Thursday, February 23, 2017

What's Next? Part 10: Adventures in Caregiving

The weather in our area has been as strange as my life lately; yesterday we hit an all-time record high of sixty-something degrees in February.  The only snow still lingering is in the ditches in the shadow of the woods.  We all know winter isn't over yet; the forecast is calling for snow tomorrow.

The black blobs on the lawn are the Girls, scavenging for whatever they can find on the greening lawn.  

Anyway, back to my saga.  

After the hospice furniture and accoutrements were delivered, and everyone left, Carl, Grandma and I sat in stunned silence.  Reality was settling in.  To their credit, hospice personnel did set the bed up in Mom's bedroom, but it is difficult to take it all in.
Joel showing Grandma pictures of her great-grandchild, Audrey

Trying to follow in my mother's practical footsteps, I pushed myself out of the kitchen chair and went in search of the vacuum cleaner.  Mom always said when times are tough and you're sad, look for something to do and get on with your life.  With all of the mud outside, the house needed cleaning.  Carl sat with Mom so he could help her when she needed it.  My tired mind was racing as I went around the house vacuuming.  How is this going to work? 

Darkness was falling fast and I remembered the Girls would need to be locked up for the night.  I asked Carl if he could stay with Mom and I set off back down the road to our house on foot.  The cold air was heavenly welcome after the blast furnace Mom's house always is.  The thermostat is set to 70, but when the oil furnace runs, the heat soars to unbelievable heights before it shuts down, causing menopausal me to almost swoon.  

I was about halfway home when a car came from the east.  David pulled up next to me and popped open the passenger door. 

"Where are you headed?" he asked.

"Home to the chickens," I said.

Dave put his car in reverse and we sped backward down the road.  Both of my sons have an amazing talent when it comes to driving in reverse.  Dave went along with me to lock up the chickens.  We went in my house and gathered up some more things I'd need for the move to Mom's.

As we were coming out of the house, a van pulled in the driveway.  It was my dear friend Brenda.  

"Did you eat yet?"  She had brought homemade chicken dumpling soup, a fresh loaf of bread and a delicious 'Kringle' from a specialty bakery.  The kindness of my friends never ceases to amaze me.

All three of us went back up to Mom's house.  Brenda warmed up her delicious soup and helped me with more of the cleaning while Dave and I set to packing up the sunflower seed bags in the hallway and tidying up in the entryway. 

After we were done with those chores, David took stock of the placement of the bedroom furniture and the hospital bed and came up with a better plan to make it more workable.  He and Carl took the dresser and cedar chest out of the bedroom and into the living room.  Brenda did some more vacuuming,  and I was dusting while Mom sat in her new transport chair weakly observing.  

We put the hospital bed up against the west wall of the bedroom leaving about two feet of space between the two beds.  David set up my CPAP machine for me and after about an hour, we were ready to eat.  It felt SO good to eat a good home-cooked meal; we'd been eating poorly for too many days.

Brenda sat with us and visited with us and then cleaned up her generous meal.  David took Mom's laundry home with him and promised he'd have it back the next day.  (Remember, silly me only owns a wringer washer and no dryer.)

After Brenda and Dave left, I got Mom ready for bed.  Mom's bathroom is tiny and even the smaller transport chair barely fit through the door.  I had to stop at the doorway and then painstakingly assist Mom's tiny, halting steps to the toilet.  

I was supposed to give Mom a smaller dose of morphine before bedtime to ward off any pain.  The drug takes effect amazingly quick; before David left, Mom was alarmed by what she thought were seven fingers on his hand.  She asked him why he had so many fingers.

"Do I?  How many fingers do I have?" Dave asked.  "Let's see, one, two, three, four, five, hmmmmmm......I guess I have five."

"Oh, ok, I thought I saw seven.  Now let me get this straight; it's Carl first and then you and then Jack, Queen, King.......right?" Mom tapered off.

Before I could seat her on the toilet, I had to figure out how to get her slacks, long underwear and and underwear down while still holding her up.  She was so wobbly, it was scary.  Sadly, I thought we had everything removed, but we missed her underwear which necessitated an underwear change.  (I'm getting better at it now, we've only had that happen three more times since.)

"I never thought it would come to this," Mom said in a slurred voice.  "You, having to undress me like a kid.  This is awful. I'm so sorry."

"Oh, don't worry about it," I said.  "You did the same for me when I was little."

