The following is a piece I wrote for a Storytelling event . The theme of the evening was “The Seven Deadly Sins”, and my sin was wrath:

A dear friend of mine sent me a chain email for Mother’s Day. (Don’t get me started.) It was a letter from an aging mother to her daughter asking for understanding, patience and love in the face of the trials and tribulations of aging. It asked for the same loving support that was given to the daughter as she grew up. The mother concludes by saying that all she really wants is to be with her daughter and enjoy her company. Well, that’s a lovely sentiment but, REALLY?

While the message was sweet in a sentimental, maudlin sort of way, this idealized vision of the complex mother/daughter dynamic struck me as fantasy. It made me feel in equal parts annoyed and sad. I found myself mourning for a relationship that never existed.
My mother is an emotional terrorist. (She moves through the world in a metaphorical bomb vest that might detonate at any moment, spraying anyone in the vicinity with emotional shrapnel.) And a raging control freak. There are only 2 ways to do something: Her way and the wrong way. Period. If I don’t understand what she wants done then it’s my fault. If I argue, she will argue longer and louder. And the less control she has, the worse she behaves.
She repeatedly read my journal as a teenager and said it was my fault for not hiding it. I wanted to get married in her backyard but had to change the location of my wedding because she refused to allow my stepsiblings in the house and I wouldn’t disinvite them. This is not a product of old age. Old age has just exacerbated the trait. For years, my husband has taken a certain devilish pleasure in imitating my mother by cutting me off repeatedly in mid-sentence for several minutes by repeatedly saying, “You’re wrong.” As in, “I think –“You’re wrong”. “but – “You’re wrong”. “It’s just – “You’re wrong”.
Yes, I managed to develop a sense of humor and even some peace after I was able to put 3000 miles between us, and the giddiness of living without the threat of emotional violence had become normal. Then her physical and mental health failed. And I discovered, in spite of it all, that I have the heart of a devoted daughter. I don’t know if it’s a Jewish thing, or just some sort of annoying moral compass, but I’m all she’s got and I won’t turn my back on her when she’s helpless.
So suddenly, here I am, an only child completely responsible for managing the care of my bed-ridden, partly demented parent who, while she loves me deeply, is stubborn, petulant, petty, manipulative, narcissistic, abusive and sometimes cruel. And then she doesn’t remember any of it. I could be frothing at the mouth with my head about to explode and she’s moved on to the next episode of Law and Order; SVU. I am often torn between compassion for her ill health and isolation, and rage at her bad behavior.

Now, granted, it would be difficult for anyone to adjust to being completely dependent on others, especially if you have always been fiercely independent. I cannot imagine requiring assistance to bathe, dress, sit up, and eat. And the humiliation of diaper changes…. Not to mention having a stranger in your home 24/7. That would make a person cranky. However, the extreme level of vitriol directed at these women who are just trying to do their job is another matter.
It takes a rotating team of 3 women to provide 24 hour care for my mother. I have lost count, but I think she has gone through about 25 aides in the last 3 years. I kid you not. According to her, they are alternately dumb, dirty, slovenly, speak poor English, don’t pay attention, pay too much attention, are too rough, don’t have any training…Let’s just say I’ve gotten weary of the litany.

