What's Next? Part 16: Precious Commodities

 Mom has been living with us for over a month now.  Back on Valentine's Day, even the hospice nurses weren't certain she would survive, but she has defied the odds.  Her eyesight still isn't great, but she can see to color somewhat.  She's still having a hard time with the loss, though.  Her fine motor control is not where she wants it to be and she is sometimes frustrated.  She signs and dates her coloring projects, often putting an addendum on the bottom, "What a mess!"


The TV is on almost all day long which is a big change for me.  For Mom's sake, I'm becoming accustomed to it; however it does get on my nerves quite a bit. I am a fan of old Westerns on the retro channel, so it's not all bad. The biggest problem with the incessant TV is the repetitive commercials selling everything from replacement windows to handy-dandy kitchen gadgets.  (But WAIT!  If you call us right now, we'll DOUBLE your order!!  That's right!  We'll send you two pieces of junk for the price of ONE!  Call NOW!!) 

And when did Tom Selleck start promoting reverse mortgages?  (I still don't understand reverse mortgages, but I do like Tom Selleck, so the commercial is a little easier to take, but after seeing it a dozen times a day, ugh.)

Mom and I watch the old classic Westerns such as Bonanza, The Rifleman, Gunsmoke, to name a few.  One thing I've noticed is how many of the episodes revolve around the stars being lost/abandoned/kidnapped in the desert with very little to no water.  A bad guy shoots a hole in the hero's canteen or poisons the spring and oh, how precious water becomes as the stars trudge through the sand in the hot, hot sun.  

Growing up on the farm and having had many episodes of the farm well pump going kaput, I have always had a great appreciation for water.  It is still kinda hard for me to dump a stale glass of water down the drain; I usually try to use it to water plants or something.  The old saying, 'You never miss the water until the well runs dry' isn't  true when it comes to me; I try to never take water for granted. 

However, a precious commodity I hadn't thought much about in years is sleep.  I am guilty of having taken it for granted.   Not since my children were babies have I had so little shut eye.   I'm a night owl by nature, but alas, even owls have to sleep sometime. 

Mom's nights are fragmented; especially the first few weeks.  She   managed to sleep for about two hours and then the rest of the night was a free-for-all.  Last week was especially bad; I was up every hour and a half, running down the stairs, trying to get to her before she fell on her way to the bathroom.  

No matter how many times I tell her to stay in bed until I come to help her, she tries to sneak off on her own.  I know she thinks she's being kind to me by not being a bother, but the end result is I'm trying to sleep with one ear open at all times which after a few nights doesn't work.  Hyper-vigilance doesn't promote REM sleep; let's face it, I'm not getting any younger.  

I still marvel at adult children who take care of their elderly parents when they themselves are only twenty or so years younger.  How do they do it?  Mom was thirty-eight when I was born, so I'm quite young in comparison to my friends whose parents were only in their twenties when they were born.  I cannot imagine being in my seventies and trying to care for my ninety-six year old mother.  It is hard enough at fifty-nine.

Me, Circa 1976, age 18--no wrinkles, no gray hair

If we could only get some sleep, our new life would be so much easier.  And if we are going to engage in all-night insomnia fests, if Mom would only tell me when she needs to get up I wouldn't have to be a night watchman.

Last Wednesday I must have fallen into a deeper sleep than usual and I missed Mom getting up.  The creaking floor alerted me through the baby monitor and I was flying down the stairs as fast as I could claw the CPAP off my head.  (We should have installed a fire pole so I could simply slide down into her bedroom.)

I was so, so tired; we'd been up at least ten times that night, and I hollered, "WHY, WHY won't you just TELL me when you need to get up??!  PLEASE!??  All you have to do is SAY something and I'll answer you on the monitor and come right downstairs.  You have to WAIT for me so you don't fall down! Can you PLEASE try to remember?  At this rate you'll be burying me!!"  I begged, angry and tearful.  And tired.  

And instantly ashamed.  I've never yelled at my mother in my life.  We didn't have the typical mother/daughter relationship when I was growing up.  Since Dad was very strict, I've never thrown a temper tantrum, never stormed out of the room crying, never shouted, "I hate you!" or any other nonsensical teenage rebellion crap.  Mom and I were partners in farming and trying to stay one step ahead of the frequent insanity that characterized life with Dad.  I have seen or talked to my mother almost every day of my life which definitely has to be some sort of record.

So, imagine my shame when I found myself unreasonably angry with Mom the other morning.  It was part sleep deprivation, part self-pity, part desperation.  The nurses have cautioned both of us on the misery a broken hip would be; she might not be a candidate for surgery, so she would have to suffer seated in a wheelchair.  Nobody wants this to happen, so I have to stay vigilant at all times.  

 Mom remembers for the most part to ask me for help during the day, but at night, all bets are off. During the first few weeks of living here, at night when I tucked her in, I would say, "Ok, now.....when you need to get up to use the bathroom, what do you do?"

"I don't know," she'd say, gazing up at me.

"See this button?  All you have to do is push it," I'd say.

"Ok, now I'll remember.  I promise to be good."

"You're always good," I said, "But don't forget to push the button."

"I'll push the button," she always replied.

 The 'button' was the first way I had for her to summon me when this all started.  Dave had purchased a wireless doorbell with a receiver I can carry in my pocket while Mom has the coordinating button to push.  We'd taped the button to her bed rail and she was supposed to push it when she needed help.  Of course, she never did because she could never remember where it was or how to push the button.  We had a few close calls when she managed to climb over the rails on the hospital bed, but ironically bumped the button by mistake.

Another device I had Dave pick up for me was a bed alarm, a simple magnet on a string with a clip to attach to the patient's nightclothes.  When the patient sits up in bed or tries to exit the string would disconnect the two magnets and an extremely loud smoke alarm-ish noise will sound until someone turns off the switch.  Amazingly, the first night we used the alarm, Mom unhooked the string from her pajamas.  She was very sick at that time I was flabbergasted; how did she figure out how to unhook it?  She was so out of it when we clipped it on, I didn't think she was even aware of the alarm.  I was wrong.  

Back to the drawing board.