Mom sighed heavily as she sat glumly on the toilet.  Suddenly she looked at her hands and then at mine.

"Why do I have four hands?  I don't understand.  This makes no sense.  I've never had four hands before."  She started clenching and unclenching her fists.

"Why don't my hands work?  I can't close the other ones."

I realized it was the morphine taking effect and opened and closed my hands at the same rate. 

"Oh good, now they're working."

I remembered her dentures at the last minute and she was able to tell me what I had to do to care for her teeth.  I put her back in the chair and wheeled her to the bedroom door.  Once again we couldn't enter the room with the chair, so she had to walk around her old bed to get to her hospital bed.

With Carl on one side and me on the other, we had her safely installed in her new bed.  I tucked her in and gave her a kiss goodnight.  

"Good night, Mother," Mom said to me.  "This is something else, you have another kid to raise."

"Oh, c'mon now, we'll get through this," I said, lying through my teeth.  I had no idea how we'd get through this.  I was so tired.

After she drifted off to a restless sleep, Carl and I decided it was time to go to bed.  Carl was worried about my overtired, overwrought state and promised he would be sleep with one ear open so I could put my mind to rest.  It had been three days with less than an hour of fitful rest at a time.  I was looking forward to shutting down.   I put my ear plugs in, strapped on the infernal CPAP mask and fell into a restless sleep of my own.

But no matter how tired I was, sleep was elusive.  For one thing, I was on the wrong side of the bed.  We've been married for 38 years and I've always slept on the left side of the bed, but because Carl needed to be closer to Mom to hear her, he was sleeping on the left side.  Mom's bed is a small full-size where our waterbed at home is a queen.  Carl is a bed hog (no offense to him, just telling it like it is) and he was in the middle of the tiny bed most of the night.  I was clinging to the side for dear life.  If I tried to move him over, he was startled and my sleep apnea hose would drag on the headboard making a lot of racket which would, in turn, rouse Mom from her sleep.  Added to this misery, the furnace would kick in and out at regular intervals, roasting us.  At home, I sleep year-round with the window cracked open for fresh air; the baking heat of the oil furnace was almost unbearable.  I longed for my bed at home, but Carl didn't feel comfortable taking Mom to the bathroom, so I had to stay.

The hospital bed had two rather short rails on it.  I was skeptical if they would contain her if she wanted to get up.  Turns out, I was right.  Despite telling her she had to let us know if she needed to get out of bed, habit and medication won out and sure enough, at 2:30 AM Mom did indeed get out of the high bed all by herself.

Remember, Carl and I had a deal: for the first night he was going to take charge of listening for her so I could sleep with no worries.  Just as the nurse had said about using my 'Mom Ears' and how most mothers sleep lightly when they have a sick child, even with ear plugs in, I still had my Mom Ears on, too.  I don't know what woke me up, but when my eyes adjusted, I saw Mom teetering at the foot of the bed on her way to the bathroom.  I forgot to remove my CPAP mask and dragged the machine halfway off the table before snatching the apparatus off my head.  I whacked Carl and we caught Mom just before she fell.  

Talk about jump starting my heart.

We'd left the portable commode in the doorway and managed to get her seated on the toilet before she had an accident.  While I was waiting for Mom to finish, I looked at my phone's recording of the night's events.  Mom had sat up in the hospital bed for over five minutes.  Then she carefully slid to the floor from her high perch and tottered to the side of our bed.  She nudged Carl several times, but he never moved.  She turned to go around the end of the bed,  but lost her balance and half fell down next to Carl who was oblivious to the fact anything was going on.

She sat there for another few minutes before getting to her feet one more time.  She pushed on Carl's feet several times, but he never moved.  I know he's tired, but wow.  Apparently men do not have Mom Ears.  She was on her way to my side of the bed when I woke up.  Phew.  So much for getting any deep sleep.

Saturday dawned bright and early and so did Mom.  She was still feeling poorly but was up for the day at 6AM.  I got her up to the commode, back to the bathroom for her teeth and into fresh clothes for the day.  Carl was seated in the living room and wanted to know if she wanted to play solitaire on her old computer.  Sadly, she was willing to try, but lacked enough coordination to drive the mouse.  She also forgot how to play the game, too.  I left Carl patiently explaining how to put a three on a four and deal another card as I worked on making some breakfast for us.  

We all felt like we had hangovers, not that I've ever been much of a drinker, but if this is the way people who habitually drink feel afterward, I think they need a new habit.  After Carl and I ate, I took the chance to walk back home again and take stock of what we would need at Mom's to live there from now on.

