Tag Archives: Adult Children as Caregivers

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just one dance

One of the unexpected blessings that bubbled up to the surface during the last few years of my father’s life, as dementia began to move into our world, was his propensity for outbreaks of shear silliness and joy. The hard times between my father and I began when I was in early adolescence and those explosions and heartbreaks overshadowed and sometimes completely eclipsed many years of our relationship. I spent a lot of my adult life bracing for what might be the next confrontation with him – so this turn toward lightheartedness was an incredible relief.

On this particular evening, we’d taken him out to dinner and at this point in his life, it was common that he’d get wound up from the excitement of it all, in the same way that young children do. We always wanted to take him to some place new, but quickly learned that what he really wanted…what really pleased him was to just go to the same restaurant where he’d order the same thing. The whole excursion was incredibly surreal because it would go exactly the same way EVERY TIME.

As soon as we walked in, dad would say with great concern, “There’s no one here. That’s rough on business.” Often, the place would have plenty of customers, it’s just that dad couldn’t see them or hear them, and since he had owned a small business himself, he felt deep compassion for the owner. Sometimes my sister and I would offer to count the customers for him so he’d know that the guy was going to be alright, at least for one more night. We’d count out loud, stating where they were sitting, and how many people were at each table. He’d been there so many times; he could picture it in his mind from when he still was able to see the place. It would put him a little more at ease if we did this…so we did.

We always sat in the same spot; we had to sit at the table with the best lighting because dad’s eyesight was so bad, but not near a window because he’d get a chill from the draft. We’d go through the whole menu and he’d think about it for a time, and then say, “How ‘bout a turkey and cheese omelet,” like it was a grand, adventurous choice…which I guess it was, since he couldn’t remember ever having it before.

Every now and then we’d try to get him to agree to something else, partly just for us, just for the novelty of it. For some reason this one item was fixed in his mind – he just loved that omelet. It came with LOTS of melted cheese and this was the crux of the problem. Miraculously, somehow dad would get a bite of the omelet on his fork even though he couldn’t see what was on his plate, but then the melted cheese would string out in one continuous rubbery strand, from the omelet to the fork to his mouth and everywhere in between. It always happened, it was always a mess and Dad hated when we’d try and clean up after him while he was eating. The worst part was that my sister and I would have to avoid eye contact with each other because it was such a ridiculous scene and if we caught each other’s eye…we’d start laughing uncontrollably. And that REALLY annoyed dad.

We’d just arrived home from one of these outings. Dad was wound up from the excitement of it all, and also overly exhausted. He’d had a great excursion out with his two daughters, had an opportunity to talk a little about the plight of small business owners and now we were home. We knew the best thing would be to get him to go to bed. That’s what he needed to do. But. He wanted to hang out with us some more.

Dad was a tough nut to crack – he didn’t take well to offers of help or change, even positive change, especially from his children. My sister, who’s a musician, was great at finding some of dad’s favorite music and figuring out ways to incorporate it into his daily life. She was as stubborn as he was and wouldn’t give up. She’d found some radio stations that played music from the time when he was a young adult, which would have been during the ‘30’s. Even while resisting, if the music was right he couldn’t resist it for long – he loved it so.

We turned the radio on and a great old song poured out into the living room. I just happened to be standing right next to dad. He put out his arms as if to start dancing…and then as if a marionette artist had pulled on some strings lightly, I put out my arms, and in yet another miracle, dad and I were dancing… TOGETHER.

My teenage years were in the 1960’s, so I never learned to partner dance…the few times I’d tried it with people from my own age group, it was a frustrating and sometimes embarrassing experience – so I steered clear of it. The problem was that I didn’t know how to lead, or to follow. Well, all of sudden I found myself dancing with my father, who I’d heard was just as good a dancer as his younger brother who was a fabulous dancer, but I’d never seen my father dance.

And here’s the thing: my father knew how to lead – even me, his headstrong, chip-on-her-shoulder, eldest-daughter. I could feel, ever so subtly, which way we were going to move, just before we changed direction. It was an amazing feeling. I, who loved to dance, had never come across a partner who had enough grace or rhythm or confidence in their own dance skills that I would be willing to surrender to the experience of dancing with someone else. AND HERE I WAS DANCING WITH MY FATHER – MY ARCH ENEMY – MY NEMESIS. As we were dancing, as I was feeling this incredible amazement, I heard in some part of my consciousness, “Of course you and your father dance so well together…you’re so much alike.”

As quickly as this time-out-of-time moment had begun, it ended. The song was over and we looked at each other.

I looked my father square in the eye, saying, “Wow, dad, you’re a great dancer.”

He looked right back at me and said almost sternly and with a tad bit of surprise, “So are you.”

Then he smirked a little, let go of my hands, melted onto his dear old friend, the couch, and throwing his hands up into the air said, “Phew! I’m beat!”

The mystery blended back into our everyday world. My sister and I somehow got him to go to bed. But the magic of those few moments of dancing with instead of bracing against that amazing old man is something I will never forget.