The saga with the nursing aides started when she was in residential rehab for a few months after a fall shattered her shoulder. It was clear that she’d be too much for the regular nursing staff to handle, so I found a woman named Ruth whose business is being a health care manager for the elderly. While in the rehab my mom went through half of Ruth’s roster of aides. She was so nasty and abusive that they just refused to stay. Or she decided they were incompetent and fired them.
Back in her own apartment, the revolving door of three women had to pass through the 7th circle of hell in order to keep their job. It wasn’t long before Mom went through the rest of Ruth’s roster, basically alienating the entire Filipina nursing community in New York. It was like trying to find a forever home for a fighting dog from the Pit Bull rescue.
In addition to the aforementioned inexcusable offenses, one was accused of being a hypochondriac. One was dismissed for wearing a lotion that made my mother sick. One brought food that smelled disgusting. One went barefoot. Several were fat and wore clothing that was too tight. They couldn’t be trusted to shop for groceries or cook or manage medications. They ate all of the candy and cookies. They were either bossy and argumentative, or passive and lazy. They were nosy, thieving liars. They were incapable of engaging in conversation. They had too many problems in their own lives. They hovered, or hid in their room and had to be called.
I was present for some of the abuse during my monthly visits and it was awful. She would scream at them and order them and complain loudly about them in insulting or racist terms while they could hear in the next room. She railed about one poor woman whom she insisted made the arm rest on the silk chair dirty with her hair oil so she was banned from the living room and my mom hid the remote for the TV. (Never mind that the chair had been used by friends and family for 30 years.) It would start within a couple of hours of their arrival. I started to feel like the Yankee daughter of the plantation owner. I could do little but offer sympathetic looks and the occasional confidential apology to acknowledge my embarrassment, which was extreme. I would try to explain that it wasn’t personal, but it sure seemed like it was. How were they to know that she was nasty to everyone? It was exhausting, but I was determined. My soul was bruised from a lifetime of this shit. I was fighting for my life.
Ruth finally told me there was nothing else she could do for us because all of the women talk and they all know about my mother. Mom simply wondered how Ruth could run her business if she didn’t have any good people.
I tried an agency, but my mother threw the woman out and refused to pay her after getting in a screaming match about lying, so that was the end of that.
Just when I thought I would truly lose my mind and my ability to sleep through the night, I finally lucked upon a relatively stable situation with three women who are going to be up for sainthood. In the evening a spunky, smart Irish woman who doesn’t take any crap cajoles her with charm and humor. She only has to spend a couple of waking hours with my mom watching crime shows before she goes to sleep. I interviewed the new weekday woman myself and gave her frank and fair warning. I also gave her detailed instructions on how to properly scramble an egg. She is sweet and gentle, with infinite patience, and seems to have won my mom over by simply never arguing with her. The weekend woman is calm and strong and completely unflappable in the face of insults and some serious abuse. She saved my mother’s life with the Heimlich Maneuver when she was choking on vitamins. Of course, my mom complains that her ribs still hurt from that episode because she was too strong.
I’m keeping my fingers crossed and buy them very nice birthday gifts. While I am eternally thankful that she can afford private care, I have witnessed first hand that sometimes you can’t pay someone enough to put up with being abused. And if they don’t stay, her wrath becomes my problem again and again and again. I am at the mercy of her temper, even when it is not directed at me. I guess, in the end, I’m in the same boat as the aides. Except I can’t quit.

Anyone who has cared for an infant will tell you that, initially, they are all take and no give.  They depend on you to keep them alive and will suck the life out of you in order to get what they need. Which is everything. It is not a reciprocal relationship.  You love and care for them with the faith that, someday, they will grow into a person capable of love and empathy. Much the same can be said for caring for a parent with Alzheimer’s.  Except for the growing out of it part.  You have to accept the knowledge that there will be little appreciation for your care and sacrifice because they can’t remember your care and sacrifice.  You’re stuck in the infant stage.

My dad insisted on changing doctors after his girlfriend successfully convinced him that hers was better.  His doctor’s office was across the street from his apartment and was good about communicating with me.  The other doctor is way uptown and is an elderly European woman whose bedside manner could be most kindly described as abrupt.  As I said, he was insistent that he didn’t like his doc and wanted the change, so I made all the phone calls, faxed all the documents and, when it was all said and done, I called him to let him know that it had been done.  He said, “I really wish you would talk to me about these things rather than just making changes without consulting me.  I liked my doctor.  Why do I have to change”?  It is at this point that you have to suck up your irritation and grind your teeth at night.  And I know that if my father had any say in the matter I wouldn’t be handling his affairs at all.  So I remind him that I did it all on his say so and wouldn’t make these decisions without consulting him.  “Well, I don’t remember that”, he says.

I spent over a week in New York during the holidays.  I dragged my family with me while doing my usual sprint back and forth between my parents, visiting and making sure that the details of their lives are being managed.  My mom was watching those terribly sad ASPCA ads and talking about wanting a cat.  So, before we left town, we visited the shelter and adopted a friendly little cat to keep her company.  It was a huge success and we left Mom and the cat, Noella, snuggled up together on the bed watching TV.  Two days after returning home, I got a phone call lamenting how lonely she is and asking why I never visit.  After a few rounds of “I just visited”, “No, you didn’t”, I just let it go and said I’d be visiting soon.