I walked into my house and was amazed at how abandoned it looked after only a five days.  Everything was right where we'd dropped it, the sink was dripping forlornly.  I plopped down in my kitchen chair, put my head down on the table and bawled.  I cried and cried, it's a good thing we don't have any nearby neighbors, they would have thought the worst.  I gave voice to the anguish I'd been feeling for days and it wasn't melodious.

Mopping up my tears, I walked back up to Mom's.  Carl was sitting watching TV with Mom, both of them looking rather miserable.  Mom said her stomach wasn't bothering her, but she was also still suffering the lingering effects of the morphine/lorazepam combination.  She did not want to eat and the only thing I could tempt her with was ice chips.  

David called and asked what we needed, and I told him about the bed escape.  He went and picked up a bed alarm for me and some tiny ice cube trays, too.  He sat and visited with Mom while I got some more work done.

Saturday night's sleeping was just as fitful.  I opted to sleep on the left side of the bed this time since it is clear I wasn't going to sleep well, anyway.  Mom promised to stay in her bed and tell us before she got up, but of course, she forgot again.  Though it scared all three of us, I was glad the new bed alarm worked as promised.  I had just enough time to get to her before she had a chance to get on her feet.  Or fall.  Mom was up and/or restless at least six times that night.

Sunday morning dawned bright and beautiful again, but my mood was anything but.  Even though I'd only been at Mom's since Tuesday, I was starting to miss our home very much.  Mom's countertops and sinks are very short, I have to bend over to wash the dishes, the furnace is a virtual torture device, the bed is too small, the hallways and doorways too narrow and, well, I'll admit it, I was homesick. 

And I was more scared than ever about this whole situation.  She seemed to be improving a little from her darkest hours on Wednesday, but a complete recovery won't happen.  Am I capable of taking care of her?  Tears come far too easily these days, I cry over the situation we're currently in, I cry over what is to come, I cry when I think of losing her.  In short, I'm soggy most of the time.

I have reached out to my friends, acquaintances and medical professionals and have been given wildly varying opinions on my situation.  I value each contribution, I truly do, even though so many of them are polar opposites. 

I had walked down to our house on Sunday morning while Carl was sitting with Mom and came to the conclusion my anxiety would be lessened if I was back on my own turf.  Our house is newer and more accessible even though it is too small to get the transport chair around with comparative ease.  (As long as I steer carefully, we don't bounce off the walls too often.)

 I'd been debating moving Mom here for quite some time; we'd talked about it in the past in that way people have of thinking of the distant future, 'Someday we'll have to live with Mom.'  Well, you'd think I would have had a more solid plan in place after she's lived 96 years, wouldn't you?  Truth be told, I didn't.  Moving in with Mom was always an abstract thought, maybe I won't have to worry about it; I'll put it on the back burner.  Well, the heat on the back burner was now unbearable.  Time to get a plan.

I sat down and asked Mom if she would mind moving in with us.  She immediately shook her head; no, she'd be fine, we could all go home now. 

I shook my head and said, "Right now, you're getting better, but you cannot be alone.  We have to stay with you all the time.  But it would be easier for me at my house if that's ok with you."

"Well.......if it wouldn't put you out, ok, I'll move to your house.  You've been so good to me, I couldn't ask for a better daughter," she said, peering at me tiredly.

Blinking back yet more of those tears of mine, I said, "I could never have had a better mother, Mom.  I love you."

Those three words are still so foreign to Mom, they are just not in her vocabulary, and I could see how they affected her.  She closed her eyes and smiled.  Then she said, "I know you love me.  No one else would do what you're doing.  You have to love someone to do this much for a person."

So, the decision was made to move Mom here to our house.  Our bedroom is far too small for the addition of the hospital bed, so with David's help once again, we installed the bed in our living room.  I stayed at Mom's packing clothing, food, anything I felt we'd need right away while Dave and Carl were at our house, dismantling stained glass lamps and putting them in storage, removing the long library desk to the basement, putting the couch up against the window where the lamps were and moving all the other furniture around.  I had already moved all my exercise equipment, weights and other paraphernalia earlier in the day.

While we were in the midst of the moving preparations, Terry came over for a visit and to pick up the statuary Mom had finished painting for her.  We had such a nice visit; it was good to have someone there to break up the tension and calm my nerves, too.

