Park Cities area of Dallas, the Forum was considered Independent Living and catered to a senior but self-reliant crowd, folks needing a little extra or looking to downsize. There was a doorman and valet, an elegant dining area and cocktail hour every afternoon at five. Classical music played tastefully in the well-appointed lobby. My parents had chosen it when Dad was newly diagnosed and it was a change we actually got excited about. Our heads were firmly in the sand in those early days. We were not thinking of how rapidly their needs could increase because The Forum seemed perfect for my parents, in fact, it had felt like an upgrade.

My parents were not wealthy by any stretch — they were music teachers and squarely middle class. But my father had planned and saved for their retirement for a very long time, and The Forum felt like the kind of place he was saving for. Plus, they were closer to their church and many amenities. They would not have to worry about meals (“More time to read and play piano” my mother commented). Mainly, they would not be as isolated as they had been in their suburban home and would have more support, as my sister and I no longer lived in Dallas. But this was dementia, not a vacation. They didn’t end up doing many of the activities they had so looked forward to, as the effort it took just to function day in and day out overtook them.

Thus we found ourselves at only six months in needing to move my parents again, this time into Assisted Living, for even more support. We’d chosen a place four hours away in Austin, to be close to my sister Emily and her family, although it meant moving my parents from Dallas, their home city of over 40 years. My sister and I had been taking turns going in to Dallas to help them and it was taking a toll on all of us. Moving in with either of us was not an option, although I suggested that, as my parents felt that they would be imposing. My father had taken out long term care insurance for this very reason, to make certain he’d never be a burden to us. Not that we would have felt that way but he had been adamant before his illness that his girls not be the ones “wipin’ his butt.”

My parents were on board with the decision to move, but decisions were slippery for them in those days. Their primary GP had just assessed my mother Rosemary with early stage dementia (my father, George, was diagnosed a year earlier with Alzheimer’s) and we’d not been given a very good roadmap for the disease. We were only warned that their living situation was no longer a fit, and that we needed to arrange for more care. Up to this point, my parents had covered for one another. My mother had been the caregiver for my father –the brains of the operation– even though she was disabled. But as dementia coupled with her significant physical issues, it was becoming evident that my mother needed care, too.

The biggest item to move was a 9-foot concert grand piano that my mother played and treasured. She had taught lessons on it for many years. It was sentimental, and it had certainly looked dramatic, if not a touch eccentric, in their lovely apartment at the Forum. Anyone who stopped by immediately dropped jaw. “My word. Who plays?”

My mother relished these moments. She rarely played for anyone, however, she was too nervous, and she practiced only when she was alone. But she loved that piano, perhaps irrationally so, and it had become the albatross of our situation. That and Dolly, their small white dog, to whom my father was extremely attached. My parents were still functioning well enough then that we felt we had to consider both when searching for a new address for them, and as one moves into higher levels of care, finding a place that will allow a dog and an enormous piano is daunting. “Why didn’t you play the flute?” I asked my mom during this process and was met with a stony look.

We focused on these things — the piano and the dog — because they were the things we could control in a world that was suddenly losing its center. My sister found a corner unit in a place called Brookline in Austin that was large enough and would also accommodate Dolly. Brookline was recommended because it also had a memory care unit which my parents could transition into “when the time came.” We thought then that we were years away from that time coming.

I dug out sweaters and we got to work. Every time the movers had to prop the main entrance door open to take a load out, one of the Forum residents walking by with a little dog would call out, “Shut that door! It’s freezing in here!” and I’d see the men take deep, measured breaths.

We stationed my parents in the lobby so they could watch the comings and goings and not be in the way of the movers. Being in the apartment amid such chaos was causing agitation and my sister and I, trying not to buckle under the strain of yet another move, weren’t much help. In the lobby things improved. My good-natured father joked with the staff and held Dolly, while my mother, on her walker, approached the action like a Royal in a receiving line. She graciously greeted the other residents and said farewell, telling everyone they were moving to Austin to be near family. And we’d sold her hard on being close to my niece, Emily’s daughter. “You must be so excited to be closer to the grandchildren” everyone said. Of course, this was true. But another, unspoken truth hung over us too: my charming parents had been asked to leave.

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The first thing I noticed upon entering Brookline was a more hospital feel, with circulating staff in institutional blue uniforms, pushing medical carts down wide hallways. Gone were the Forum’s valet and the doorman, the management ladies in their smart suits. The new place greeted me with a small lobby, a nurses’ station, and a dining area that looked like a Luby’s.

Differences between The Forum and the new community (I learned to carefully side-step the term “facility”) were considerable. It was not a nursing home, it was assisted living, and thought to be one of the nicer places, but it was on the same continent as the former. The Forum, with its sophistication, had still contained hope. Out here, off the freeway in South Austin, the new place seemed to indicate defeat. There were even more walkers at Brookline, and a number of wheelchairs were now in the mix.

