Sliding

Monday, February 29, 2016

It’s that time of year again: Mom begins to slide incrementally further down. It’s too and windy cold for walks and mom strength is at an all-time low. Today, her CNA from hospice mentioned giving her oxygen and bringing in a hospital bed. Seems a little premature. Am hoping the spring and walking the neighborhood will revive her, but she is 99 years old. Mom is wearing down.

And naturally, I am remorseful. I scolded her this morning for calling me incessantly. She fugued all morning about it:

“Did I wake you, Rob? Do I call you, Rob? I don’t call you, do I?” (and on and on and on)

“No, mom. You called me every five minutes.”

But tonight, all is quiet, disturbingly so. Mom is asleep in the next room. Val is asleep in my office next to me. And earlier, I was practicing embroidering letters onto her clothing for her trip to respite next weekend. Wasn’t having much luck, but fortunately, I will be taking a class on Wednesday to master the finer points of the Bernina. My last sewing machine was a Kenmore. It went forward, backward, and zigzag, which was as much as I needed back then. The Bernina, Lord help me, requires reading a manual. I have been examining this manual, but it’s not as illustrative as it might be. And the YouTube videos are not very helpful at all. They were designed to meet the needs of a worldwide market and are done entirely without dialogue.

Respite, as it turns out, might be up in the air, and labeling mom’s clothing might be moot. If mom doesn’t rally, I won’t be packing her off anywhere. Right now, my only concern is seeing to mom’s comfort. She is so tired, one might think she had run a marathon. Sleeping more, of course, attends aging, at least at mom’s stage of life. Perhaps today’s winds took their toll, even though she wasn’t out in them. Still, they kick up stuff, and living close to mushroom country doesn’t help.

Let’s see what tomorrow brings. The uncertainty is difficult.

Hospice to the Rescue

Monday, February 22, 2016 

Mom has taken to falling more frequently, a disastrous turn of events that can spell her demise. Several nights ago, she hit her hand on the wheelchair parked nearby. We have since moved it, so that mom will have a clear field. But there is still the carpeted floor, which although carpeted still proved a problem. Mom now has a small sore on her buttocks. A pressure point, I assume, that also bore the brunt of the fall. I administered Manuka honey wound dressing and added a soft patch, hoping that would do the job. But yesterday, mom complained of pain. She also seemed cranky. Fortunately, I was able to call hospice and seek advice from our very capable nurse.

Within 15 minutes, L arrived at our home and administered to mom. She placed a derma patch on mom to keep the sore protected and dry until we could examine it again today. I think the patch will serve its purpose and allow the wound to heal quickly.

Well, “it’s always something,” especially when dealing with the very old. But we keep finding solutions. Still, I was following the story of Joey Feek, a young country singer who has a heart for the Lord. Joey is beautiful, has a lovely voice, a very happy marriage (she sings with her husband, a guitarist), a delightful 2-year-old child, a fabulous farm, and is dying of cancer. Joey’s mom sang with her in one concert, a song about supper and going home. I cannot imagine how her mom was able to sing without crying. But she managed. One of Joey’s songs was nominated for a Grammy, and she was able to celebrate that piece of happy news with her husband.

Fact is, we are all meted out different dishes. One may wonder why, but there are no answers here on earth. Whether we will ever have the answers is beyond my ken. I doubt the answers will matter. But mom is 99 and hanging on. Joey Feek is being given more and more morphine as the days and her illness progress. The one thing I could not tolerate is having my mom in pain. Fortunately, we are far from having to administer morphine and may never have to administer it. But even small amounts of pain are intolerable. Joey has her husband Cory who will help keep her comfortable. Mom has Rob and me. It’s still a boatload of work.

 

 

Notes/last line corrected

Thursday, January 7, 2016 

I work out of my home. My office is next to my mother’s room, the erstwhile dining room. The only remaining vestige of a dining room is the chandelier, now hoisted as high up as possible, and some oil paintings. Mom sits in there most of the day on her rocking chair, watching television. Sometimes she sings—the same songs over and over and over again, even while watching the game shows. She knows only the first lines and usually hums the rest. I have tried printing out the correct lyrics in large print, but she ignores them and merely laughs and offers her usual response, “Oh yeah.”