You can’t need to win.  You can’t need to be right.  If your efforts are acknowledged, which does happen once in a blue moon, you just have to save it in your still functioning memory bank for another day.  And remember that your parents took care of you until you were capable of love and empathy.

Here is a little sampling of one week in my life with double Dementia.

I get a phone message on my home answering machine from my father’s girlfriend a couple of weeks ago.  She is in her 90’s, as well.  She says, “Your father is in the hospital and you have to come here right away”.  They are in New York.  I am in LA.  I start making phone calls.  His doctor doesn’t know anything about it.  The hospital doesn’t have anyone by that name in the ER.  My father isn’t picking up his cell phone, which isn’t unusual because it rings in a frequency that he can’t hear.  Eventually, I reach the girlfriend and discover that she has taken him to her doctor who, in turn, has decided to check him into her hospital.  Why?  Because his doctor isn’t good enough for him, and hers is better.  I finally reach this doctor, who tells me that my dad was experiencing nausea and was quite pale and, considering his age and not knowing anything about his medical history, she decided the best thing was to send him to the ER.  She is not pleased when I inform her that, indeed, he has his own doctor with a full set of medical records.   What he and the girlfriend didn’t remember – and the new doctor didn’t know – is that he had just been put on Arasept, a drug that can slow memory loss but can also cause stomach upset.  Case solved, hospitalization unnecessary.  However, since he can’t pass the cognitive tests the hospital social workers give him, they won’t release him from the hospital on his own recognizance.  I arrange with an agency to have an aide meet him at the hospital and stay with him until he feels comfortable being on his own.  I see dollars signs piling up, but there is nothing to be done.

He has been successfully convinced that his doctor is no good and now wants this new doctor to treat him.  I explain that if that is what he wants we have to transfer his records and inform everyone who treats him.  He asks if I can take care of it.  And can I find out if he has had a flu shot, because he doesn’t remember.

My mother, who hasn’t been married to him for 45 years, has started to regularly ask how he is doing.  She thinks he should be in a home.  I tell her he doesn’t want to be in one.  She says that people sometimes have to do what they don’t want.  The pot says she will get the kettle a brochure from the place she is staying.  She lives at home.  She calls me back and lets me know that she inquired and it turns out it isn’t the right kind of place for him.

The aides are trying to keep my father’s medications organized in a weekly pill organizer.  When the aide shows up in the morning, however, he has sometimes taken two days’ worth.  He has also pulled out the bottles from the cabinet where they have been stored to prevent confusion, and sometimes takes the meds right from the bottles.  The aides do not seem to be able to control this behavior, partly because we have not had one consistent person whom he grows to trust.

My mother will not go to see the eye doctor because she wants to wait until she is back in her apartment to see someone in her neighborhood.  She has never left her apartment.

My father calls me in a panic because he doesn’t know how he will write his rent check, his will is all wrong, and he has a letter he doesn’t understand from his insurance company.  I assure him that someone is coming next week to help with the bills, his will is fine, and I am handling the insurance.

My mother believes someone has stolen her winter coats.  I tell her to get in the wheelchair and go look in the closet, where she will see the coats.  She has to wait until the next day because the aide can’t transfer her alone.  She frets about the theft.

My father never locks the door to his apartment and calls to tell me that someone has stolen all of his winter coats.  They went into the closet in the spare bedroom, took the coats and left the hangars on his bed.  Apparently, there is an evil coat fairy about.  I have no way to verify this story and it is full of holes, but he has made a full police report and is now locking the apartment door.  I send him a down jacket.

I told my father a couple of weeks ago that he has Alzheimer’s. Actually, I told him he has Dementia and could expect his memory to get worse, because the word Alzheimer’s is so loaded. They can’t technically determine that until after death anyway, so I figured why go there. I told him that for the last couple of years when he was telling me that he felt like he was physically healthy but that he noticed big changes in his head, he was right. I used to tell him that I forget stuff all the time, too, but he knew what he was talking about.

He took the news pretty well. I mean, it’s not as if he didn’t know something was wrong. His primary concern is that he doesn’t want to be a burden. I told him that the best thing he could do for me is to allow aides to come and help him so that I know he is safe and comfortable. I also asked him if he would wear a Safe Return bracelet in case he gets disoriented outside his apartment. He was incredibly agreeable. I was a little skeptical but pleased that it went so well.