I had driven down with Dolly; Emily, with my parents. Our caravan had not arrived at exactly the same time since I had stopped a couple of times to let Dolly pee and Emily was already there when I arrived. I found both parents seated in two of the lobby chairs looking overwhelmed, while the blue uniformed attendants were taking their blood pressure.

“Oh good you made it” my sister said, looking up from some paperwork. I could tell from the slight edge to her voice that it had been a difficult car ride.

“What’s going on?”

“He wanted to know where his wife was,” Emily said. “I think he means you.”

“Oh.” I looked over at Dad, who lit up when he saw me walk in with Dolly.

“He seemed to think we were going on a band trip. He kept asking if the other players were going to meet us there.”

My heart sank. We were told there would be an adjustment period when moving someone with Alzheiemer’s. I hoped this wouldn’t last long.

A couple of aides petted Dolly, who jumped all over them.

“One of our residents has a dog. Mr. Mike has Gus.” said one of them.

Yes, residents. I reminded myself. Not patients.

“Oh great!” I said enthusiastically, searching for her nametag. “Belinda?”

Get to know their names. I thought. We will need people on the inside.

I glanced over at mom and dad with the same forced enthusiasm. “Did you hear that? Dolly might make some new friends.”

They looked back at me bleakly. I think they were thinking about their own friends.

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Their apartment seemed the best of the bunch. I could tell that was probably true from the ones I’d stolen glances into from the hallway. One noticeable difference between this place and the Forum was that some of the residents left their apartment doors wide open and passerby could see directly into their apartments. The TVs were on in all of them; otherwise, they seemed lifeless. My parents’ living room was fairly large, and the master bedroom was also large. There was a wide bathroom with rails around the toilet, and a kitchen with a microwave and a refrigerator, but no stove. It occurred to me that my parents were now considered a danger to themselves.

We stacked boxes in corners, hung the clothes in the master bedroom closet. One of the movers commented to another as we worked, “I’ve never seen old people with so many clothes. What are they planning? Nights at the opera?’” They snickered.

It was true, my parents wouldn’t be going out much anymore, but I bristled.

“Actually, it’s the symphony.” I said.

Later my brother-in-law commented to me, “Did you tell them that there’s a piano coming too? And that it’s big as fuck?”

As instructed by the Alzheimer’s book I’d been reading, we arranged mom and dad’s armchairs in the familiar configuration they liked: Dad on the left, mother on the right, and their coffee table exactly as they’d had it at the Forum. Moving someone with dementia is difficult and not recommended — they need structure and routine for security. But if you have no other choice, try to recreate the old environment in the new place. Then we went to get tacos and beer for dinner. At that stage we were always looking for opportunities to give Dad a little outside stimulation, as he was getting depressed in the afternoons and my mother valued her alone time. But he could no longer do things unaccompanied so we went with him into the grocery store, a cavernous, blindingly lit space where everyone appeared to be in their early twenties and moved too fast, a sudden reminder that Austin is a college town. Dad stood blinking under the bright lights, and I guided him around the store, coaching him through the checkout line as he insisted on buying the beer as a thank you to us. The clerk exchanged glances with me when my father got confused by the payment system and I held his eyes for a long moment. He softened. “Hey no worries” he said to my dad, “Take your time.” I wondered if Dad knew where he was, or that we’d even left Dallas. He seemed completely unmoored.

The plan was for me to stay with my parents for a few days, to help them get acclimated to their new surroundings. We placed an air mattress on the floor of the living room and I settled in. I had taken off work the day before we moved, and planned to take Monday as well.

I wonder how many other families stay with their loved ones when they first move them into assisted living or a nursing home, if any do. I’m sure the staff thought I was nuts, but really, every family should do this. They should stay several days like I did, eating the food, sleeping in the room, soaking up the full experience. It is an eye-opener. In every moment and with every activity, I asked myself if I could live like this. I couldn’t subject them unless I felt like I could live there.

That first night, we were interrupted several times as the aides came in on rounds and were surprised to see me sleeping on the floor. I was grateful, of course, that my parents were being checked on. Mom had not been sleeping well and needed help transferring to the restroom. I got up with her and assisted the aides, explaining her condition and what worked and didn’t work. While it was a relief to know that they would be attended to throughout the night, the tone and the bedside manner of the aides were not what I expected. The first aide must have turned on every overhead light in the place, entering without knocking. I tried, in my half-sleep state, to introduce myself and mom and dad. The aide seemed uninterested, speaking loudly to my mother as if she were both hard of hearing and a small child. “Rosemary, do we need to use the potty?” Then Dolly, who slept with my parents, tried to bite her face.