Someone once cheerily suggested that I enjoy this time together with mom and sing along to experience the joy of it all and deepen our relationship. As mom’s musically active times vary through the day and night and often coincide with my work time, singing along is rarely an option. And I, for one, am loathe to sing along in the middle of the night when what I seek instead is a decent night’s sleep. I sometimes play the piano for mom, who talks through it. And I play CDs, but mom neither listens nor enjoys them, but sings her own songs. She is truly a woman who sings and dances to her own tune.

For the nonce, I have my CD player turned up so that I can better hear Wolfgang Holzmair sing Beethoven folk songs and nothing else. Sanity dictates such measures.

Notes from the Madhouse

 

Thursday, January 7, 2016 

I work out of my home. My office is next to my mother’s room, the erstwhile dining room. The only remaining vestige of a dining room is the chandelier, now hoisted as high up as possible, and some oil paintings. Mom sits in there most of the day on her rocking chair, watching television. Sometimes she sings—the same songs over and over and over again, even while watching the game shows. She knows only the first lines and usually hums the rest. I have tried printing out the correct lyrics in large print, but she ignores them and merely laughs and offers her usual response, “Oh yeah.”

Someone once cheerily suggested that I enjoy this time together with mom and sing along to experience the joy of it all and deepen our relationship. As mom’s musically active times vary through the day and night and often coincide with my work time, singing along is rarely an option. And I, for one, am loathe to sing along in the middle of the night when what I seek instead is a decent night’s sleep. I sometimes play the piano for mom, who talks through it. And I play CDs, but mom neither listens nor enjoys them, but sings her own songs. She is truly a woman who sings and dances to her own tune.

For the nonce, I have my CD player turned up so that I can better hear Wolfgang Holzmair sing Beethoven folk songs and nothing else. Sanity dictates s

High Anxiety

December 30, 2015

This was a particularly challenging morning. After 3 weeks of birthday gatherings—6 of them, with a total of 20 visitors—mom has reached her limit. I wanted to make her 99th birthday a special time. I thought having friends and relatives come visit would bring her joy. After all, there are no guarantees that mom will have a 100th birthday. But the festivities came with a toll. Over the past few weeks, mom’s anxiety has increased measurably. It is possible that the changes in routine and the numbers of visitors played a role. It is also possible that her disease is progressing of its own insidious volition. Dementia places the unwary on a perilous slope. The only way out is downhill.

This morning, mom awoke at 0400, brushed her teeth, and insisted that daddy told her to pack and that he is taking her back to Jersey City—of all places! She accused me of taking her towels. The towels are neatly stacked on a chair in her room for ready access. For hygiene’s sake, these are kept separate from family towels. As I have often had to do, I remind mom that the person she alluded to has been long gone. But this morning, she was angry.

Why didn’t anyone tell me my husband was dead? Why do you keep these things a secret?

But mom, dad has been gone for 18 years. You knew this.

What do you take me for? Do you think I’m stupid? Do you think I’m crazy? I am not stupid and I am not crazy.

I tried explaining her condition—even though I knew it was to no avail. I wanted only to assuage her anger. I told her I loved her and would not lie to her. She wanted to call my brother, but it was too early. Our CNA suggested calling our hospice nurse, who suggested Ativan.

My heart broke. As a veteran medical writer and editor (30+ years), I have long been averse to medication—with the exception of antibiotics when required. In fact, after mom’s brush with death and pneumonia, which resulted in a mild heart attack several years ago—completely attributable to her physician-wary sister, who dragged mom to Atlantic City while she was very ill—I have refused to give her drugs. Mom’s hospital physicians gave me the requisite bag of drugs when she left the hospital 6 years ago. I allowed them—beta-blocker included—for 2 weeks. Then I disposed of them—thoughtfully, of course. Hospice, hospitals, respite care services—all—are amazed when I tell them that mom is not on any drug. I realize this is partially a function of good genes and the absence of serious disease and debility, normal blood pressure (usually low), no cancer, healthy appetite, excellent oral hygiene… Visits to the podiatrist every 7 weeks usually wind up with discussions about venous insufficiency, but little can be done about that. We visit mom’s GP every 3 months or when an emergency requires it. She is current on vaccinations—influenza and pneumonia.

But Ativan! When T. handed me the phone to talk with our nurse, I could barely speak for crying. Thus, L. came to administer the initial quarter dose of Ativan. I felt I had sold out, but mom relaxed. She stopped talking about dad and grandma and how we didn’t tell her that they died. She stopped talking about her brother John and sisters Mary and Rose. She’s is now addressing her friend, the cat on the fan, wondering how it is he has not fallen off and remarking on the heavy rain—no rain today. Still, she is also not packing and getting ready to go home. They are no longer coming to pick her up. Mom’s breathing has returned to normal. The anxious rasp is gone. She is more relaxed, but she is gone.