Terry was very happy with Mom's renditions of her statuary and wanted Mom to pose with the angel plaque for a picture.  (For some reason, I'm having trouble uploading the picture, but I'll figure it out eventually.)

Finally Dave drove back to Mom's house and said, "We're ready to bring her down."

I buttoned her into her little wool coat and put her shoes on.  She teetered uncertainly when I had her stand up and muttered, "I can't believe how weak I am.  What is wrong with me?  Do you know?"

"You've been sick, and it's going to take awhile to get your strength back," I said quietly.

With Dave in front of her holding her hands and me behind her with my arms through hers, we painstakingly made our way down the same four steps that claimed my father's life in 2001.  David was encouraging her with each slow step.  Finally we were to the car.  For the first time ever, I had to help her lift her legs up into the vehicle.  

I locked up the house and crawled in the back seat, trying hard not to sob out loud.  The entire time we were descending the staircase, I was thinking about the last time my father left the farmhouse and also the first time my mother ascended those same steps in 1941 as a twenty year old bride.  Seventy-six years later, she was leaving for likely the last time.

We arrived at our house and finally had her installed in her Lazy Boy in my living room.  The move exhausted her and she fell asleep.  

David and I went back to Mom's house to pick up some of the things that I couldn't fit in the car.  When I walked in the house, I automatically turned when I entered the kitchen and expected to see her sitting in her painting station by the window.
 She'd only been gone ten minutes and already the house felt abandoned.  I sat down in a chair at the table and started to cry.  David reached over and held my hand and we both told stories and talked about our hopes and fears and the uncertainty.  David is not afraid to cry, and told me we have to get our emotions out, stuffing them is not going to help.

After a bit, I felt strong enough to get back to the tasks at hand, but simply looking at the cute little animal statues on her windowsill had me coming undone.  How she loves flowers and her knickknacks, everything is so sweet.

The guilt rose up to hit me; I'm being selfish, I'm taking my beloved mother away from the only place she's loved.

Wednesday, February 22, 2017

What's Next? Part 9: Caregiving

So much has happened since I last wrote.  To put it mildly, I'm overwhelmed at the moment.

Back on February 9, we were anticipating a doctor visit for Mom on Friday to discuss our next move.  Luckily, the pain reliever the emergency room doctor prescribed relieved much of Mom's discomfort at night and she was able to get some sleep.  

Carl was able to come along with us to Mom's Friday appointment so he could hear first-hand what was said.  Dr. W came in the exam room and asked Mom how she was feeling.  Since the Tramadol was working yet, she told him she didn't have a bit of pain. 

"Why did you go into the ER again on Wednesday?" he asked.  

Mom looked to me for the answer.  I told him how Mom had been in too much pain to wait for a February 14th appointment and that the vascular surgeon told us to go to the ER for some more tests.  

"The surgeon's report states there is nothing he can do," Dr. W said.  "There is too much plaque and calcification in the stomach and intestines and the disease is far too progressed to attempt a repair."

Of course, we knew this already from the ER visit on Wednesday, sadly this wasn't news to us.  

We all sat in silence while the doctor viewed his computer screen.  Eventually, he rolled his chair over to Mom and asked if he could push on her stomach to assess any pain.  Mom said it didn't hurt a bit to have him press anywhere.  

The doctor listened to her heart and lungs and sat quietly for a minute.

"Is hospice our only option?" I asked nervously.

"I'm not ready to say your mother is going to die in six months," the doctor said.  "I would like to set her up with gastroenterology and have an endoscopy performed to look for problems in the stomach.  She may have an ulcer we don't know about."

I was taken aback......on Monday this same doctor had suggested hospice and it took me quite some time to accept it was the only option.  Now he was saying he wanted to have a camera put down my mother's throat?  I wasn't having it.  

 "If you thought she had an ulcer, why didn't we do something about it back in October of 2015?" I asked.  "She was in better health then, but she's been complaining of the same ailment since 2013 at least."

The doctor didn't really have an answer; on his way out the door he said he'd be sending the nurse in to make an appointment with the gastroenterologist.  He made us an appointment with the palliative care nurse practitioner to see if she could provide pain relief if we decided to go through the treatment for the possible ulcer.

We took Mom home and debated our options.  I have to admit, I was stumped.  I still don't understand his abrupt change regarding hospice when it was his idea earlier in the week.  Luckily, the Tramadol was still working and Mom had no pain.  Sadly, she also had no appetite, either.  But she was happily back at painting a plaque for Ann.