Enter the next phase of our Keep Mom Safe campaign, the baby monitor.  Now all Mom has to do is say something, anything, to wake me up.  Sorry to say, more than three weeks in, she has yet to say a word in the night to summon me.  Luckily, the monitor is very sensitive and picks up even the slightest rustle of the bedclothes. I have the receiver for the monitor right above my head and do my best to hear her moving around, but at some point I admit I'm not sleeping lightly enough to always hear everything.  

Or, on the other hand, I think I hear something and my heart is in my throat until I open her door and see she is asleep.  I soon grew tired of going up and down the stairs over and over again, and would turn on my cellphone and check the camera.  The only problem with using my cellphone is I had to grab my phone in the dark, turn it on, select the camera app and wait for the program to load.  Well, by that time, if Mom was up, she could have fallen.  

On Thursday night, I left my phone up and running and fell asleep with it on in bed beside me so all I had to do was grab it and check on her.  But silly me didn't have Wifi turned on and the phone was racking up minutes the entire time.  Oh, great.

One of the nurses suggested I sleep in the same bed as Mom.  True, it would probably be the safest option, but I don't think either one of us would rest very well.  I love the windows open and fresh air, and Mom needs it as warm as possible.  With my hot flashes, I'd never survive, plus my CPAP would definitely keep her awake (plus scare her to death when she'd see me in that torture mask.)

So the next incarnation of safety equipment was a motion detector.  I was at my IV appointment for Lyme disease last week Wednesday and while Joel was waiting for me, he ordered the unit which arrived on Friday.  The sensor is a bit touchy and was going off continually with false alarms which meant I was on my phone almost all night trying to figure out what was going on.  However, the motion sensor did alert me to Mom sitting up several times, so it was worth it. 

I complained to Dave about having to use my phone all the time, so last Sunday he decided to hook an old computer monitor into the security camera which enables me to have a live feed of Mom's bedroom right next to my bed.  The first night I left the display on, but it was hard to sleep with the light on.  I soon found the monitor will immediately display her room the second I hit the button, so now I can sleep a lot more soundly.  We're still having some false alarms on the motion detector, but all I need to do is glance at the monitor to know if it's time to run down the stairs or not.

I'm still using the string/magnet alarm, too. I have the alarm taped to her bed post and the string attached to her dresser; if she gets up and avoids tripping the motion detector, the noise will wake me up. 
One morning I saw her sitting up in bed and the string actually deterred her from trying to get up before I got there.  Phew.
 
After discussing Mom's sleeplessness with the hospice nurses, Mom was prescribed some meds at night and thank goodness, that has helped immensely.  Since Monday night, she's only gotten up about two to three times a night.  Carl takes her to the restroom in the morning at five a.m. for me if I haven't been downstairs recently.

Being able to sleep for three hours straight is heavenly and makes me a better caregiver.

 I'll never take sleep for granted again.  

 



 





  

What's Next? Part 15 Captive Audience

Monday morning Mom was seated in the kitchen after breakfast, sad because she couldn't color.  I turned the TV on, but since she's not able to see, she is not able to keep up with the story line.  

"I can't see, did I tell you that?" Mom asked me again.  

"I know, and I'm so sorry, Mom," I replied.  

"Do you think my eyesight will come back?"  

"I hope so."

Wracking my brain for something Mom could do despite her vision I had an idea:

 I don't know if anyone remembers the little 'Magnus Chord Organs' that were sold in the 1960's? (Here's a link to someone playing one: Magnus Chord Organ) My mother had bought me one when I was a child and we both played it every day.


Back in 1983, I wanted to surprise my mother with something special.  I purchased a very large, real wood organ with a wooden music bench from an acquaintance at work.  The organ had belonged to my co-worker's deceased grandfather and was his prized possession.  He had been sad to think no one in the family wanted the instrument and had mourned the fact repeatedly before he died.   In due time, the old gentleman passed away.  His granddaughter was thrilled when I said I'd like to buy it and for $150 it was all mine. I wasn't sure if I'd made a good deal or not; it is a tube type, not electronic, and I had my doubts about how (or if) any of the tubes could be replaced in case of burnout.  Nonetheless, I took a chance. 

We had to take the trailer into town to pick my purchase up about two weeks before Christmas.  Between the two of us, we wrestled it into the house carefully, and then wondered where in the world we could hide it.   Mom used to come visit us now and then and I wanted it to be a surprise; the only place she wouldn't go was our bedroom, right up against the foot of our waterbed, but we kept our bedroom door locked just in case.  I well remember the hassle of trying to climb around the organ to get to our closet and dress for work.  

We were both glad when Christmas Day arrived.  While Mom was at church, Carl and I loaded up the organ and drove up to Mom's.  Dad was home at the time and for once, didn't grumble about the fuss we were creating as we struggled to carry it up the steps and into their living room.  I covered the organ with a pretty sheet and put a huge red bow on the very top.   

When Mom came home from church, Carl and I were sitting in the living room, grinning like Cheshire cats.  Dad was seated in his Lazy Boy, reading the paper.   Mom knew something was up. When she removed the bow and the sheet, she stood speechless, staring.  I wasn't sure if she was happy or not at first; she was almost afraid to touch the keys.  

"You bought this for me?" she whispered incredulously.  "This is far too expensive.  I can't read music, you know that," Mom said as she continued to stare in awe.  I saw the start of tears in her eyes and found myself fighting back my own. 

"Well, are you going to stand there looking at it all day or are you going to try it out?" my father gruffly asked.  I think he was close to shedding a few tears, too.  

Carl helped her move the piano bench out and showed her how to turn on the switch.  In no time she was shyly playing, wincing whenever she made a mistake, apologizing profusely.  Carl and I left her alone in her living room and set about getting dinner ready.  Mom played for a little while but then hurriedly came in the kitchen when Dad grumbled, "Are we going to eat today?"

She played the organ many times a day for the next thirty years.  It was the best $150 I ever spent.  And the tubes never burned out, either.

When we moved Mom here last month, I was worried about her not having her organ, but there is no room in our house.  (Too much stained glass, alas.)  But I had purchased an electronic keyboard over a decade ago that had been stashed in our bedroom closet for quite some time. 

