Category Archives: My Mom

What I Found in the Nursing Home

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I wrote this a few years ago, when my Mom was still alive.

I suspect we most clearly demonstrate who we are when we respond to the weakest, the most vulnerable, the least pretty, the unwanted. I think I am beginning to learn who we are via the modern geriatric facility.

There are certainly all kinds of people to be found at work there. There are people who do their jobs and go along to get along with the culture they’re plunked in; and there are people who go about their jobs with objective integrity, beholden to no one but the source of the highest truth they recognize.

Thank God for those people. I think the culture in which they work is making them swim upstream.

My mother is in her upper 90’s. Until three years ago, she lived alone. She needed no medication until she was over 90. She has lived a life of determined independence and no nonsense.

At the same time it was a life of willing service and self-sacrifice. Her one marriage was no picnic and she usually worked alone. She raised six children and helped cared part-time for several of her grandchildren. Her direct descendants number over forty. It has been a self-determined life of solid accomplishment.

The mind of this housewife was more sharp and active, her judgements on current events more insightful than many much younger, who would think themselves much more in-the-know.

Then, mini-strokes, a stroke. Dementia. There is no short-term memory. She is helpless against emotional vicissitudes.

We cared for her 24/7 in her home for three years. My siblings and I and three aides divided the time. She used a walker and got around in her home. She ate well, was healthy, and watched a lot of TV. When this lady who never went to bed caught a bug and ended up there nevertheless, she recovered but still couldn’t sit up in bed. We couldn’t do for her what she needed, she wasn’t going to get up, and she was developing a pressure wound.

At the same time, she was finally running low on the money my Dad left her thirty years ago. In a little while she would not be able to pay her bills or hire the aides. So it was time. Time to go to a home. They would take all she had, and care for her for the rest of her life. She would have rehab, treatment for the wound, and a home til the end. That, to my understanding, was the deal.

Unfortunately my siblings and I were under a misapprehension that a place which operates for the stated purpose of caring for elderly people is prepared to care for elderly people. That such a place should not be surprised when elderly people are people: that they are imperfect, retain their personalities and independent thoughts; nor when they are elderly: that they are cranky, ill, difficult or have dementia. When they are not entirely in control of their feelings or their actions, when they are not entirely compliant.

My mother couldn’t remember where she was or why she was there. When we weren’t there to answer her questions she filled in the blanks with invented content. The content was invariably paranoid. She reacted to her invented narratives–she was angry and difficult. She became belligerent. She tried to escape; she was going home.

She was not being a jerk. Her brain was wearing out. She couldn’t remember.

First they tried two medications. They didn’t work. The last few days, she was so heavily drugged she could hardly stay awake. But she never moved off topic: going home.

So they kicked this 96-year-old wheelchair-bound woman with dementia out of their place. Take her somewhere else. How quickly can you place her?

In other words, they took her in because she had dementia, and they kicked her out because she had dementia.

This private facility has a long waiting list. They could easily fill her half-room. And that’s what matters: all beds filled with people who aren’t much trouble.

We move on to Home #2. It is a state facility and for her it’s the last option. She does not know this, of course. What she knows is that she’s in another unfamiliar place, she can’t remember why she’s there, and I keep telling her she can’t go home just now. It’s bare and impersonal, and there are men with dementia who are permitted to roam into her room, mess with her stuff, and roam back out. When we arrive she usually has been looking for me all day. She’s fretting that someone told her I was on another floor and I had to go out. Or I’m finally there to pick her up from the store; she forgot to bring money. Or they arrested her and she wants to know how much she needs to get out.

The other home was homey. We personalized her space and everything stayed put. In Home #2 we cannot personalize the room. Her belongings have a way of wandering off.

One evening in week two, I am in the open bathroom washing my hands. I hear an aide telling my mother, disrespectfully and forcefully, that she must go to the bathroom and get on her nightgown now, as though she is an defiant child and the aide is an exasperated parent. I come around the doorway to find the aide standing over my mother behind her chair, with her hands on my mother’s arms, struggling with her. I still don’t understand what the aide was trying to accomplish.

Involuntarily I make WHOA-what-the-heck-are-you-doing sounds. The aide gradually backs off her manhandling but seems irked that we aren’t backing her up. She thought we would be cooperative in getting my Mom changed for the night. (By the way it is 7 pm.) She leaves the room.

