“I never knew [dying] would take so long.”
It was time. My mother was in her early 80’s. She had begun to fall down with alarming frequency. Indeed, she was capable of falling down just standing and shifting slightly on a piece of carpet. Her memory, never her strong suit, was getting steadily worse. On one occasion, in the dead of winter, dressed only in a nightgown and sweater, she locked herself out of her apartment with her keys still in the apartment and nearly froze to death. Add to that the fact that she lived in an apartment built over a garage only to be reached by two steep flights of stairs, and you had a recipe for disaster, especially in the icy winters of Cape Cod. One slip and she could have been a goner.
So my brother and I decided we had better investigate what used to be called nursing homes, homes for the elderly, and are now called “assisted living facilities.” Lush surroundings, with three tiers of nursing services, including intensive “skilled nursing,” offered as the guest slowly approached the final exit. Visiting these places was enlightening. Take a guess. How might you decorate an assisted living facility in the wilds of northeast USA? Well I was wrong too. The place was huge, with many bright white buildings surrounding the central administration, adorned by miles of grass and shaggy fields. It was like a cross between a Southern plantation and a New England college campus. A humbler or tackier example: it was not unlike an extended toyshop in a giant mall
The interior featured images – friezes, framed pictures, or actual dolls- either of little children or ladies of the last century…or a cross breed, the American Girl doll, blonde Farrah Fawcett shaggy hair, blue eyed, fetchingly attired in outfits from the 1960’s onwards. Doggies and kitties and little girls (for some reason little boys were not as popular). The color scheme was of powder blue and turquoise and pink and rusty green. Flowers—dried, wooden, real-were all over the place. in short, it was like having fallen into a Hallmark card or a Holly Hobby or Hello Kitty manga and being unable to get out.
Since the facility’s population is heavily weighted towards women, I suppose it makes sense. As more than one inhabitant observed “the women here last longer.” This was not what I had envisioned for a place where people go at the end of life. But the location, budget, and all around ambience decided my brother and he announced that he would be loading Mom’s goods up and taking her to southern Philadelphia. She didn’t want to go - oh, she struggled mightily - but the multiple falls decided us. Yes, I was being judgmental. Just setting up the journey had been maddening. Forgetting that Mom’s memory was nonexistent, I couldn’t get her to give me her phone number. She repeatedly gave me a number that was out of service. Why was this disturbing? It was about equally possible that Mom had decided she would withhold the number, as it was that she genuinely could not remember it. Always a 50-50% chance.
When I next called the front desk in an attempt to reach her, they insisted three times there was no such person in the facility. On the fourth try I finally had the sense to ask for the supervising nurse, a poised, reasonable woman, who in turn passed me through to Mom’s room. Mom was all apparent charm and delighted to get my call, which strengthened my conviction that she might have been playing phone tag before. It always invigorated her when she was able to – say – empty all the meds out of their bottles and sweep them to the ground so that we had to get down, pick them up and sort them, and replace them in the pill container. One could argue that this was dementia - but it struck me that she was enjoying the outcome a bit too much for dementia. If she was being wicked, then she was in pretty good shape. Her old, true self, in fact.
But this visit was different. I knew she was failing and time was short. Otherwise nothing would have gotten me through this mêlée. I’d obtained her phone number, set up a one night stay, in their guest room, and it was time to tackle the airport. I was resigned to chaos – I was sure nothing was going to go as planned. And the airport did not disappoint. LaGuardia was accommodating army furloughs, so the airport was congested with military men and women who naturally took first place for seats. They pre-empted civilians, plane after plane for 8 hours before we finally managed to get on board.
So here I was, simmering. Not an auspicious way to start out. But Mom and I had been on a collision course much of our lives, why should this be any different? The chaos continued steadily at the Philadelphia Airport as I struggled to find a cab which could take me to the assisted living facility. The cabdriver assigned was in his way as off kilter as the flight plans. And totally unfamiliar with the terrain. He was a young, innocent, naïve, recently arrived Indian guy, exceedingly chatty and full of questions about life in this country. He seemed incapable of following either verbal directions or the sweet Hispanic voice of his GPS, so that we saw far more of Pennsylvania over an extended period of time, than I wanted to.
The driver was actually very charming. Once he saw the broad spreading wooded grounds of the facility (next door to a large cemetery) he was absolutely overawed. “Is this your house?” he asked, stunned. “Is this your father’s place?” “Is this your family’s place?” I replied no each time with increasing ill temper; he was oblivious to my pique. Once he had grasped that we were headed for a place where comparatively rich Americans went to die he was thrilled. He was clearly seeing the place as Home to the (Elderly) Stars, and himself as prospective Chauffeur to the Stars. He pressed several cards on me, each for a different kind of job, but insisted that I notice that he was a Private Chauffeur (caps audible). We arrived, the chauffeur wistfully waving bye bye.