When I first put the portable keyboard on her lap last week, she began to cry.  "I never thought I could do this again," she said through her tears.  Tears come much more easily nowadays; Mom was always the stoic type, indeed I'd only seen her cry twice; once when I had the unfortunate task of telling her my brother had been killed and the second time when my dad put her beloved German Shepherd, Sparky, down.  She mourned both of those losses for months, but only allowed herself the luxury of tears once each.  

Over the years, Mom had told me crying served no good purpose.  She'd been an unhappy young bride on the farm, living upstairs in her in-law's house with no running water and no indoor plumbing.  Every ounce of water she needed to cook and wash with had to be carried up two flights of stairs and back down again to be disposed of.  

Her mother-in-law, Maggie, wasn't unkind to Mom, but she was also not inclined to be helpful either, and when my brother Bob was born, he was too noisy for the old people downstairs.  They would complain his crying kept them awake at night.  Mom took him to the barn with her in the mornings and the evenings just as she did with me thirteen years later.   As Bobby grew older, he liked to go down the steps and see Grandma and Grandpa.  Unfortunately, they soon grew tired of the rambunctious youngster and summoned my mother.  When Mom came down to get her son, her mother-in-law said, "Your place is upstairs.  I suggest you go there and keep him with you."

The only bathroom was the outhouse, so any time they needed to use the toilet, down the stairs they went and out the door in all kinds of weather.  Every time I go up to Mom's house, I think of her trudging up those worn wooden stairs day in and day out after a long day of farm work.  To think she lived above her not-too-friendly in-laws for over a decade boggles my mind.  Could I have endured it?  I think we all know the answer.  

But I remember well Mom telling me about the day when everything had gone wrong and she flung herself down on their bed and gave in to her pent up emotions.  "I cried and cried, I made a real fool of myself," she said.  "I don't know how long it lasted, but when I was done, I was ashamed of myself.  Crying didn't do anything for me except give me sore eyes.  It didn't change a thing.  I had to get up and find something to do.  Work will never let you down; when you're miserable, find something to do."  For the rest of her life, Mom vowed never to cry over spilt milk or much of anything else, either. 

But when I put the keyboard in her lap, she teared up immediately.  I wondered if I'd done the right thing; I didn't want to make her feel worse.  

"Would you please give me a tissue?" she asked, wiping her eyes.  She tentatively touched the white keys and was startled when the organ responded.  "What if I break it?" she asked.  

"You can't break it," I said, "And if for some silly reason it quits working, I can buy another one."

"Oh no!  I'll be careful!" Mom said and soon the strains of 'Oh Come All Ye Faithful' came pouring out.  

She was so happy to be playing her beloved hymns.   At least she's still able to play the organ by ear, one perk of never learning to read sheet music. 

The vision loss is the hardest thing for her to bear, and for me, too.  Mom held her finger up to me right before breakfast which is her way of summoning me for urgent help, "I need to tell you something...... I can't see," her voice trembling.

"I know you can't see," I said. 

"I think I should go to the doctor," Mom said.

"We did go to a doctor last week Thursday.  In fact, we saw two doctors," I said.  "The doctor gave you a shot in both of your eyes and we have to wait for your eye to get better,"  I sighed.

"I did?  I don't remember that.  I wonder what is wrong with my eyes, do you know?" Mom fussed.

"You had a blood vessel rupture in your right eye," I said, for the tenth time in an hour.  (I'm not trying to be sarcastic but simply stating how much this problem is on both of our minds and how hard it is to tell her repeatedly there's not much we can do about her vision but wait and, ironically, see.)

"Do I have cancer?" she asked me next.  

"No, you don't have cancer," I tell her.  She asked the new nurse who came on Monday the same question.  The nurse kindly went through her health history and diagnoses with her and reassured her she doesn't have cancer.  

"So the reason I can't see isn't because I have cancer?" Mom asked.

"No."

"Then why can't I see?" Mom asked.

The nurse went over the same information again, and Mom stared off into the distance.  The nurse said, "You are very quiet, Lucille.  Is there anything you want to ask me?"

"Yes, why can't I see?"

********************************************************

As I write this post, Mom is sitting ten feet away from me in the sunshine with my keyboard on her lap.  The range of music she knows is stunning, even if she'd snort in derision if I told her so.  I don't think she even realizes I'm sitting here, and that's ok.  She's still very camera-shy; I don't think that will ever change.

She had a good night last night and ate a hearty supper of beef stew, rye bread and chocolate chip cookie.  We're trying to settle into a routine.  Carl takes her to the bathroom at 5 AM (if I haven't been up slightly earlier with her) and she's usually up for the day around 8, at least this week.  We head for the bathroom and get dressed and then off to the breakfast table.  We eat and then I read aloud to her while we wait for 'The Price Is Right'.  While she watches her program, I go into the living room and do my walking video for an hour.  Then we reconvene and have our dinner.  

This afternoon she had no wish to try coloring any more and started to mourn her loss of vision again.  She said TV holds no interest since she can't see the screen very well, and I could tell she was miserable, so I wheeled her to the living room and put her in her Lazy Boy.  She asked to be turned to face the window and look out the window at the birds, but her voice trailed off when she remembered she cannot see the birds...



I grabbed the book we've been enjoying together and sat next to her, reading aloud.  This brings back memories to me, too, some fairly guilty ones, really.......when I was a small child, books were my saving grace.  I learned to read at a very young age and once I realized books could take me from a place of misery, I was addicted.  I could be anywhere in the world and still be in the present when I was needed.  

When I was very young, around six or so, my brother was still living at home; he left home at nineteen when he joined the army during the Viet Nam war.   He hated my reading habit, too.  Especially when Dad was at the tavern and it was just the three of us in the barn at night.  Spoiled little me would ensconce myself on my little milk stool and sit in the alley right next to Mom who would be stripping out a cow after the milker was taken off.  While she pulled patiently on the cow's teats, I would be reading to her from some old school books my father's old maid schoolteacher sister had left behind.  The books were tattered and in terrible shape from being in the barn, but that didn't matter.  They had old stories in them about Icarus (in my naivete', I pronounced it 'I-car-us') flying too close to the sun and his father scolding him.  Then there was one about Rip Van Winkle falling asleep in the woods and waking up years later.......and all of these old stories I would try to read aloud to Mom while she worked.  

