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.