Every doctor and nurse would tell me that having her relaxed is preferable to having her anxious. I have no argument with this, but the Ativan also took what was left of her memories, however unsettled, and packed them away more deeply. I am reminded of Nurse Ratched in “One Flew Over the Cuckoo’s Nest.” How far do we go? Do we grab the Ativan every time we want a minute’s peace? Or is mom given a bit of respite from unsettling thoughts, too? I don’t know.

I know only this: Mommy’s gone and daddy’s gone again.

 

No Information Works!

November 12, 2015 

Every day, we go through the litany of questions. The same ones over and over and over again. Mom will often ask where I work, if I have to work, when I have to go to work, whether Rob works, where he works, and on and on and on. So I have decided that little information will work as well as complete information.

Sandy, where do you work?

I work over there, mom.

Oh, that’s good.

When do you have to go in?

Later, mom.

Oh, good. Be careful. 

Mom wouldn’t remember what I told her no matter how often I told her. But I have found that any answer suffices. Specifics are no longer necessary. So “over there,” “here,” “later,” “today,” or “tomorrow” are as good as any answer. I think all mom wants are answers, tangential or otherwise, which suffice as an interaction or an acknowledgement.

Mom never listened for answers even when she was relatively cognitively intact. When I was in high school, I recall a woman asking why my mother asks questions yet never waits for the answer; she would instead ask yet another question. This woman’s observation served as a revelation for me. I had been so used to my mother’s ways. For the first time, I realized my mother never discussed anything with anyone. Asking questions was her way of participating in a conversation that would never become a discussion. She worked with a set of questions then that serve her even now. I later determined that she has been nearly deaf since childhood. Listening was too much of an effort then. Today, she doesn’t even bother, being locked in her own ever-shrinking world.

Where does your brother work, Rob?

No, he’s retired.

He’s a leader, isn’t he?

No, he’s 78 years…

How old are you, Rob?

I am…

Do you have the TV on, Rob?

So since mom cannot remember anything I say, I say less, but I do answer. To do otherwise would be cruel. I acknowledge her question, her presence by my words, any words. The answer never mattered anyhow. And it matters far less now.

Ten Quick Tips for Caring for Demented Elderly Patients

November 9, 2015

Of course, those who care for demented elderly patients will know there is no such thing as a quick tip. Everything you do must be tailored to the patient. But I thought I would give it a try. Sort of a chronicle of my day in caring for mom and overcoming the challenges she poses.

  1. Never feed your patient anything your dog should not eat!

My mother does not like dogs. She never has. But she is quick to use my Val.

Here, let me give him my food. He looks hungry.

No mom, Valentino has his own food.

If she says it once, she will try it an indefinite amount of times, no matter how hard you protest. The simple solution is never to leave her alone with the dog while she is eating. Allow me to raise an even more serious alarm: Never give mom anything that is poisonous to the dog. I avoid giving her dark chocolate, raisins, grapes, or chicken or turkey with bones. If I do give her a small amount of these things, I am sure never to leave her alone.

  1. Keep disinfectant on hand in every room!

This is very important. You don’t want to have to run to another room to get a wipe or a spray. Mom was wiping her placemat—I assure you it was clean—with her napkin, which she had moistened with spittle. The mats are clear plastic imprinted with pictures of animals. Occasionally some of the dye splatters in the process of making the mats. Mom unfailingly tries to remove the dye with her spittle and her napkin. The mats are actually new and replaced the last mat, which was one of a set from Pimpernel. Quite lovely. But wherever she wore down the design with her incessant rubbing, she filled it in with ink or pencil. We could no longer bear the desecration; so we pitched the mat—sigh!—and replaced it with something simpler and easier to clean.

  1. Keep napkins and tissues out of reach!

Mom is a napkin and tissue hoarder. I am led to believe that many elderly are—hoarders, that is. (Add pens and pencils and lip gloss to her hoarding habits.) Back to the paper: Wherever mom sees a napkin or tissue, she claims it. She runs through a roll of toilet paper every 2 to 3 days. You will often see her rolling the paper in her hand until she has a satisfactorily large wad to stuff into her pocket. In fact, enough with which to polish a car! Each day, we assiduously empty her bed and chairs and pockets of the napkins and tissues she collected the day before. When she stayed at a lovely assisted-living residence nearby for a few days, they presented us with an entire hamper full of tissues and napkins she had spirited away.