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it’s too much

We sat on the couch next to each other, the couch that had been his home-base every evening when he came home from work, and now at age 94 and after sixty years, it was where my father spent most all of his waking hours. The couch had been his couch…mom and we three kids had to make due with the loveseat and whatever other seating was available, so it was with some sense of honor and a bit of trepidation that I found myself there with him.

The weather was uncharacteristically gentle; soft early-afternoon light came through the three windows just above my father’s small world, there on that sofa. It was warm enough that the front door was open and cool enough that there was no need for air conditioning. A quiet breeze inhaled and exhaled through the screen door. My brother and sister were off running errands, so we had this time to ourselves. We sat there and for some reason, we were silent.

I had arrived in Los Angeles the day before, joining my brother and sister at dad’s house. He was no fool – even if he did have dementia – he knew we were up to something. It was rare that the three of us showed up at the same time, and the truth is we just weren’t very good liars. Each of us in our own way was so heartbroken about the truth of why we were there; we probably didn’t do a very good job of hiding our grief.

What we were up to was that we had come to move dad out of his home and into assisted living, but not any assisted living. We had to move him into a place that was “secure”, meaning a place where basically, he’d be a prisoner. He was no longer able to make decisions that didn’t put him or others at risk. Many who’d walked this way before had told us that because of his dementia, it was a bad idea to tell him ahead of time. The time for that conversation was long past, and we had tried to have it with him. Whenever we brought it up, he’d slip out of the whole thing effortlessly, like an Aikido master getting out of a wrist-hold before anyone knew what had happened. He was adamant: he was going to stay in his house and he was going to be fine and he didn’t need any help, especially not from his children: end of conversation. Well, the time had arrived. It was time for him to move, he was not able to stay in his home and be safe and it wasn’t only his safety that we were talking about. He was a strong, healthy, stubborn and wily old man and his problem solving skills were getting more and more dangerous.

The week before I arrived in Los Angeles I was pacing back and forth, around and around in my mind – how could we NOT tell him? How could I not tell him? How could I show up at his house with this plan all ready to go, and not be honest with him? The thought of it made me sick to my stomach. I knew what that house meant to him, I knew what his independence meant to him, even though we’d already slowly but surely gotten him to allow caregivers first to visit every day and finally more recently actually stay with him around the clock. Between the incredible creativity of two dedicated young women, and with help from each of his kids, we’d been able to extend the time he was in his home – but that time was over. We all knew it.

As I prepared to make the heartbreaking journey I took to talking it all out with him, in my mind. It wasn’t even a conscious decision; it was just all I could do. I told him everything…why, where he would be living, what it was like, the good, the bad…everything. Over and over that week I begged anyone who was listening to somehow help this stubborn old man know that we were plain out of options.

Someone walked by the house talking, loudly of course, on their cell phone, and interrupted our reverie there on the couch. Out of that immense silence came this from my father,

“So how much are you getting for the house?”

He’d been a realtor thirty years before. “We’re not selling it dad. It’s your house.”

We sat for a few moments and then,

“How much do you think you could get for it?”

“Realtors do drop off their business cards all the time, but it’s your house. Do you want to sell it?”

“How much do you think we could get for it?”

“We haven’t talked to anyone, but I think the last assessment was about $600,000…isn’t that insane?”

He let out one of his long, slow whistles. He and mom bought it in 1947 for $14,000.

“That’s a lot of money. What are you going to do with it?”

“It’s your house, dad. If you sold it, what would you do with the money?”

“If we sold it, would I still live here?”

“No……if we sold it, you’d have to live somewhere else.”

“Where would I live?”

I could not believe we were having this conversation. I had to keep telling myself, “Just follow his lead.”

“Well…we’d find a good place for you to live.”

He shook his head slowly. His whole body shifted. It was a small, subtle movement, but he had just slumped.

Again he shook his head and said, “It’s too much.”

“The house?”

“It’s too much.”

In that moment I saw that my father, now almost blind from macular degeneration and with poor hearing although he thought it was just fine, surveyed his home, his kingdom, in the same way that bats see in the dark. Somehow he used a kind of echolocation to monitor the comings and goings and now, even though he didn’t have to actually get up and walk around to do it – it was still too much. As a young man he’d developed a whole routine that he went through every single night before he went to bed. He’d start with latching the chain on the front door, and then he’d turn off the front-porch light. Then came the swish of the curtains closing, next he’d pull the shades down. Moving into the kitchen he’d turn off the light, then head down two steps into the den that he’d had a hand in remodeling in the ‘60’s. He’d lock the back door, check that all the windows were closed and pull the curtains. Turning off the living room lights as he passed them, he made his way to his bedroom. Every night for most of his adult life he’d made sure we were all safe, and now, even thinking about it…it was “too much”.

“It’s a lot to take care of isn’t it?” He nodded slowly in agreement.