Ann stopped in on Saturday (the eleventh of February) and we went skiing.  The snow was very sparse in places, but it felt wonderful to be out and about.  We were outside for well over an hour.  Ann had to leave after dinner, and Carl and I were invited to a card party.  Checking on Grandma via the Grandma Cam many times, I was always happy to see Mom painting away.  

On Sunday morning after going up to see Mom, Carl came home and said she was still feeling good and had almost completed Ann's garden plaque.  We decided to take a road trip to Wausau.  Joel promised he would keep an eye on the Grandma Cam while we were gone.  We had a lovely day; there was a stained glass Tiffany exhibit at the museum.  We'd been there in December with Ann and Joel, but wanted to see the lamps and windows one more time before they leave.  On the way home frequent checks of the camera showed Mom going about her daily life, so we took yet another chance and stopped in to visit two dear friends of ours that live in the area. We ended up playing cards until almost 10PM.  It was a day I will always treasure; I knew it was the calm before the storm.

The next day, the Monday before Valentine's Day, Mom was still feeling ok, no pain, but no appetite either.  No change, really.  I received a call from hospice, wanting to know if we were interested in signing up for their services.  The representative came out to talk with us in the morning and it sounded like an option, but we had an appointment in Green Bay with the palliative care nurse practitioner in the afternoon. I told the hospice person we'd get back to her afterward.  

One more time, off to another doctor's office we went.  The NP looked at Mom's test results, the vascular surgeon's opinion, and shook her head sadly.  

"Your vascular surgeon said there's nothing he can do," she said, slowly.  "I'm sorry to say I think hospice is your best option.  There's no cure for this condition."

"Do you think she should have an endoscopy?" I asked.

"No.  I agree with you; there's no point in putting her through more tests.  Even if she did have an ulcer, treatment for the ulcer won't fix the underlying stomach issues.  Hospice would be helpful for you both.  If you want, I'll cancel your gastroenterology appointment."  

I sadly thanked the NP and Mom and I left. 

"Where are we going now?" Mom wearily asked.


"Good, I'm getting really tired of all of this running to doctors," Mom said.

The next morning, Valentine's Day, I was on my way to Mom's on my daily trek to check up on her and to be there when the hospice nurse came back to sign Mom onto the program.  The doctor told me not to give her heart medication any longer; she wasn't eating much so the pills would sit heavy on her stomach.  

I was walking down the road when I heard a vehicle coming behind me which turned into my driveway.  A man got out of the truck and took two gorgeous vases of flowers out of the back seat.  

"Karen!  I have something for you!" Roger said.  Roger is the custodian of our church. 

"Flowers?  For me?" 

"Yes, for you and one for your Mom," he said.

 "Who sent the flowers?"

"I can't tell you, it's a surprise.  You'll find out when you open the card," he smiled. 

"I was just on my way to Mom's," I said.

"Would you like to ride up there with me?" Roger offered.

I climbed into his truck and rode in style to Mom's house.  We sat and chatted awhile; he also has elderly parents who are in poor health though they are both now in a nursing home.  It's not a road I walk alone.  I thanked Roger for the ride and let myself in at Mom's.

Mom was so confused by my showing up with the Mystery Flowers.

Once I uncovered the arrangement and read the card, we both knew who our secret admirer was: my dear friend Terry.  Mom had been doing painting for Terry all winter, and what a blessing that was for Mom, she was thrilled to have the work to do.

At ninety-six, this was the first bouquet of flowers Mom has ever received.

And at 58, this was also the first bouquet for me, too.
The hospice representative came around 11AM and signed Mom into the program.  We were hopeful we wouldn't need their services for quite some time.  

On Wednesday, I walked up to visit with Mom again, like usual.  We had a nice visit and watched some TV together.

Finally, at 1PM, I decided it was time for me to get home and get some work done.  The weather was nice and I decided to take one more chance at skiing since the forecast (which turned out to be correct) was calling for temps in the fifties in less than a week.

I had to walk a bit to find snow since our farm was almost bare, but the neighboring farm had some along the woods, so I crossed the line fence and skied for an hour. 

I stopped to take a break and catch my breath.  I decided to check the camera on my phone and saw Mom was bent over in her chair.  I was surprised since she hadn't said a thing about pain for a few days.  I quickly skied the mile back home and went up to see her. Seeing how much she was hurting, I picked up my phone and called the hospice number.  Less than twenty four hours after we signed on, we were in dire need.