The second one, Karen, was better. Dimming the lights and with her voice more subdued, Dad was able to stay asleep. I gave a half-hearted repeat of the explanation I’d given before, and showed her where the toiletries were. It was the NOC, or overnight, staff, so we hadn’t even met them yet. That one should be woken up from sleep by a stranger who is there to help you with the most intimate of activities seemed unnatural to me. Karen left the door to the apartment open when she left, and the hallway outside was surprisingly noisy at that hour with the sounds of carts and trash bins wheeling by and the aides talking loudly amongst themselves. My parents are modest, private people; it took them awhile to even allow me into the bathroom to help. I got up and shut the door.

When it was morning, I unpacked the coffee maker. My parents were creatures of habit and loved their morning coffee. It was clear that they would be on their own to either fetch it from the dining room downstairs, or make it themselves, and I worried about their ability to do so. They looked at the coffee maker like they’d never seen it before in their lives and so I demonstrated it for them. My dad had made coffee nearly every morning that he’d been married to my mother and probably every morning of my natural born life. It was one of the biggest rituals our family had and one of my earliest memories, the smell of coffee brewing in the morning and the snug, warm feeling that vigilant adults are nearby. He looked at me now like I was speaking Swahili. I felt the sinking feeling again, the pieces of ground crumbling beneath me. Once I poured him a cup, however, he accepted it with a hearty “Hey Hey” and was back to being his old jovial self. I numbered the parts of the coffee maker and hung corresponding instructions on the wall and hoped for the best. The next concern was Dolly. We needed to write into my parents’ care plan how many times the dog was to be walked and fed. My dad was able to be a companion on these walks but would no longer be taking Dolly out on his own, something he had loved to do for years. Poor Dolly was itching ferociously from the stress, and I was eager for things to settle. The upheaval was not good for anyone.

My parents both wore pendants around their necks at Brookline. This was a button that they were to push when they needed help with any of their ADL’s — Activities of Daily Living — like dressing and grooming and toileting. The aides on duty were then supposed to respond and assist, and their assurance at Brookline was that the page would be answered in 10–15 minutes. Problems with this started day one. My mother was put off by the concept of calling a stranger to help her go to the restroom, especially while I was there and willing to help, and Dad had to be constantly reminded to use his button (“I have a button?”).

The first time we pushed the button, instead of seeing one of the middle-aged women from the night before, we were greeted with a very nice young man, Jim, who looked like a college student. My mom took one look at him and then gave me one that was basically, a hard no. I tried to explain to her that he was a male nurse, medical personnel, with no interest in anything but helping her. She didn’t budge. I apologized and asked Jim if there were any female aides available. I explained that my mother had never had male care staff assist her. Jim didn’t seem thrilled and we waited for a female aide about another twenty minutes. I thought this was going to be, quite simply, a horrible way to live.

I pressed ahead, joining my parents for lunch in the dining room. The food was decent enough, and the room opened onto a pretty courtyard. I saw several women gardening and pointed out these features out to my mother, who has never gardened in her life, and who seemed remote and barely spoke. My father ate his soup in silence. Upon returning to the apartment, however, I suddenly faced his fury.

“We were tricked,” he said, so mad he was shaking. “We are…we are” (he fumbled to find the right words) “we are not those people!” He pointed to the door. Lunch had indeed been sobering. The place was not as high end as the Forum, but what my father was reacting to was the more acute condition of the other residents. They moved slowly, they were more hunched over; one woman was being helped to eat. In this unfamiliar place TVs blared from darkened rooms, ancient looking figures crept down hallways, clutching at the handrails; and the absolute topper was a faint but pervasive smell of urine. At the Forum there had at least been a cloying artificial fragrance and some semblance of privacy. There had at least been music. No, it was obvious that something was different here, that something was afoot.

His anger engulfed me. I remember stepping outside their apartment into the hallway a number of times to call Emily, who had taken my niece to a tournament in a nearby town.

“Get back here if you can” I hissed. “We are having THE conversation and it’s going down right now.”

“Some of that is just going to be the difference between independent and assisted,” my sister said, after I unloaded on her. “It’s a higher level of care. It’s going to look like it.”

My sister is my equilibrium. She is objective, rational and calm; and I struggled to compose myself and adopt the same tone. It was what my parents needed.

“Amy at some point we’re going to have to let them make their way in there. They need to establish a routine and bond with the caregivers and they won’t if you are there doing everything for them.”

She was right, of course, and although she hurried, she didn’t make to us in time. I faced one of the hardest days of my adult life, and I faced it alone, but I was strengthened by her words.