Keeping her stash to a minimum is important, not just a matter of aesthetics or housekeeping. The paper wads often find their way into her diaper and down the toilet. As this is an old house, my drains are not able to take a steady diet of mom’s paper goods. If your parent hoards paper goods, keep a drain cleaner and the number of Roto Rooter on hand!

  1. Keep rubber gloves on hand for rinsing soiled clothing!

Rubber gloves should be kept in addition to the surgical gloves, which are a must for all toileting and showering. I keep rubber gloves in the basement sink, where we pile her soiled clothing. I first wash everything out in the sink while wearing my heavy-duty gloves. Next step is the Lysol wash. All of her clothing goes through two washes: first in Lysol Concentrate and detergent, then in detergent to rid the clothing of the smell of the Lysol. Great product, and it isn’t destructive to the material. My water bill may be sky high, but her clothing is clean.

  1. Be sure lighting is sufficient!

I keep night lights on all over the place to be sure mom can see when she navigates her way to the toilet at night. I need not remind any readers how dangerous a fall can be for elderly patients. By the way, my electric bill is also out of sight! So it goes.

  1. Remove all area rugs!

Years ago, I wrote a primer on caring for patients with osteoporosis. Area rugs were among the objects that constituted a serious falling hazard. They are especially dangerous for people who are not steady on their feet and who are wielding walkers. Our prettiest Oriental carpets and their mats now languish in corners or the basement. But at least they are not subject to spills or other soiling.

  1. Use sippy cups!

Mom was forever spilling her drinks, as the glasses she used became too heavy for her. So now we use sippy cups. She seems to enjoy drinking from the particolored cups. And we have eliminated the danger of having her (and Valentino) walking over shattered glass. The sippy cups also serve another useful purpose. I recently poured some juice for mom in a narrow glass. I was on hand to supervise. But she protested that it was too much to drink. So I poured everything into the sippy cup. Mom drank it down without a complaint.

  1. Hide the hairbrush!

This might not be a problem with elderly men, but it is for elderly women with thinning hair who are particular about cleaning the brushes. When mom brushes her hair, she pulls the stray strands off the brush and washes them down the bathroom sink. Again: drain cleaner and Roto Rooter!

  1. Lock the doors!

This entails more than your normal door locks. Fortunately, mom is short, so I employ a chain lock high up on the doors, where she cannot reach. The door I am most concerned about is the basement door. Although she has never tried it, there is always a first time. Unfortunately, mom can open all the other doors and we cannot use combination bolts for our own safety in case of fire. But, I am a very light sleeper, which makes my nights extremely difficult. (I can hear Val padding on my bedroom carpet, let alone mom banging her walker on the way to the bathroom and then slamming the bathroom door.) But when I do sleep, I rest assured that mom cannot reach the chains. However, I am reminded of the time Ann found mom on a chair, while trying to reach candy she had hidden on top of a cabinet. Ann nearly had a heart attack. Fortunately, the chairs here are too heavy unwieldy for her to move. And the kitchen stools are curved saddle benches that cannot be used for climbing.

  1. Keep a chalkboard or a slate handy!

Mom asks the same questions over and over and over and over—ad infinitum! Continually answering her becomes an annoyance and a distraction. So to prevent going hoarse and going mad, we keep a slate nearby with the answers on it. When she starts to fugue again, we merely show her the slate. Mom will usually read the answer aloud and then say, Oh. And sometimes, she just asks the same question again, forgetting that she has read the answer. Just shake your head and slowly walk away. Maybe that’s the time to go down the basement to do another load of laundry.

 

 

Everybody’s Singing

November 6, 2015 

Sometimes mom sings at night. So at midnight one evening, I explored her purpose.

Why are you singing?

Everybody’s singing, she replied.

To that I had no answer. No quick retort, no admonition. If everyone was singing, why shouldn’t she join them!

Her singing used to bother me. Now I wonder who’s missing out on the fun. Besides, who am I to ask an elderly woman with no social outlets—or at least none that she remembers—and no personal freedom—there are times she cannot even find the bathroom without help—to stop singing.

So, sing on, mother. Sing your heart out. Surely some day I will miss hearing those Neapolitan tunes sung as only she can.