I had forgotten – but the staff had not – that I had a past with the facility. On a previous visit I had requested the services of the buildings and grounds guys. They had carts with which they transported the residents on request. Many residents were partially or thoroughly immobile and the place was huge, the size of several football fields. If you had no car – as virtually everybody mobile did – getting from one building to another was strenuous. Hence, the carts. I had no car, Mom had no car. So on the first visit after we had had dinner in a remote part of the complex, I helped my mother into one of the carts. The driver was obsequious to her and rude to me (which suited my mother just fine. It was exactly the way she would always have had it – in her world she would be the queen).
Because she was happy with the service, I was slow to detect the obvious. I saw no reason why I couldn’t do the same as Mom – request the carts when I wanted to travel at night. The nights were very very dark, there was no lighting and the signage couldn’t be seen. If you walked on the grassy areas, or the concrete walkways, you discovered that they were very bumpy and irregular. It would have been very easy to get disoriented and lost, or break an ankle. Clearly the inhabitants generally stayed inside. But after two or three rides the drivers made it plain that the carts were for residents, not for visitors. One burly grizzled guy actually growled at me. I would have to shift for myself. My first trip was clearly remembered, not fondly. On my second visit I was welcomed by a nurse administrator (poised, charming) and by a nurse (frantic, naïve but bullheaded), who stared into my face, identified me, “You’re Miss McCurdy!” the carts are not available! Not “hello!,” not “how are you? nice to see you again.”- “No carts!” she cried. “No carts!”
Since I had not yet requested one this struck me as both rude and comical. It established the local ethos – relentlessly quick to establish rank or status for the visitors. And to let them know in no uncertain terms what they could and could not expect. We don’t have a concierge facility they told me, meaningfully. We are here for our residents, and nobody else. Later that same day I did see their point. Understaffed, overstressed, really nobody extra to accommodate me. But at the time it seemed gratuitously rude. To be fair, this same nurse later changed her attitude. She told me that if I liked – (understood, as a concession) – I could have breakfast the following day with the residents. This same nurse cross questioned me closely about who I was and what I did, leaning heavily on the brighter side, so that she could explain to the cook and the surly residents eating breakfast why it was okay for me to be there. And why I liked oatmeal and bananas and that I might be allowed to have them. I asked for milk.
“MILK!” a bark from one of the residents. [Understood- “she’s got a nerve!”] Dead silence. I did get the milk and the bananas. My fellow breakfast eating residents, their numbers unusually dominated by men, had faces like stone and voices that bellowed strangely in that otherwise deadly silent spot. One of the men shouted “She’s here to be with somebody’s Mom? Whose Mom!?” Whose Mom!?” I shouted back my mother’s name, not knowing whether they knew each other or not.
No comment. There was a dour silence but nobody actually attempted either to comment on Mom or mess with my oatmeal or to take the spoon right out of my hand. At that, they’d have had a job. I was seated carefully many feet away from this fun group. No unsupervised interaction was going to take place on this nurse’s watch. They were old, they were ill, they were never going to leave this place, they were dying, this was the last place where they could exercise some control in their lives. But I still didn’t see why they had to be so angry about it to a perfect stranger. Well, maybe I do. If I were there, I’d be angry too.
Mom had been there for about five years. And if one believed her, had hated it the whole time. Her summary: “Hate the guests. Hate the administration. Hate everything but the food.” (She trundled off to the dining room with rigid regularity three times a day.) Again, this could have been dementia. Sadly, this outburst happened when her granddaughters were there visiting. Lovely kids, genuinely shocked at her behavior. Distressed, they asked their father: did they have to go visit Grandma again? He soothed them – no they didn’t. And I don’t doubt she inspired similar feelings in the nurses, administrators, orderlies, who were there to take care of her. One would have to be saintly to put up with her.
We all felt that Mom was being rather worse than her former self. One usually pleasant and tactful brother commented “Mean as a rattlesnake.” It was hard to remember that her dementia could mean that she really had no control over her tongue, especially when we met other demented patients who still managed to be pleasant. One asked me loudly if I was a nurse, or a musician, or the GARDENER! Kind of charming. But then I arrived and spent two days with her and saw that Mom had some reason for anger and fear and sadness. Her fears were not fantasies.