Somehow it had happened. I’d been able to tell him the truth. He knew it was time. I knew he did. And even though by the next day, well, honestly in 15 minutes, he would forget all of what we’d said, I knew that somewhere in his heart he’d heard that truth, and, he was ready. I also knew that he forgave me, forgave us, and still, I knew that next day was going to be the most excruciating day of my life, of all our lives. I was right. About everything.

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a giant in the bedroom

There’s no breeze to move the curtains, only a heat that sits heavy and still. The curtains were my first sewing project in junior high: highly polished white cotton with gold, ball-fringe along the bottom edge. Because I ignored my mother when she said I had to pre-shrink the fabric – after all, “What did she know?” – they hang about two inches short of the windowsill. At dawn, as the sun rises above the houses across the street, a blinding light comes blasting into the bedroom, squeezing between the curtains and the sill, and burns a blazing strip across the opposite wall.

I can’t believe I’m sleeping here again, in the “front bedroom”, with all the same furniture, even the bed. I don’t just mean the same bed frame; I mean the exact same mattress and box springs that I slept on throughout my entire childhood. The bed is draped with a bedspread originally from my parents’ bed; gold with large white flowers outlined in rough brush strokes of black. Now that dementia is beginning to creep slowly into my father’s life, and with my mother gone, he doesn’t have the patience or, at 116 pounds, the strength to fuss with a bedspread.

Awakening to the tender, hauntingly familiar song of the mourning doves, at age 50 I am overflowing out the windows; windows which I have to leave open at night even though it is Los Angeles – a place that does its best to instill fear in its residents. Most everyone shuts and locks their windows at night even when it’s still in the 90’s. I cannot. I can’t breathe because I’m a giant now; an adult who’s trying to cram herself back into a tiny little room that once contained her in childhood. I’m too big. It’s too hot.

I made the decision to move back home in the midst of an illness. Something a friend said sparked a heart-breaking-open kind of heartbreak. I heard more than thought that I must go home. A conflict raged, like the wildfires that marked every summer of my youth. My mind shouted at the top of its lungs, “Are you crazy? Move BACK to Los Angeles? You barely escaped the first time. NO! No way! You’ll be crushed.” No matter how loudly my mind raged, my heart simply stood by quietly, calmly, pointing the way: the way home.

Well, I did go. It was the hardest thing I’ve ever done. EVER. And I wouldn’t trade it for anything. I’d been helping out folks who were the age of my parents for years; maybe it was time to help out my own parents. It sounded like a great idea, except – I didn’t tell my parents. Oh I told them I was moving back down to L.A, and they were thrilled; I just didn’t say anything about helping them.

When I finally arrived, they made it clear with my first helping gesture that at 81 and 87 they were just fine; they didn’t need any help from me. Translation: “Butt out!” Some force, larger than all three of our stubborn, afraid-of-intimacy selves, quickly took over.

One month into our experiment of living close by to each other, my father had a minor stroke. When he had to have an MRI, it was decided between the three of us, in our unspoken way, that I, not mom, would take dad and stand by as he surrendered all his ferocious invincibility to a giant gleaming beast. I watched him slide slowly into the gaping maw of an enormous and deafening machine, only to emerge on the other side as a frightened old man. I was there to help him find his way…out of the office, into the elevator, through the dark parking garage, into the car that he no longer was able to drive, to the safety of his home. Inside the glare of that machine, somehow a part of him was defeated in a way that would never be reclaimed.

A few months later my mother fell, ending up with a large gash on her head. Miraculously she didn’t break any bones…but after a seven-hour marathon at an unbelievably overcrowded and understaffed local hospital, we three arrived at a profound and deeply vulnerable new dynamic, a place we could never have imagined, let alone approached, ever before: from time to time, it would be me, their middle child, and from my father’s perspective, not even a son, but a daughter…who would now make some of their most crucial decisions.

Who could have known what would become of my move back home? What did occur was grander than my wildest dreams. My mother and I tenderly broke through a barrier of intimacy that had been sterile for so long, it had almost dried up and completely blown away. While she lay on her side on a hospital bed, waiting for her head to be stitched up after she fell, I shyly slid my hand over to hers and she shyly took hold of it. We held each other’s hand – for a very long time. Whatever had caused us to be so afraid of reaching out for each other for what seemed like forever, was dissolving.

On the evening before I drove away from Los Angeles, away from my father who by now had been widowed for a year and a half, he and I shared one last dinner at his favorite restaurant. A rare autumn mist had moved in while we ate this last meal together. Afterwards, we sat in the car, staring straight ahead through the windshield, as droplets formed and rolled down the glass. We were both heartbroken – I was leaving. We knew it was time for me to go. My father took my hand. Tears rolled down my face. I can’t say for sure, but maybe even his old, nearly blind eyes filled to overflowing with some of the same salty water. Out of a dense silence, he said tenderly, “Thank you.”

If you appreciated this essay, you might also enjoy reading what more could I ask for a longer treatment.