My brother would always yell at me, "Go somewhere else!  We're trying to get some work done here!"  I knew Bob was jealous because he wanted to talk to Mom and I was taking up all of her time.  I would stick my tongue out at my teenage brother and then he'd push me off my stool. 

I'd cry and whine and Mom would be ready to pull her hair out.  "Karen, why don't you go read to the cows?" she'd ask.  I'd wipe my eyes, take my stool and my book and try to read to the cows up in front, but the light was too poor.  

Dad also greatly disliked my habit, "She's always got her nose buried in a book," he'd grouse.  Though I didn't like to displease him, I never did give up reading, I'd take a clean bread bag and put a big, thick, library book in it and take it with me on the tractor.  I'd read the book while I was waiting for Dad to get a load of oats when my only job was to drive down to where he was parked and bring the empty wagon.  The old combine was always cantankerous and sometimes an hour would elapse before he'd need me.  The book would keep me company while I sat and swatted horse flies in the hot sun.  

I looked forward to every Friday in the summertime; Mom would go to the grocery store and drop me off at the public library and I'd come out with five, six, sometimes seven books in my arms.  Though I didn't own the books, I felt so rich having them in my lap on the way home.  I'd pick each one up to admire; they were very precious to me.

So now, over fifty years later, we've come full circle again; Mom is a captive audience to my reading aloud.   

 My fervent hope is she's enjoying it this time around.  

I know I am.

What's Next? Part 14 Things Can Get Complicated

Sunday night went fairly well.  At least I figured out how to get the kinks out of the baby monitor system.  I didn't sleep very well, though.  Carl was restless last night; he usually sleeps on his side, but around 2 AM he'd rolled over onto his back and started to snore.  I hated to nudge him to roll over again, but I couldn't hear the baby monitor over his rasping.  Once I had Carl back on his side again, the baby monitor picked up Mom's slight snoring.  The noise was reassuring; at least I knew she was asleep, but whenever she'd have a slight break in her breathing rhythm, I was wide awake.  

At some point I must have dozed off.  Around 4AM, Mom began to stir and this time I was right on point.  I managed to unclasp my sleep apnea mask and grab the baby monitor all in one fell swoop instead of fumbling around like I usually do.  Waking up with a clear head and fantastic coordination is not my strong suit, but I'm getting better at it. 

Reaching for my cellphone on the nightstand, I quickly pulled up the camera app and could see Mom was sitting up in bed with her legs dangling off the side of the bed.

"Do you need to go to the bathroom?" I asked, speaking through the baby monitor.

Mom jumped a little, peering myopically into the dark room, "Yes....where are you?" 

"Just wait, I'll be right there," I promised as I located my spectacles and thundered down the stairs.

"What time is it?" Mom asked, peering with no luck at her clock radio.

"It's 4AM," I said.

"Were you asleep?" 

"Yes."

"Well, how do you know I'm awake if you're asleep upstairs?"

"I'm a light sleeper," I said as I helped her walk to the bathroom.  

"You must be," Mom said.  "I wonder if you ever sleep at all."

Looking into the mirror this morning, I'm starting to wonder the same thing.  The bags under my eyes are starting to accumulate luggage of their own.

Mom sadly is still having issues with her bowels; no movement since last week Wednesday.  I was supposed to go out to eat with two of my dear friends from high school at noon today, but the logistics of getting people here to watch Mom for me was a bit too much of a circus.  Plus, if she needs to use the bathroom, I can't expect a volunteer to take that on.  My friends understand; and if nothing else, if they are still visiting at one of their homes by 3:30, I could drop in for a short visit when Carl gets home from work.

I will admit, people tried to make my little outing work for me, though.  Ann was going to come at 11 AM and stay until 1:30.  Then my friend Gloria was going to stay with Mom from 1:30 until 2:30 when (I think) a volunteer from hospice was coming, though I haven't had a confirmation as of yet.  The volunteer was supposedly going to stay from 2:30 until Carl arrived home from work at 3:30.  That was the plan, but wow, that's a lot of people to coordinate and have their days interrupted, too.  Talk about complications; and all for a few hours away from home when I'd probably only sit and watch my phone to see how things are going with Mom anyway.

I know I sound like a martyr, and yes, some days I truly am one of the Best Martyrs around.  At times, self-pity abounds and I'm not proud of it.  Though I know it is not the case, other people's lives are seemingly going on just the same as ever, but mine is upside down.  I told David I'd never realized how much I went outside before; how easy it was to pick up and go; and how wonderful it was to sleep without one ear open. 

 I'm ashamed I never realized what caregivers go through; the isolation, loneliness, and despair, especially in the early hours of the morning when everything seems worse.  The night hours crawl along, and I hate to even try to go back to sleep for fear I'll have to wake up right away.  Thank goodness for the weekends when Carl is home and I can at least catch a few hours of solid sleep when he's up for the day with Mom.

The guilt I feel for being resentful at times spins me around and puts me in my place; Mom is easy to please and I don't have it that bad.   If I were in her place, I would not want my daughter acting like a spoiled brat.  She's coping with the loss of her health, her home, her eyesight, and ultimately, her life.  Talk about having her life turned upside down!  And yet, is she complaining?  No.  

I do long for the time I hear Carl's loud muffler driving in at 3:30 every day, though.  When he arrives, I usually go out for a long walk in the fresh air, trying to shake off the lethargy of sitting, sitting, sitting.  Another admission of guilt: I was a petulant sock puppet about him leaving for his weekly slot-car racing engagements a few weeks ago.  Every Tuesday, Carl and Joel meet at varying homes to race slot cars with a group of people.  The meets start at 5 PM and, depending on the distance of the drive, Carl usually doesn't get home until well after 8-8:30 PM.  

Carl comes home all cheery, heading for the shower so he can leave at 4:30 PM for the drive back to Green Bay.  I was in a dark place and felt very sorry for myself.  Mom was napping at the moment, and I felt this unreasonable rage tinged with green-eyed envy welling up inside me.  