Since we were new to the program, there was an understandable amount of scrambling that had to be done in order to get us some help.  The closest nurse was about two hours away.  Mom hung on with the cramps and both Joel and Dave came when I called them.

The nurse arrived by 6:30PM and immediately sent in an order for a courier to bring out pain killers from the hospital.  We had to wait another hour for the medication to arrive.  Mom had to be given what for her, was a massive dose of morphine and anti-anxiety med in order to get the symptoms under control.  At 11PM the nurse left for her next call with a promise to call me in a half hour for updates.

Dave had gone and bought me a cot to sleep on since Mom's couch is too short for me.   He also drove me home to pick up my CPAP machine and other stuff I needed.  Both Joel and David had to get some sleep.  Carl wasn't feeling well, so he was already in bed at our house.  I was alone with Mom.

Ann came after work to sit with me through the long night.  Ann was going to stay awake while I slept, bless her heart.  But my anxiety was running far too high.  I did lay down on the cot but found myself monitoring Mom on my cellphone.  

Ann left for home at 6AM and I went back to my vigil.  The time stretched on and Mom didn't move much.  She was perilously close to the edge of her bed but I didn't want to wake her.  I sat on the kitchen chair and waited.

At 11AM, another hospice nurse, the one we were to be assigned to, called.  She said she'd be there in an hour.  At noon, Mom was still out of it and the nurse went in the bedroom to wake her up.  

It was a pitiful sight.  Less than 24 hours earlier, Mom had gone up and down the steps in her house without as much as second thought, but now she was struggling to prop herself up on her arm. She was completely confused and unable to say much more than, "I'm so embarrassed."

Imagine waking up from being heavily drugged and finding a stranger peering into your face, asking you questions.  I felt so bad for her.  She'd been asleep since 11PM the night before, the bed was soaking wet, she was sweating profusely, it was awful.  I helped her get up to go to the bathroom to change her clothes, but she couldn't walk.  It took the two of us to get her to and fro, and of course, I was wiping my tears away constantly. 

The nurse said to me, "Are you sure you can handle this?  Wouldn't you rather go back to being her daughter instead of her caretaker and being responsible for all of her care?  You can have all the cameras you want in her house, but from now on out, she will need 24/7 care.  She cannot be alone."

I had to admit at the moment I'd have given anything to just be her daughter again.  This was a nightmare.  

Mom was confused for the rest of the day.  She wanted nothing to eat or drink and was in and out of sleep.  I had a doctor appointment and an IV treatment for my Lyme treatment in the afternoon and though I should have cancelled it, Carl wouldn't hear of it.  It is very hard to get in to see my doctor, he is in high demand.  We had to leave by 1PM.  I made a quick phone call to my dear next door neighbor, Gloria, and asked her if she could sit with Mom just until Joel could get here from work.  Bless her heart, she was available.  

Carl told me to try to sleep in the car on the hour drive to the doctor, but sleep wasn't possible with the goings on in my brain.  When I arrived at my appointment, my blood pressure was a 'tad' elevated, 202/103.  The doctor wanted to know what was going on and when I explained the situation, he understood.  He also said it was a good thing we got hospice involved, and to remember if this situation becomes untenable, that a nursing home is always available.  "If you become more ill, how will you care for your mother then?  Sometimes we have to do what is best for ourselves even if it seems selfish to others."

As the doctor was talking, big fat tears were sliding down my face.  I hadn't gone home to change before the appointment and was still wearing what I'd slept in the night before.  I looked a fright and felt much worse.

The doctor also said that stress is very hard on the immune system as is Lyme disease, so the fact I'm not making a lot of progress physically is more than likely due to my lifestyle at the moment.  I have to figure out a way to balance all of this and soon.

I had my IV treatment and sat watching the second hand on the clock tick by.  Joel was staying with Mom and I was wondering how it was going.  Plus, Joel has Abby and little Audrey at home waiting for him, too which made the time go even slower.  Finally, the hour was up and we were back on the freeway headed for home.  

I texted Joel to see how things were going and he said he was sorry, but she got out of her chair and fell down when he turned his back for a minute.  I know he felt awful, but this is the nature of aging and illness; two days before she was as steady as a rock, but with all the morphine lingering in her system, she was still incapacitated.  She survived the fall with no injuries, thank goodness, she's still tough.