I report this to the charge nurse and I am approached by an ascending order of supervisors to recount the incident. Every one is focused on the necessity for my mom to be toileted according to schedule. (I should have pointed out that my Mom is mostly continent; she will tell them if she needs to go.) Two days later, we meet with a higher supervisor and recount again. She agrees that the aide’s attitude and actions were all wrong. But my mother needs to be toileted at a minimum of every eight hours or all sorts of bad things will occur.

I point out that a young, fit person wrestling with a 96 year old woman in a wheelchair might cause bad things to occur as well. I am quietly puzzled that she seems to be more concerned with charges of neglect than charges of abuse. I press the point politely: what happens in the case of a non-compliant patient refusing to be toileted after eight hours? The answer: we must, and do, force them.

My mother was not compliant and would stay that way. It was the core of her being. She was old and weak but she thought she could take anyone. Doesn’t anyone else see the potential for harm?

Let’s be honest: the staff, the family, the culture– we see the nursing home as a waiting room for eternity. It is unspoken, but we actually perceive some human beings as unwanted.

Should it be that a good person who’s lived almost 100 years faithfully devoted to others, at the time when she is most vulnerable, weakest, most helpless, should suddenly have to adjust herself to other people’s priorities? Shouldn’t someone with 40 descendants be able to count on as much reciprocity as she needs? Is it countercultural to expect that someone in the most dependent part of her life should find that her world responds with that which she requires?

I contrast what I see every day with another scenario. My Mom surrounded by family, people she remembers and trusts. Feeling secure in the center of someone’s home. Her needs tended patiently for as long as she needs.

We did just this as long as we could. My mom had physically deteriorated so much that we could not adequately care for her. Even accompanying her in the shower resulted in mini-strokes. Soon after entering the home, it became clear that she needed medical expertise close at hand. The goal became: someone visting every day to orient and reassure her.

But institutions promote accomodation. Our default is the warehouse for people who are not easy, not pretty, not fun, not independent.

My Mom is so dependent, and yet she is very independent. Her current context responds unfavorably to her independent attitude, even while they resentfully suffer her dependence. One spends a lot of time staring at the ceiling in the dark, trying out plans for a better situation. But I’m afraid such plans are made difficult by the status quo and the desire we have to get on with our own lives, uninterrupted by someone else’s needs.

The real question: what does each of us do when the context tells us a given level of care is good enough, when the environment requires and expects a given level of care? How many of us decide our actions are adequate–or even good–because we have met the standard expected by the culture in which we work? And how many of us have a higher independent standard which requires a higher standard of care?

Won’t most people accommodate the context in which they work? And what if that context does not address the patients’ needs but some institutional self-interest?

I don’t want to suggest it’s all bad. By far most of the workers I have observed are doing their jobs with integrity and care. They try to relate to my mother kindly and she receives good care. Recently, they found a med which keeps her calm and un-agitated without making her druggy. They’re only people after all–trying to accommodate someone who is belligerent is just about impossible, and dealing with a pleasant patient is much better. So my mother gets along with her caregivers now, much of the time.

But I have seen what we human beings tend to do when we perceive the context we’re in as a settled given: we accommodate. And if the given expectations we’ve accepted are being challenged, the challenger too must be caused to accommodate. Only the few will put the needs of the challengers, like my Mom, before the institution’s expectations, because they act according to an overriding law.

Memories of Hard Times

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I was standing in my grandmother’s living room, full of summer afternoon light. I heard Nana in the next room, her bedroom, talking on the phone to a friend. I remember clearly what she said: “Those kids are between the devil and the deep blue sea.”

Glib, dramatic, I thought. I was surprised at her summation of my circumstances. I didn’t feel myself to be in such a predicament. “Between the devil and the deep blue sea” is an archaic expression now. If you are in that place, you are trapped between two very bad things. There’s no good option. 

I was 12. My mother and I had just moved from our big old suburban house to my grandmother’s apartment for what would be about three months. One late spring Sunday morning a couple of weeks earlier, my mother woke me with the news that we were going to stay at Nana’s. That is all she told me. My mother and older sisters spent the morning packing up some of our necessities while I wondered what was happening. I did not ask any questions. While I went out through the front door I remember looking through the dining room at my father, standing in the kitchen with his back to us. I remember thinking: “I’ll be back soon.”