Perplexed, Carl halted on his way out the door, "Is there something wrong?"

"No, not a thing," I sarcastically hissed.  "Not a damn thing is wrong.  Just run along and have fun.  You know where we'll be when you get back."

"Wait a minute, I asked you if my leaving on Tuesday's was a problem and you said it was ok.  Now I'm leaving and you're mad.  You're sending me mixed messages.  Do you want me to stay home?" Carl asked.

"No, I don't want you to stay home," I said, treacherous tears falling.  "I don't want to be this way, but I admit, I'm feeling abandoned."

This all stems back to my childhood; my father loved to go to the tavern, usually six days a week (never on Sunday!) and was the same way when he left; cheerful.  After our noon meal, he'd wash up, change into clean bib overalls and shave every day, humming while he scraped the whiskers off his face in the kitchen sink.  He never hummed unless he was on his way out the door, away from the farm, away from us.  Satisfied with his looks, he'd go to the refrigerator and grab a pack of Camel cigarettes and a book of matches, check his wallet for money and, finally, turn to my mother and I and demand a kiss on his merry way out the door.  We were to wish him well, good fellow......carry on........we'll be here when you get back, milking the cows in your absence, chopping hay for them, shoveling manure.  Rest assured, your work will be done while you're gone.  The two inept, bumbling females will muddle through somehow, and when you come stumbling in around 8 PM and ask whether the cows were really milked and why weren't we out of the barn yet?  All the neighbors are done milking their cows, and here his barn lights were all on yet; people would know we were still in the barn!  Why couldn't we get an earlier start and not make him look bad?    

Never mind that Mom had been up since before 5 AM, pitching silage and carrying five gallons pails of hot water out of the basement before dawn year after year; milking cows with just a kid and that I still had oodles of homework to do before I could go to bed; no, none of that mattered.  We made him look bad.  Such killjoys.  Maybe now he won't talk to us for a week or two, that will teach us to get an earlier start.

All of these unreasonable thoughts went through my head while Carl was standing, dismayed, with his hand on the doorknob, still holding his slot-car case.  I could tell he was torn about going and I felt like the biggest jerk in the world.  He is not my father; he did not and does not abandon me with a man's work while he goes drinking; he only wants to have one night a week for a few hours, and I'm begrudging him.  

I told him to go, please, just go.  I'm sorry for my childish behavior.

He did go, and I was very ashamed.  Luckily, Mom was asleep, so she didn't witness my breakdown.  I don't want her to feel like she's a burden; she's all-too worried about that as it is.  She's not a burden, my God, how I will miss her when this is all over.   But I'm a frail, selfish woman.

One thing I've noticed is how people all see my life from a different angle.  I've been really surprised by some of the responses from my friends as this journey has unfolded.  Some people have understood my desire to have Mom here for as long as I can manage; others have been almost, dare I say it? outraged by what they see as denial on my part, in fact, friends who I've known have taken care of family members in the past are the most adamant that I have to throw in the towel sooner than later.  Some people have praised me for my 'selfless devotion' (ha, if they only knew my bouts of self-pity!) and others have almost condemned me, 'you are not a professional, how do you know you're taking adequate care of her?' 

Maybe they are speaking from a place of experience, from a place of exhaustion that I haven't reached yet?  I don't know, but I will admit the story of the boy, the old man and the donkey has never meant more to me than it does right now.

If you're not familiar with the tale, here goes (copied from the internet:
 A MAN and his son were once going with their Donkey to market. As they were walking along by its side a countryman passed them and said: “You fools, what is a Donkey for but to ride upon?”

So the Man put the Boy on the Donkey and they went on their way. But soon they passed a group of men, one of whom said: “See that lazy youngster, he lets his father walk while he rides.”
So the Man ordered his Boy to get off, and got on himself. But they hadn’t gone far when they passed two women, one of whom said to the other: “Shame on that lazy lout to let his poor little son trudge along.”
Well, the Man didn’t know what to do, but at last he took his Boy up before him on the Donkey. By this time they had come to the town, and the passers-by began to jeer and point at them. The Man stopped and asked what they were scoffing at. The men said: “Aren’t you ashamed of yourself for overloading that poor Donkey of yours—you and your hulking son?”
The Man and Boy got off and tried to think what to do. They thought and they thought, till at last they cut down a pole, tied the Donkey’s feet to it, and raised the pole and the Donkey to their shoulders. They went along amid the laughter of all who met them till they came to Market Bridge, when the Donkey, getting one of his feet loose, kicked out and caused the Boy to drop his end of the pole. In the struggle the Donkey fell over the bridge, and his fore-feet being tied together he was drowned.
“That will teach you,” said an old man who had followed them:          “PLEASE ALL, AND YOU WILL PLEASE NONE.”

(In another incarnation of the story, the moral was:  "If you try to please everyone, you will lose your ass.")

People have told me several times in my life, "God will never give you more than you can handle."  

Hmmmm.....I don't know if I believe it.  I do believe I am learning an important lesson here, even if I don't love every aspect of the experience.   I'm learning to appreciate the good times, even if they're only tiny moments of joy.  These are the things I've ignored all too often in my life.  The way the snow glistens like diamonds scattered in my path as I ski along in the wintertime.  The tiny chickadees who land on the trumpet vine with their impossibly frail-looking legs and chirp at me as I refill the bird feeder. 

This morning, after her tiny breakfast, I picked up an old book and started reading aloud to Mom.  Her eyesight won't allow her to read any longer which is such a shame.  After the first chapter, I glanced over; Mom's eyes were shut and she was slouched to one side in her wheel chair.  I stopped reading and her eyes opened immediately.

"I'm sorry, is this book boring?" I asked.

"NO! I'm loving it, I can picture everything as you read, please, don't stop."

I had a bit of a hard time choking back the tears that formed; if a little thing like me reading aloud to her makes her happy, how sweet.  She is so appreciative of each and everything I do, thanking me constantly for every attention, no matter how small.

She is teaching me a final lesson as my mother, the gift of selfless love.