My parents sat in the sparsely furnished living room, boxes all around us. My mother looked pale and frightened; my dad, red-faced and livid. “You tricked us!” he said again, angrily at first, and then as time went by, tearfully, a wounded and pleading expression on his face. My mother looked from me to my dad and back again as if I were suddenly a stranger, someone not to be trusted. The room was thick with a desperate energy and I longed to leave it. I felt like throwing up. But I had no choice. We were in this together.

I told them we had not tricked them, that they had seen pictures of the place online and thought it looked nice. They had agreed to this move, I reminded them. Then they said they wanted to go back to the Forum, back to Dallas.

“Unfortunately, the Forum is not right for you now,” I said and started to launch into why, but reasoning is one of the first things to go with dementia. I had lost them with my complicated explanations.

I offered that they could live with me if they disliked being part of a “retirement” community, if they wanted more of a familiar home environment. I said I could find a bigger house. But they didn’t want that either and they stared at me in prickly silence. I lived too far away in Oregon, and it would be such a different world for them. No, what they wanted was their old life back, their youth and health, mobility and independence. I could give them a lot, but I could not give them that. And I felt like I was failing them because of it.

Maybe Brookline would turn out to be nice, I said, if we gave it a chance. And they would be near Emily’s family, who they’d see frequently. “The reality is you need more support now.” Shaking his head, Dad looked disgusted. My mother was mostly quiet, which was worse. She was slow to anger and never stonewalled me — my mother was my greatest supporter and in my corner with most everything. We talked until late afternoon, or I talked, and they listened. As the day started to cast shadows across the wall I told them over and over again, “Look if it’s not a fit, we won’t stay. Let’s just give it a few months.”

An aide came to check in, and she was gentle and kind. She asked if my parents would like an escort for dinner. From the way they looked at me, I could tell they’d had enough for one day. They looked tired; my dad seemed hollow. We begged off, saying I’d pick us up dinner somewhere.

My parents were ready for a nap, so I helped them into bed and then took Dolly with me in the car. I needed a break, needed to decompress and smoke a cigarette I planned on devouring. I looked back at their window as I was driving away and had the same unsettled feeling I’d had when my children were babies and I’d leave them in an unfamiliar daycare. Like I was leaving behind a piece of myself. Not knowing where to go, I lurched into the parking lot of a TJMaxx and had barely pulled the car into a space before the sobs started. I wanted better than this for them, they deserved better. These were supposed to be their golden years, traveling and dining with their friends. My devoted, hard-working father had scrimped and saved for retirement, worrying and fretting and being so frugal, only to be handed this blow, this diagnosis, this….curse. They were wonderful parents, and more than that, they were my best friends. I was not an easy kid to raise but they never gave up on me, even in my darkest hour, even when I’d given up on myself.

It was my turn to support them now, to be strong. It was time for me to parent them. As this biological table turned, I felt the full weight of something they would often say to me when I was sick or hurting, a cool hand on my forehead, “I’d take it from you if I could.” I wanted to take it from them. If they have dementia, we have dementia, simple as that. This wrecking ball of a disease with its foggy confusion and crippling fear. There’s no way I could make them sit in it alone. I’d fly in every month. No matter where this journey would take us, I resolved to still find moments of joy.

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That second morning I was up while it was still dark. My mom had had a fitful night, calling out in her sleep and waking every few hours, disoriented. I took Dolly out, then got the coffee started as I heard mom call out to me from the bedroom. Dad was still sleeping so I helped her out of bed and to the restroom. I reminded her again of her button, and told her when I was not there she would need to use it to get assistance from the aides. I poured our coffee, making sure hers had two sugars, just the way she liked it. I’d run out earlier, while they were still sleeping, to pick up some muffins that were her favorite. We took our breakfast over to the armchairs — I helped my mom into hers — and then sat back expectantly to watch the show. The sun was just starting to rise in the sky of the Texas Hill Country, that big beauty. If you don’t think Texas has any national treasures, just look up.

After a moment that felt like peace, my mother spoke.

“Amy” she said shyly, as the sun grew stronger and warmer, “I’m really going to try here.”

She looked like a little girl then, and I could see so clearly the Preacher’s Kid she had once been…innocent, timid, wanting to please. It was the side of her that made me most protective. She was going to try harder, as if there were something she had been doing wrong just by aging and being ill.

Watching the light streak across the clouds, I felt the tender stirring of hope. She’d be close to her daughter, to her granddaughter, she’d finally be living in the same city with family after so long apart. Perhaps they’d make new friends at Brookline, and maybe she’d even play the piano for them.

We took sips of our coffee.

She was choosing hope, I realized, for me. She didn’t want me to worry and she didn’t want to be a burden. Quiet and kind, my mother had made countless sacrifices for me over the years, as good mothers do. This one would be the hardest on her, though. That much I knew.

It took me a moment before I could speak.

“I know you will mom” I said softly. “I know you will.”

The clouds shifted then, and silence was all that remained.