Now that a couple of weeks have passed, reality has set in. He calls to say that he doesn’t like having all of these people around. He won’t let the aide prepare or shop for food. He doesn’t want them to accompany him anywhere, unless it is a doctor’s appointment. Basically, the only thing he will let them do is clean the apartment and take care of the laundry. It is hard to know exactly how much help he needs. He can bathe and dress himself. He doesn’t cook, but he didn’t do that when he was perfectly healthy and he can get himself to the deli or the coffee shop for something to eat. However, his short-term memory is shot, he can’t pay his bills or do his banking without help, and he gets very confused. He will call me in a panic that his taxes haven’t been paid when they have, or he got a piece of mail that he doesn’t understand, or someone has shown up to work that he didn’t ask for and can’t afford. Sometimes 10 times a day. He can’t remember who is showing up when, how they get paid or who is paying. I have written it all down but he doesn’t remember that he has the information. Most of the time, the aide doesn’t have a lot to do, but if they aren’t there he sometimes gets confused and his anxiety spins out of control. While all of this is going on, my Dad’s ladyfriend, who lives in the building next door, is not well and he wants to send his aide over there. How much help is enough and how much is too much?

Ever since my parents divorced when I was 12 my Dad and I have always had an unspoken non-interference pact. He tried to make up for my controlling, overbearing mother by making no demands. There have been times when I wish he would show a little more active interest in my life or the life of my family. In the over 20 years since I moved away from New York he has only visited me once. I even bought him a plane ticket that went unused. A lot of this had to do with the travel “needs” of his girlfriend who refused to stay with us and demanded a hotel, but, frankly, it hurt my feelings that he would never just visit without her. But he left me alone, so I did the same for him. We love each other and are always happy to spend time together when I’m in the city, but our relationship has never been particularly intimate. All of a sudden I’m in his business in a big way. I demand that the apartment be cleaned and his laundry done. I try to make sure he is eating properly. I know everything about his finances, medical care and daily habits. There’s a reason he never remarried. He really doesn’t want anyone on his case about how to live his life and conduct his affairs. Now, that person is me and neither of us is too thrilled about it. We are both trying to be patient with each other, but I feel a storm brewing and think this will get more difficult as we go.

For years now, my mother has been the focus of all of my caretaking energy and my father, who is actually nine years older, has quietly taken a back seat. Until now. Dad just turned 94, lives independently and, until recently, has been in great health. He was running a homeless feeding program, volunteering at a hospital and taking care of his long time “ladyfriend”, who has many health issues. I’d have a couple of meals with him while in town dealing with my mother’s issues and he was always very understanding about the demands her condition put on my time, as he had always been when she was healthy and put demands on my time.

Everything changed this past year. My first clue that things weren’t as peachy as I imagined was when he fell ill with a skin infection and was hospitalized for a week. I went to his apartment to pick up a robe and a change of clothing only to discover that he had been living in squalor. There was a robe behind the bedroom door that was stiff and caked with dust. The linens clearly hadn’t been changed in a long time and were beyond salvaging, everything was covered with dirt and dust, and there were papers on every surface. I had encouraged him to hire someone to clean in the past, but he had always brushed it off and told me he was taking care of it himself. It took my daughter, a cleaning lady and me three days to get the place in livable shape. I bought sheets, pillows, towels and a vacuum cleaner, took everything to the laundry, and he promised he would hire someone to help keep it up.

In February, during one of the worst winters in recent memory, he slipped on the ice while trying to bring his girlfriend flowers on Valentine’s Day, dislocating his shoulder and whacking his head really hard on the pavement. Though the scans didn’t show any damage to his brain, he remained confused and forgetful months after the fall. I took him to a neurologist who told us that he had a normal 93-year-old brain with some natural atrophy, but nothing to worry about. She said she hopes her brain looks that good at 93. He wasn’t satisfied, but I told him that we couldn’t fix something that wasn’t broken.

In March, he went to the ER with what turned out to be a kidney stone. The social worker at the hospital called me to ask if he had help at home because he seemed quite confused. I explained that he didn’t, but asked his girlfriend’s daughter to pick him up and take him home so they would release him. Over the course of the next week or so, he ended up in the ER twice more because he was in pain from the stone, confused and frightened. At this point, his doctor called me and said he didn’t need to be in a hospital and, in fact, what he needed was an aide. I scrambled to find someone to stay with him, at least until he felt better, and the doctor made an appointment for him to see a Neuropsychologist who could assess him for dementia.