 

What Next? Part 13

My birthday gifts: the lovely potted plants from Ann, chocolate bars from Joel and Abby, and a chocolate orange from David.

Another weekend has come to a close. The highlight of Mom's weekend (and mine) was seeing Audrey on Friday night for my birthday get together.  

Audrey about a month ago

How fast she's growing!

 (I have some pictures of Audrey and Great Grandma together, but my phone is not cooperating.)

Carl and Mom looking at interesting things on the interwebs

  Mom had a so-so day today, but she's still suffering from the loss of her clear sight.  She can see shapes and colors, but the adult coloring book is too much for her to cope with. 

She's worried about messing up Dave's coloring book despite all of us assuring her he wasn't going to be upset.  "I want you to have fun," Dave told her on Friday night.  "You can't mess it up."

"No, I won't take the chance," Mom said.  "The book is too pretty to have me scribbling in it."

"Oh, don't worry about it," Dave said, "You're doing a good job."
 

David modeling some goofy shades we found upstairs.

Mom didn't believe him.  And no amount of cajoling on my part will convince her to continue, either.  Carl came up with a temporary solution and printed off some nice stained glass patterns we had here.  Mom was willing to work on the designs once she saw they weren't affiliated with a purchased book.

Mom looking at David's 'Fancy Glasses'

 Carl was explaining chess pieces to Mom on Friday night; I'm not sure why, but she was seemingly interested.  We all try our best to keep her spirits up and if having the intricacies of chess pointed out takes her mind off her vision issues and living situation, all the better.  


On Saturday afternoon, Dave came home and helped Carl tar down the shingles which were blown off our roof by last week's high winds.  Last week Wednesday and Thursday we were under a wind advisory; 30-50 mph sustained winds were blowing non-stop for the two days.  Sleeping upstairs so close to the roof, it sounded as if Santa Claus and the reindeer were back for a return visit in March.  The shingles were flapping in the gale and eventually broke off.  We were lucky to find all fifteen of them lying in the flower beds.
Like it or not, we're going to have to put a new roof on the house this summer.

While Carl was tarring down shingles and Mom was having a short nap, Dave and I started burning down the ornamental grasses that weren't too close to anything to cause harm.   'Karl Foerster' and miscanthus grasses burn incredibly hot and fast, and it sure beats having to cut them back by hand.  You have to exercise caution with them, though, as Dave and I discovered too late.  Dave's pants caught fire and he had a big blister on his hand from swatting it out. Luckily he remembered to stop, drop and roll.  

Fire in the Quarry

On Sunday, Carl and I set Grandma up with my organ and when she was happily playing, we went outside to discuss our garden situation.

Thank goodness I had Mom's hearing corrected; at least she can enjoy playing the organ even if she cannot see very well.  She plays by ear and does not read sheet music.

The snow has all melted again for the second time this winter (though it's snowing tonight) and we were able to walk around in the yard where the Riverbed used to be before the new septic tank was put in.  The yard is frozen dirt (or mud when the temperature comes up) right now; it's really a mess.

We've been discussing building a seasonal out house for the garden and all of the visitors who come for tours/parties.  I had the brilliant idea of moving the gazebo to the west side of our house and walling off half of it for restroom use.  The other half could simply stay gazebo-ish.  We went outside armed with rulers and soon discovered the area I hoped to cram the gazebo into was not large enough.  

Back to the drawing board on this project; time will tell what we come up with.

Well, Mom has settled in for the night, so I guess I'd better do the same.  She told me she can see a little better tonight and folded towels from the laundry basket to help me.  I hope her eyesight continues to improve; we'll see what tomorrow brings.

What's Next? Part 12: Another Setback

It is now one in the afternoon on Saturday.  Mom had a rough night and is dozing in her chair.  When she wakes up, she's confused as to what day it is.  I dislike giving her morphine or the lorazepam since the two drugs confuse her so much, but being in pain is unacceptable.  

Early February

I was up with her three times last night and finally let my guard down when Carl was up for the day at eight a.m.  I knew he would alert me to anything he couldn't handle.  I slept soundly from eight until nearly ten a.m. which felt great until I realized I'd just overslept a meeting with Mom's tax accountant.  Ugh.  I called the tax office and was able to reschedule an eleven a.m. appointment instead.  Phew.   

Our bedroom is now upstairs; yes, I was able to convince Carl to make the move after all.  Last week Saturday Ann came to help us with the monumental move right away in the morning.  Joel and Dave had been here several times a week, taking their belongings and helping to figure out what we needed to keep and what we can part with in the bedrooms upstairs.  

Our farm's cross-country skiing scenery

Carl started working on draining the year-old waterbed mattress right after breakfast.  I was dealing with Mom's needs and trying to get a meal on the table while helping out (or hovering) wherever I was needed.  

We have had a waterbed since 1979; just the simple 'bag' type mattress filled with water.  The first mattress lasted for over twenty years before it sprang a small leak.  There was no disastrous flood as most people would assume; I simply noticed the bedding was wet when I made up the bed one morning.  We replaced the mattress with yet another simple bag mattress and all was well until 2015 when the waterbed heater failed.  Having a heater last over thirty years has to be some sort of record.  We knew we'd been lucky.  Carl decided he wanted to upgrade to a mattress with a baffle, which is basically a piece of foam inside of the bag, and we ordered both a new heater and mattress at the same time.    

Draining the old mattresses had never been a problem in the past; we simply hooked up a hose and the water siphoned out.  The new mattress with the baffle was being much more difficult and one of us had to hold the hose in place or we'd lose the suction for siphoning.  

  As the mattress was nearing being empty, Ann, Carl and I tried to squish as much water as possible to the surface of the baffle and we all had a good laugh at the crazy positions we found ourselves in.  Mom, seated in her wheelchair coloring at the kitchen table, thought we were a bunch of crazy people.  After a few more tries at siphoning, we were finally ready to try to hoist the still heavy mattress out of the waterbed frame.