We left my father and my two older brothers back in the only home I had ever known. We were gone for three years.

In my family, we didn’t talk about things. I was the youngest of six children, shy and quiet. That day, nothing was explained to me but I was not totally in the dark. Though I would never have conceived of such an upheaval in our lives, my parents’ separation was not much of a surprise. 

In my earliest memories, my parents barely spoke. There were no smiles, no pleasant relaxed moments. Occasionally there was fighting–verbally. It might be late at night, after I was in bed, on a school night, or just before a swim meet.

I hurry to add that both my parents cared for us and did not direct that negativity toward us. My mother was particularly warm and maternal toward me. But the effects of their own strife upon us was perhaps a blind spot.

I was a child who went with the flow, a good and compliant child. The people around me were the ones with power. This is how I perceived the world. I went along for the ride and kept a tight lid on my reactions.

Looking back as an adult, I can see how terribly anxious I was. I was afraid of everything. I was extremely quiet and easily overwhelmed. I never felt free to express myself. Once, in elementary school, I asked permission to go to the bathroom and was told to wait. I peed on the floor sitting right there at my desk. I was not a toddler; I was in third grade. I didn’t have a clue that I was carrying around a metric ton of stress. My anxiety needed an outlet somewhere.

I could not see myself. I was not self-aware; I couldnt evaluate my situation nor my own reaction to it. I didn’t know I was stressed.

I took whatever came my way. I was adjusting to living in Nana’s apartment, and to the idea of looking for an apartment for my mom and I, and my older sister, who was away at college most of time. Of starting next fall to a new school, still painfully shy, where I knew no one.

I was fine, I thought. What’s Nana talking about?

We Are Haunted

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Most of us are fascinated by accounts of hauntings. I know people who believe they’ve been visited, in some way, by a departed person. Genres of literature and film are devoted to the idea that the dead interact with us. I do not believe it.

I do not believe in ghosts. I do not believe that dead people haunt us. If there are supernatural visitors breaking through to our physical existence, they are not people who have passed on but something else.

But I think I understand why human beings have always imagined that they were haunted. It’s because we are haunted.

My mom passed away a year and a half ago at the age of 96. She had lived a full life but she was spent. We had time to prepare ourselves and it was not a shock, neither do we have the regrets of wondering why she had to die.

And yet I am, more or less, haunted. She visits me many times a day. She is with me, or more precisely I am with her, at another time and another place. I find myself in her house watching TV with her, or sitting by her bed in her room at the nursing home.

Or I am living at home, because I’m younger than I am now, and my mom is in the kitchen baking. Or watching her stories while she irons. Or cutting out a skirt.

It’s been over a year since I’ve been in her house but I can close my eyes and walk into her house and I can smell its familiar smell and see the sunlight coming in the bay windows and feel the temperature of the air and hear the TV in the next room. I can go upstairs, I can feel the emptiness of no one being up there anymore, I can hear every creak on the steps, and see every box and bag and pile on the third floor. It is all vivid, fresh, and real, like I was there an hour ago.

I can distinctly hear her voice, I can hear her faux-operatic singing of Happy Birthday to You over the phone. I see her crooked fingers holding a cookie at the breakfast table. I see her straight fingers applying foundation to her face as she gets made up at that same kitchen table, getting ready to catch the train into center City to use her season ticket at the Academy of Music.

As I go through my day, she is there. I am in my kitchen and I look through my window toward her house, and for a split fraction of a second, almost wonder if I should walk down and see her.

I am haunted by my mom because she was the first person I lost who I could miss in this visceral way. I helped take care of her during her last three years and I saw her almost every day. Every day, navigating my way through the ever-changing stream of her dementia. I needed to map that stream, to understand its habits and its surprises, in order to relate to her in a way that made sense to her. In other words, I was trying to think her thoughts.

We are haunted because we still feel the presence of people we have lost. We are haunted by their presence because our senses still remember them as though they just left the room a minute ago. We are haunted by their absence because we miss them and only our factual processes understand that they are gone for good.

Are we haunted because we want to be?

I think the idea of hauntings took root because we really do continue to experience being with our lost loved ones. My mother was not someone whose memory will easily fade.

Grief is Real but Memories Are Too

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Sometimes time crawls. I am frozen.

The empty space is just a matter of fact. Everything else goes on. The landscape changes. Her house, my house, which I see out my front window, becomes less recognizable by the day. I can never go back in.