Fortunately, I had a visit planned and was able to take him. She spoke with both of us for an hour and then did a standard two hour assessment with him alone. I was finally coming to grips with the depth of his confusion and memory loss. He was clearly not okay. By the time it was done, he was exhausted, completely wrung out and discouraged because he felt he had performed poorly on the test. For a while now, he has said that he feels like a 20 year old from the neck down, but terrible from the neck up. I used to laugh it off and tell him he was doing great for a guy his age. I was beginning to see his point.

A couple of weeks later I received a call from the neuropsychologist with the news I had been anticipating. My father has significant cognitive loss in all areas and has been officially diagnosed with Dementia, probably early Alzheimer’s. The “probably” is because it is impossible to definitively diagnose Alzheimer’s until autopsy. I will talk to him about it when I visit in a couple of weeks. It doesn’t seem like the kind of conversation you should have on the phone.

So, here we are. I will embark upon arranging care and making a claim on his long term care policy. Another chapter begins and I take a deep breath as I consider being responsible for the care of both of my parents.

Coaxing my mother out of the bed that she hates and into a wheelchair (that she hates) is a tricky business. As much as she complains about the bed, she doesn’t see the point of getting out of it. The idea of being able to get out of the bedroom, let alone the apartment, is not a strong enough pull to counter the inertia of staying put. She was given a hospital issue, standard wheelchair, and complained that it is too uncomfortable to spend time in. I’ve tried it and I have to admit that comfy is not the word that comes to mind.

So I found the Cadillac of wheelchairs. It has a headrest and a footrest. It tilts back in a V so she can get pressure off her spine and not slide out. It has extra padding. And it is narrow enough to fit through most doorways. Huzzah! Miracle of miracles, she actually said it was comfortable. However, she still doesn’t really want to use it. If you spend all of your time in bed, you’re not going to feel great when you first sit up and shift your center of gravity. I keep waiting for her to reach her boredom limit, but am not sure anymore that there is one.

Another issue necessitating the chair is that she hadn’t had her hair washed in 6 months. No, I’m not exaggerating. She never even complained about it. This is a woman who was always impeccably dressed and coiffed, with never a hair out of place. Who is this person with filthy hair who spends all day in a bathrobe? The person I knew as my mother is dead and this is who has taken her place.

Prior to getting the feeding tube, her hairdresser would come over once in a while and wash her hair in the kitchen sink while she sat on a stool. It was a little bit of an ordeal, but manageable. The feeding tube made it impossible to do this, and after a disastrous attempt with her aide trying to hold her over the sink, she gave up. I tried to find a salon that caters to disabled people and, shockingly, such a thing doesn’t exist. I went online and found an inflatable basin and hanging water bag, meant to be used for washing hair in bed. She refused to try it. The situation was becoming desperate until, finally, the new wheelchair arrived and, with some creative jiggering, the blow up basin, a hanging bag of water and a plastic board, the aide was able to get her into the bathroom and tilted back over the sink. Whew. Next problem.

My mother needs an adjustable bed. Being fed through a tube requires that you not lay flat, and the aides have been struggling mightily to keep her propped up enough so that she does not get sick. She is cranky and uncomfortable, and they are all going to wind up with back problems from the lifting and shifting. She does not want the bed. She loves her mattress, which is old and hard as a concrete slab. I order it anyway and tell her she should just try it.

It arrives and is the answer to everyone’s prayers, except my mother’s. The head and legs lift, it has a massage feature… For God’s sake, I want the bed. She wasn’t in it for 5 minutes before she hated it. She then started a major offensive campaign to get rid of it. Now, she is a clever woman, and extremely determined. Through most of her life she just fought until she got what she wanted and it was a very effective strategy. I told her to call the doctor and have him explain why she needs the bed. She did and promptly discounted everything he said. She wanted the company to come get it. They wouldn’t. (I had neglected to mention that it was not returnable.) She tried to get the handyman in the building to dismantle it. He said he didn’t know how. She knew the old mattress was stashed in another room and she wanted it back, right now. I, of course, am scurrying behind the scenes calling everyone before she gets to them to let them know that under no circumstances are they to help her get rid of the offending item. This went on every day for 3 or 4 months. Seriously. Not a day passed without discussing how much she hates it and how uncomfortable she is. The fact that anybody who lays in bed 24 hours a day would be in pain does not stop her from blaming it on the bed. It is the source of all evil.