Mom, coloring in the kitchen

Carl retrieved a long piece of denim fabric from my sewing stash in the basement and we carefully hoisted the mattress up and over the wooden frame, finally resting it in the middle of the denim.  We were ready to haul the mattress up the stairs but found it to be heavier than we anticipated.  Luckily at that moment, Joel, Abby, and Audrey came to help.  With Carl and Ann on one end and Joel and I on the other, we made it up the steps slowly but surely.  Joel and Carl ended up taking the lion's share of the burden.  I estimate the mattress probably still weighed over two hundred pounds.

David arrived right afterward and the rest of the day was spent taking down Joel's old bed and stashing it into David's old room and then taking the waterbed frame apart and hauling it upstairs.  The headboard of our bed has two stained glass windows and I had a lot of knickknacks stored on the shelves.  Ann and I took one of Joel's big totes and packed away all of the memorabilia.  I need a curio cabinet (or, ok, less junk) but there's no room in the house for one.  For now, the tote will hold things until we get this all figured out.  

The men worked on reassembling the bed while Abby and Audrey visited with Mom.  I ran around in circles, upstairs and downstairs, trying to get something done and also stay out of the way.  Ann was vacuuming and dusting; all manner of work was being done.  Carl finally had the waterbed refilled by about five pm.  Of course, we drained the hot water heater, so the first night was a bit chilly.   

Carl and I took a few minutes trying to figure out where the bed should go.  We have a story and a half house, so the ceilings upstairs slope on one side quite a bit.  The headboard on our bed is quite tall, but we found it would just fit under the sloped ceiling.  However, for the last thirty-eight years we've slept with our heads facing north; now we're facing the opposite direction.  (I'm still amazed at how well Mom has adjusted to living here with us when I'm still feeling odd in a new bedroom in our own house.)
 

Mom in the living room reading a Get Well card.  This was before we moved her into our room.

It's now 9:44PM and Mom is sitting in her Lazy Boy watching the movie, 'The Sons of Katie Elder'.   

After we had our bedroom cleared out, we were able to take the hospital bed apart in the living room and reassemble it in Mom's new room.  Mom's dresser and her other belongings all fit quite well in there, too.  

Ann had a prior engagement for later on in the day, and in due time Joel, Abby, Audrey and finally, David, left for home, too.  Carl and I kept cleaning and rearranging things until we were all ready for bed.  I have to admit, it was very nice to have our living room back to normal; now we can even roll the wheelchair through with ease.  When you live in a small house, floor space is at a premium. 

One mistake I made early on was to buy an oscillating air mattress, the kind that is supposed to prevent bed sores from forming.  I don't know if it's because Mom weighs so little or what, but the first night I'd put the mattress pad on her bed, she was miserable.  She said it was like sleeping on tennis balls and vowed not to sleep in the hospital bed again.  She woke me up that night to use the restroom at 4AM and wanted to sit in her Lazy Boy instead of going back to the bed, so I laid down in it to see what the problem was.  I admit the mattress pad was firm, but the pressure did alternate slowly and I didn't find it to be horribly uncomfortable.  I'm surmising her light weight is the problem.  I removed the mattress pad the next night, but Mom still insisted she couldn't sleep in the bed.

When Joel came home on Tuesday I enlisted his help in taking the hospital bed apart and bringing his old bed down for Mom to sleep in.  Right now she doesn't need the hospital bed, and I just want to make her happy.  We can always bring the hospital bed back down again if it becomes necessary.

Hospice has been a godsend; the nurses usually come twice a week, Mondays and Fridays, and a CNA (certified nursing assistant) comes on Wednesdays for bath care.  I know if I need help, all I have to do is call.  

Knowing hospice has my back has taken a lot of the stress off of caregiving.   Not that there hasn't been stress; there's been plenty.  Two weeks ago, Mom hadn't had a bowel movement for ten days and something needed to be done.  Hospice provided me with laxatives and I was giving her a dose every day, but still nothing happened.  Finally, on the tenth day, the CNA brought out a suppository.  About a half hour later, Mom was in great discomfort in the bathroom.  An hour later, I called hospice and told them what was going on.  

"The suppository may take up to twelve hours to take effect," the nurse on the phone said.  "Try to encourage her to take deep breaths in through the nose, out through the mouth and maybe a hot water bottle to ease her discomfort."

"The suppository has taken effect already," I said.  "She can't pass anything and she's in a lot of pain.  She can't take this for another twelve hours."

"All right, we'll send a nurse out."

"Hang on, Mom, the nurse is on her way out to see us," I said as I held her hands.

Time seemed to drag as we waited for help; I stepped out of the bathroom for a minute and when I came back I had to stop Mom from trying to remove the stool by hand.  She was desperate and in so much pain.  She wanted to stand up and then she wanted to sit down and finally to lie down in her bed but kept changing positions constantly. 

Finally the nurse arrived and took charge.  She donned a series of rubber gloves and with me holding Mom upright, proceeded to break up the softball-sized mass.  Poor Mom, it was awful.  I felt as if I was helping to deliver a baby.  The ordeal was horribly painful for Mom; all three of us were exhausted by the time it was over.  Blessedly, Mom doesn't remember the event at all.

For days afterward, sitting in the wheelchair was pure torture for Mom.  I try to alternate her sitting with some walking; she's still able to walk very well but her balance is off so I need to be there at all times.  She does walk behind her wheelchair in the afternoon for the exercise.  Mom's not used to being sedentary which makes prolonged sitting unbearable.  Hospice brought us out a gel pad to sit on which helped some, but nothing is the same as being able to walk when you want to.

Since the constipation event, I was giving Mom a stool softener every day.  As is to be expected, that plan backfired in a big, messy way.  And sadly, Mom was trying to get to the bathroom on her own and didn't call me, so the result was a disaster.  Thankfully we wanted to put new carpeting in our bedroom anyway, yet another win-win situation for moving the waterbed out of the room.  

Assessing the situation, I felt the easiest solution would be to strip Mom out of the soiled clothes and help her into the shower.  One of the things I'd dreaded the most about caretaking was how I would face having to bathe and/or diaper my own mother.  We've been very close all of our lives, but this is moving into territory neither of us has ever been in.  For years Mom had said, "If I ever get to the point where you have to change my diapers, promise me you'll put me in a home!"  I hate to admit it, but I wasn't looking forward to the prospect, either.  Hospice assured me they would provide bath care, but oh well, I wasn't about to have Mom wait for hours in that condition.  We sallied forth to the shower.