On my earlier visit she was ensconced in her own apartment, with her things about her taking her three meals a day and hanging on the phone to her sisters, and in short, she was in more or less fair shape physically and mentally. On this occasion however, I was shocked at her decline. She had just had a pretty radical surgery, a rare and very difficult to treat form of cancer had been discovered, and discussions were underway as to what form of treatment was to be next. She had been moved back to the facility and installed in the skilled nursing area where she told us she was very unhappy because there were so many old people, so many white heads. (Mom was 86 although she insisted many times over she was 75. Her hair was white.).
The skilled nursing area did not give her privacy although when I visited she was the only person there in the room. No lock on the door. Anybody could and did barge right in. She was lying in a bed/lounge wrapped tightly in blankets like a mummy more or less immobile all day long—if she needed to move it required two or three nurses to get her out of the chair and to the bathroom. She was in some considerable pain, a shadow of her former self. She had to be turned from side to side repeatedly to stave off bed sores, although this didn’t appear to be working. Her face was gaunt and expressionless. Sometimes she talked to me; mostly she was silent; occasionally she talked to herself. Occasionally she cried, silently, hopelessly.
I attempted to carry on a conversation but it was rough. I finally simply talked and talked and talked until she caught a word or phrase that was of interest and responded. It did seem to work. But I found out that she had reason for anger and fear. The bizarre and painful interactions she had told me about were not a fantasy. They were real. When I first entered her bedroom she was initially pleasant and calm – until a tall, strong, South Asian orderly named Raj sauntered in, simpered at her and asked how she was. Embarrassingly, she wouldn’t respond. I attempted to make conversation but her antipathy was clear and at length he left. Whereupon she hissed at me :”I HATE him! HATE him!” I was taken aback. Her face twisted, seemingly quite mad.
At this point the oatmeal granting nurse had decided that since she had done me a favor it was time for me to do her a favor. Your mother, she said, doesn’t have enough clothes. Go to her apartment and get them. I bridled at this but then saw the humor in it – tit for tat. I went down to Mom’s apartment and filled up a bag of clothing, which I left for the moment on the bed adjacent to Mom’s. The next time I came to her new room I was appalled to see the Asian orderly, dancing around wearing her clothes, vamping for the benefit of two nurses. Shouting “Look at me! Look at me!” I stared at him, he cringed briefly, scowled and took them off and threw them back. On the adjacent bed
He said to me, sneeringly “Your mother had no clothes. I went and got her clothes.” When he finally left the area I checked the bag of clothes. Less than half of what I had brought was still in the bag. What could I conclude but that he had taken them. On the following day Mom seemed to be much worse. Immobile, silent, looking inward. But she also told me she hurt, quite a lot. She began to cry, silently, not even trying to wipe the tears away. I said Mom, if you’re in pain, push the PAIN button! A big red PAIN plastic button within easy reach of the inhabitant of the bed – for morphine injections. She said that she couldn’t and when I asked why, pointed through the door in apparent fear to the orderly. I guessed that she didn’t want to be in a position of asking him for anything. Or even worse, she feared some kind of punishment.
I felt a kind of rage that I never want to experience again, pushed the button, got the bastard in to the room, ordered him to give her morphine and get out. He stared coldly at Mom- she pointed at me, silently. I said yes, I hit the button. Where’s the morphine? He gave us both a haughty stare but did not argue, and gave her the morphine. Her face eased. Her tears dried. He did not return.
Mom did not seem to be conscious when soon after this I kissed her cheek, patted her hand, and got into my cab and set off for the airport again. I need to be clear at this point. For every Raj, there were a dozen polite, competent, friendly nurses and administrators whose kindness to the patients was obvious. He was a wild card. But he was unfortunately the one who lingered in the memory. One comment of hers will forever haunt me. She said as if talking to herself, “There is a door. I want to go through. But I can’t, I can’t. [Long pause] I never knew it would take so long.”
A moment when the love and compassion I had suppressed for so long, (because they had so often been so ruthlessly beaten back), came to the surface and I nearly cried myself for pity at the sad, bitter, lonely soul in pain before me. What was I hearing? I had never before heard her speak like this. She had once told me that church was for sociability, but this was belief of a higher order. Now she was on the verge of death. She was yearning to be released. She believed she could glimpse the door to Heaven, but she couldn’t yet pass through.
The funeral eulogy and tributes later said it all: Mom had done so many good works in public life, had so many friends, won so many awards, of course she was going to enter the gates of Heaven. In the transports of the funeral, it was almost possible to forget what it had been like to live with her as our mother. If I believed what I was hearing, then it was time to dispense with all my anger and hurt at her behavior throughout our lives. It was time to forgive. My painful memories were mine to deal with another time, and it was time for compassion and peace.