For the last few years, since I’ve been tracking such things, my mother’s eating habits have been atrocious. She never had a very big appetite but it had shrunk even further and sugar and fat had become her main food groups. She’d go into the kitchen in the morning and have half of a small glass of juice, half of a cup of coffee and half a muffin or pastry of some sort. This would take her about 2 hours to consume. At about 4:30 she’d have a little soup or guacamole and chips or a quarter of a deli sandwich and that would be it for the day, except for occasionally snacking on candy or Cheetos. So weird, as she had never had a sweet tooth or eaten much junk food, as far as I knew. For a while her night aide would bring prepared foods and could get her to eat a little while lying in bed with a towel draped over her chest.

That all stopped last October. She complained that food got stuck in her teeth, that it repeated on her and got stuck in her throat, that it had no flavor or was too salty or too sour. I started getting calls from the aides that she was refusing everything and when I visited she was no longer willing to eat foods I prepared that she usually liked, or have a meal with me in her dining room. She was also refusing to take her meds because she was scared of choking, and with her colitis, dementia, anxiety and depression untreated, things started to spiral downward quickly. As she became weaker her confusion and agitation increased and it became clear we had to get to the bottom of what was going on or she would perish.

The aide took her to see the GI and he sent her directly to the hospital, as she was dehydrated and malnourished. I hopped on a plane to NY and sat with her for several days while she was tested and probed. Together with the aides, also in attendance, I tried to keep her calm and to make nice to the nursing staff, who were being mightily abused. Eventually, it was determined that the muscles in her esophagus were not operating properly and the food was not being pushed down to her stomach. They performed a procedure to stretch the esophageal muscles in hopes that it would help, but the doctor told us that there aren’t any really effective treatments for the condition and she would probably need a feeding tube inserted in her stomach in order to get enough nutrients. This was met with an absolute refusal, so the doctor agreed to a compromise. She could go home and try to eat enough calories to maintain her health. I flew home, she returned to her apartment freshly fed and hydrated and we waited for what was next.

Two weeks later I was back on a plane because she had refused to eat and we were back at square one. The doctor said she had to go back to the hospital and she refused, at which point he made it clear that if she chose to stay home she was choosing to die. Initially she said that she wanted to die, but I don’t think that was really the case. We finally convinced her to go by getting a room on the hospital’s Concierge floor. This is the Four Seasons of hospital experiences, not covered by Medicare, where the well heeled are cared for in wood paneled rooms with flat screen TVs, concierge service, special catering, extra nursing staff and a snack bar for visiting guests. (Side note: I am profoundly grateful that we are able to do this for her.) She hated it all, of course, and was as nasty as ever to the nursing staff, who seemed accustomed to the whims of the wealthy. She was sick and scared and every 4 hours someone was trying to get blood out of her collapsed veins. She became increasingly irrational, screaming at everyone, accusing doctors of lying and calling them impostors, refusing care. It took 4 days and everything I had to convince her that she must get the feeding tube. The doctor said that it would be no big deal, it would be hidden by her clothing, would be painless and she would be getting all of the nutrients and medications she needs without the pressure of having to eat or swallow pills. If she starts to eat again, it is entirely reversible. Sounds great, right? Well, the procedure went fine, but the aftermath was horrible. When they gave her the feedings in the hospital she vomited. It was clearly too much for her tiny capacity. By the time they released her a week later, rather than 4 easy feedings through the tube with a syringe, she was on a continuous feeding drip from a bag on an IV pole. In addition, she was expected to be at a 45 degree angle at all times to avoid aspiration. This was not the way it was supposed to go. She was now, either throwing up, burping or feeling nauseous because she refused to allow the aides to keep her propped with enough pillows. I had to beg them not to quit because the abuse was so intense. I did not think it was possible to reduce her quality of life further but apparently we have succeeded. Should I have allowed her to starve herself to death? I don’t know, but here we are and now we have to deal with it.