Mom can still manage to step over the side of the bathtub with me assisting and sit on the bath chair.  She's able to use a washcloth, too.  I washed and conditioned her hair.  This was the first time she'd ever had a shower in her life.  She was a bit shocked by the process, but then said it felt so good to be clean afterward.  I blow dried and curled her hair and we were ready to face the day.

Things were going along fairly well this week; Mom is content to color in her adult coloring book in the morning and have her tiny breakfast portions.  At ten o'clock, 'The Price is Right' comes on and she loves to watch her show.  I would take the opportunity to go into the now restored space in the living room and do a walking video for exercise.  With all the stress, my love for sugar has once again gotten the upper hand.  If I don't get some exercise and soon, I'll quickly regain all the weight I lost over the last four years.  

On Wednesday afternoon, my friend Terry stopped in to visit with Mom after work and brought with her a full crockpot of beef stew.  Oh, that was delicious!  Carl was home from work and I had taken the opportunity to go down in the basement with the wringer washer to do the laundry.  I can't tell you how humbled I am by the care our friends and neighbors have bestowed on us.  It is truly amazing.   

I was feeling pretty good about our situation mid-week; we'd settled into a good, workable routine.  But then tragedy struck again.  A different nurse from hospice called and asked if she could come for a visit.  'The Price is Right' was on TV and Mom was watching it when she arrived.  The nurse sat down next to Mom and asked her how she was doing.  Mom reached out into the air and said, "What is this hanging down?  I can't see your face."

The nurse asked her what was wrong, Mom said, "I can't see anything out of my right eye, it's all black."

Oh, no.  

The nurse called Mom's family doctor's office; the GP was out for the day, but we could get an appointment with the nurse practitioner in an hour.  I was getting Mom ready to go when the doctor's office called back and said a better option would be to go to the emergency room.  I looked at the hospice nurse and said, "No disrespect, but the ER is only going to tell us to go back home."

The hospice nurse agreed and then put a call into Mom's eye specialist.  She somehow managed to get us an appointment at 1PM and wishing us luck, left so we could get ready.  

I quickly changed my clothes, tried to figure out how to fold the wheelchair up and cram it into the Pontiac while Mom sat with her head in her hands, looking miserable. 

We arrived at the optometrist's office and a series of tests were run after Mom's eyes were dilated.  The doctor said he suspected a detached retina and we were then sent across town to a retina specialist.  I had an IV appointment scheduled for 4PM which I'd canceled, but Joel was going to come home early from work to sit with Mom while I went in, so I hoped he'd be available.  I called him and he came right over and chauffeured us to the retina clinic.

After waiting an hour or so and wading through paperwork, Mom was finally seen.  A blood vessel had burst in her right eye forming a blood clot that blocked her vision.  The only thing he could do was give her a shot of Avastin in both eyes in the hopes of clearing up the clot in the right and preventing one from forming in the left.  Mom was in favor of this; she wants to see to do her beloved painting.

The shots were administered and we were back on our way home arriving at 6PM.  Mom's eyes were terribly irritated and she couldn't see a thing; it was awful.  She began to cry when she thought about not being able to even paint anymore.  This problem had never occured to me in all of my prior worrying; indeed, 'What Next?'

Friday was my 59th birthday and Mom was in misery.  She couldn't keep her eyes open due to the pain and there was nothing left for her to do but sit.  Plus, constipation has once again set in since the nurses said to go down to dosing her with the stool softener every other day which probably will have to change again, because this is worse than the alternative.  Carl took our taxes into the tax office after work and then stopped at Wal-Mart for the baby monitor.  He called me from the store and asked what kind of an ice cream cake I wanted for my birthday.  

"That's a wonderful idea, and I thank you for thinking of it, but please don't buy one.  I'll only eat it and I don't need the calories," I sighed.  "Thank you for the gesture, it's very sweet, though."

Carl came home an hour later with a bouquet of white and pink carnations, my favorite. This was the second time in my life I've received flowers, I'm getting quite spoiled, I must say.

I spent the afternoon helping Mom to and from the bathroom in the hopes she have some relief, but no such luck.  Finally she wanted to lie down on the couch in the living room for a nap.  I asked Carl if he'd mind if I went for a walk.  

"As long as you're back by 6PM," Carl said. "I know you don't like surprises, but I invited David and Joel's family over for supper to celebrate your birthday."

I was standing with one hand on the doorknob, my car keys in my hand; my plan was to drive to Seymour and walk down the walking trail. 

Seeing me eyeing up the house with dismay, he said, "Don't worry about it, the boys are bringing pizzas, just go and have fun."

So I did.  I called my friend Brenda and she kindly talked to me as I walked four miles into the setting sun and back.  The temperature was a brisk sixteen degrees, but it felt so good to walk and talk.  

When I arrived home, having our little family get together was very nice; it was so wonderful to see Mom and little Audrey together; Mom just lights up whenever she sees her, though sadly, she can only see shadows right now. 


It is now 11:23 PM and I'm waiting for Mom to fall asleep.  My biggest problem with caretaking is the nighttime.  Carl bought the baby monitor on Friday and we used it for the first time that night.  It worked like a charm the first three times, at midnight, 3 and 5 AM, but as I said earlier when Carl was up for the day, I must have fallen into a sound sleep and didn't hear her rustling around.  She knows all she has to do is talk now to get my help; there are no buttons to push, but Carl said he was shocked to hear her bedroom door opening this morning and had to rush to get to her before she teetered over.   I don't know what to do about her unwillingness to summon help.  She says she feels bad because she doesn't want to wake us, and I understand her concern, but tonight I'm going to turn the sensitivity up to high on the baby monitor.  With any luck, I'll hear her before she has time to get out of bed.  The monitor is great; I can talk to her from my bedroom and tell her I'm on the way.  Now if I can only get her to talk to me.

The clock just struck midnight and Mom has settled down.  I am going to head for bed again.  I pray her eyesight will be better in the morning.

Thank you to all my dear friends, near and far, who have helped me in so, so many ways.  I am blessed.