Distracting images float into my thoughts regardless of what I am doing or thinking. The last time I saw her, realizing just how very much I will miss her crooked fingers.

How can someone with such a huge presence be gone?

In my mind, I often find myself in that room where we found her nearly every day. We are watching M*A*S*H or looking vainly for a good movie. I am watering her plants and my husband is shooing away one of the wandering residents. Or we are wheeling her out of the dayroom to the gazebo, an escape she loved for as long as possible, to watch the sky over the trees past the other resident buildings.

Or she is still at home. We are sitting with our feet up on either end of her couch recliner, watching episode after episode of Law and Order, or old movies on TCM. Later I’m in her kitchen baking this week’s cookies.

Or I am sitting by her bed on that long Friday. On Saturday my siblings are arriving gradually, one by one, faces distorted briefly as they come in. I’m staring at the picture over her bed in which she stands between my two brothers looking fully twenty years younger than she was.

Mostly I find myself just hovering there in the room with the afternoon light slanting in then dimming toward evening. My husband and I are just with her.

How can such a huge presence be gone?

Here is a conversation from one of those afternoons under the gazebo. My mother, with dementia but articulate as could be, had been indulging in a confrontation with some of the staff. Now, calm:

Mom: What are those buildings? It looks like a school.

My husband: No, it’s just some of the other buildings here.

Mom: …Maybe they’re teaching manners to the elderly.

My husband: They assume they already have them.

Mom: … …Obviously we don’t.

She never lost her true self. I have stories.

Now, no matter what happens, or what I do, I just cannot feel right. I imagined that grief was a little ball of black twine inside of me. I’m getting along OK, I don’t feel any way in particular, I’m just getting through each day. I will feel normal in awhile. Just wait.  I am frozen.

Then it occurred to me that my image was wrong. The ball of grief is not a little thing inside me. I am in it. My world is inside of grief.

I can only wait until it wants to go. The grieving person does not control the grief process. No matter how prepared you were for your loss, grief takes its own course. You are at its mercy.

It’s helpful for others to know this. Rather than trying (however sympathetically) to tell someone how to get through (or get over) their grief, we should walk with them through it. No matter how long it takes, or how unexpected the path. Just be kind and present. There’s really nothing else you can do. Or maybe the best thing you can do is to leave them alone with it and let them work through it.

I wish I had written down more of her memories. Let me tell you a little about my mom from my memory.

She was creative. Before she became too impaired to sew anymore, she had been sewing for about seventy five years. She could make almost anything. She never followed a pattern without creating her own alterations. My friend and I were looking at tote bags today at Hallmark and I remembered the huge, wildly printed, sometimes waterproof-lined totes my mom made. With handles that would never fall off. She loved color and loud prints. She was always stylish in her one of a kind handmade dresses. She made her hats, she made our Easter dresses and spring coats every year, she made my sister’s formal prom dresses (several), she made the wedding dresses for all three of us Mercer girls. She loved to make my children clothes: flannel lined denim baggy jeans with huge pockets and elastic waists, delightfully patterned little girl dresses, baby clothes, doll clothes, roomy fleece sweaters with reindeer and snowflakes.

How many of her carefully sewn gifts do I still have? Not that many. How did I let them go? This feels like infinite regret now.

She also loved cooking and was creative there too. There was a health-conscious era where all baked goods had what we called bark and gravel. There was always cake and the smell of cinnamon buns or cookies in the oven signaled the holidays. I have carried on her baking traditions, so at least that isn’t lost.

At the center of my mother’s personality was a diamond hard gem called Self-Determination. Maybe it was really called Opposition or You Can’t Make Me. She died with advanced dementia but that nucleus at the center of her being was untouched.

To the end she knew two things. She knew her children and their children, and she knew nobody was ever going to make her do anything she didn’t want to.

She gave up going to bed when her dementia was advancing. No amount of persuasion would  get her out of the recliner and into bed. So there she sat 24/7, dozing sometimes, awake sometimes, regardless of night or day. I once marched over to her house at 2am to convince her to get into bed. By 3:30 I retreated home, angry, exasperated and unsuccessful. The more I persuaded, no matter how I persuaded, the more her heels dug deeper.

She never gave up the idea of going home once she was in the nursing facility. This got her kicked out of the first place because she, with her wheelchair and strength of a kitten, was actively trying to escape. The second place had the locked-down unit where they’re supposed to be prepared for wanderers and escapists. They had to invent new safeguards and change procedures after she arrived. She pulled the fire alarms. They had to hide the elevator button.  She was going to bed when she wanted.

In her last conversation, aware that she had had a stroke, confined to bed, she was still asking if I thought she’d be going home soon. She. Was going. Home.

This is one of my favorite Mom stories from my childhood. She would not mind my telling it. My mother was well educated, articulate and intelligent. But few things in the neighborhood made my mom madder than people letting their dogs “go” on our property. If she caught some dog walker allowing their dog to do its business in our yard, or even our sidewalk, they would get an earful.  One day she saw a neighbor lady from around the corner doing this and my mom had had it. When the lady tried to justify herself my mother asked her: “How would you like it if I sent my kids over to go in your yard?”

Neighbor lady went off shocked. Little did the woman know that my brother loved this and would have been glad to do it.

I could fill a book with things to tell you about my Mom and maybe someday I will. She deserves it.

Never Give In

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We were asked to move my Mother to a second nursing home because she became too difficult. She has dementia. She cannot remember that we’ve been taking care of her 24/7 for the last three years. She cannot remember that my Dad’s been gone for 30 years.

No one’s going to tell her what to do or keep her against her will. They tried calming her with a mild sedative, then a stronger one. The stronger one effected her paradoxically; it enraged her. They eliminated the drug to no avail. She made for the exits. They put an alarm band around her ankle. But she kept trying to make a run for it.

So the powers-that-were politely asked us to find her a new home.

I wanted to say:  She’s a ninety-six year old woman in a wheelchair with the strength of a kitten. Was she too much of a challenge?

I could have argued but I realized the truth: they were not willing to handle her.

She’s articulate, clever, intelligent, sarcastic. She also has almost no short-term memory and is often confused. She can get belligerent. But I thought nursing homes were where one went to get care when one became disabled, particularly when one was cognitively disabled.

Apparently not so, unless one is cognitively disabled in a compliant sort of way.

In the span of six days at her new place, she has tried to take the elevator down, pulled the fire alarm, and threatened to press charges against the staff. She doesn’t cooperate even when it’s to her benefit, hanging on to the table’s edge when they’re trying to pull her chair out from where she’s wedged herself.  Never give in. She’d make a wonderful protester.

To be fair, when we pushed the elevator button to go home, there was a bag taped to the wall next to it. Yes, they have installed the fire alarm right next to the elevator button. In a dementia unit.

My 96 year-old Mom: kicked out of one home, making the second home create new procedures.

When we get there, she gradually calms down, she jokes, she brags of her badass-ness. We re-orient her, we reassure her. We talk about her grandchildren. We explain that she cannot take care of herself at home right now and so she needs to be there. We take her out to the gazebo. We manage to persuade her to submit to another overnight, we promise to be back next day.

And try to be nice to the staff; they’re just doing their jobs. We’ll be back tomorrow.

This must be repeated every day. Her kids are her only link to stability. She cannot remember new people so everyone else is a stranger. Sometimes our reassurance and persuasion go down fairly well, sometimes it takes hours, and sometimes she still isn’t buying it. She’s going home.

She will never not want to go home. She is nursing home-resistant. I hope the new place is ready for permanent non-compliance because she is not going to assimilate.

I am trying to plant an idea in her mind. Although it may seem cruel, I’m trying to suggest that when you are almost 100 years old, it’s no shame to lean on others. It’s no shame, and maybe even necessary, to accept some help. She could be so much more content.

So far it’s not working.

 

Just a Tiny Bit About My Mom

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When my Mom was 39, she had her sixth child, a girl. Me. When I was 39, I had my sixth  child, a girl. We gave her my name. Here is that daughter and my Mom, last year.

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My Mom is so stubborn she defies medical science. With each doctor’s evaluation, she is declared healthier than she was before. Her cardiologist doesn’t want to see her til the fall. Almost a year ago, we brought her home from a few months rehab. Before that she hadn’t been in the hospital since I was two. She wasn’t on any medication until about five years ago.

Her physical health is improving.   Apparently, she is in better health at 95 than she was at 94.

Take that, Doctors. Think you’re gonna treat her like an old person.

Happy Mother’s Day, Mom. I don’t know who deserves the honor more.