When I got home, she was sleepy and not at all hungry.  I thanked Joel for staying with her and he was on his way home to his family.  Carl and I sat down in the kitchen after I put Mom to bed and tried to figure out a strategy.  Since I didn't trust her not to get out of bed and the cot was too long for the kitchen, we pulled a Lazy Boy out of the living room for me to sleep in.  I put my CPAP machine on her kitchen table and propped myself up in the chair for my nighttime vigil.  Carl took what was supposed to be a short nap on the cot, but fell asleep until 4AM.  When he woke up he was stiff and miserable and had a full day's work ahead of him.

I didn't sleep much at all.  The CPAP mask kept slipping and making squeaky noises all night which would wake me up every time I dozed off.  Mom was up and down several times that night.  Every time she woke up she was confused, why was I there?  What happened to her?  Why am I so weak?  

Every time I'd put her back in bed she'd say, "Ok, you can go home now."

I'd kiss her on the forehead and tuck her in.

The next three days, from Thursday to Sunday were just a blur.  The social worker came on Friday and talked to me again, encouraged me to get some sleep and asked what I needed.  I was too groggy to know what I needed.  I haven't experienced this much sleep deprivation since Joel was a baby.  Everything seemed like it was moving way too fast and yet far too slow.  

"Lucille," the social worker said, "Do you want to stay in your own home or do you want to go to a nursing home?"

"I want to stay here," Mom murmured.  But then her head came up, "But........I don't want to be a burden to my daughter."

"Ok, you'd like to stay here, that's good.  We can do that.  We just need to come up with a plan of action," the social worker said.

She proceeded to get on the computer and order a hospital bed, commode, transport chair, diapers, cleansing cloths, and a bedside table.  She also said if I was too tired, she would see about providing me with five days of respite care at the nursing home so I could get my act together; she'd be back to give me the results in an hour or two.

By this time, Carl was home and I wanted nothing more than to go home and get something to eat and maybe, just maybe, lie down on our waterbed and sleep.  I waited for two hours at Mom's and when the social worker didn't come back, I walked home.  The sun felt so good on my back.  I put a piece of toast in the toaster and was just setting out a plate when the phone rang.  It was Carl, telling me the social worker was back and needed to talk to me.

I put the toast down and looked longingly at my bed; put my shoes and coat on and walked back up to Grandma's again.  By this time the home health equipment company was there delivering all of the above furniture and as I walked in the door I bumped into a courier delivering more medication.  The social worker and Carl were standing in the kitchen; we all shuffled from side to side as people needed to get in and out.

Apologizing profusely, the social worker said she was wrong, the local nursing home did not offer five days of respite care.  They did offer fourteen days, however, but the cost was $8000 up front.  Huh.  That's a trifle steep, I thought.

I imagine the high price is to discourage people from making the nursing home be a temporary fix; they want people to live there, not visit.

I really don't remember much more of what the social worker had to say; it was a blur.  In due time all of the medical moving personnel left and so did she.  We were left in the gathering darkness to contemplate how our life had changed in less than two days.


Thursday, February 9, 2017

What's Next? Part 8

Wednesday morning dawned sunny for a change which was a nice change of pace for us here.  Of course, with the sunshine, the weather has also turned colder.   The pictures in this post were taken last week when we had a bit of snow on the ground for skiing.  I did ski up to my mother's in the morning, but had to stick to the line fences to find enough snow to work with.
Early in the morning the nurse from Dr. W's office called me to let me know she'd been able to secure a February 14 appointment with a vascular surgeon instead of February 28.  I was glad to hear the news.

My relief was short-lived, for when I arrived at Mom's a half hour later, she was bent forward in pain, clutching her stomach.  She had tried to eat a little breakfast, but the end result wasn't good.

"Do you know what is wrong with me?" she asked.  "How long do I have to go on like this?  I can't tell you how much it hurts."

I picked up the phone and called the vascular surgeon's office myself.  I explained to the scheduling nurse the severity of Mom's situation and asked if there were any way someone could see her sooner than the fourteenth.  

I was put on hold and talked to several parties before the physician's assistant came on the line.  He said in light of the fact Mom was in such pain, I should take her back to the emergency room and while she was there, the surgeon would ask for additional tests to be run and possibly be able to see her in between his surgery commitments.

Mom was still hunched over in her chair and I helped her stand up and go to her bedroom and lie down for a bit and rest.  In the meantime I went back home and got ready to take her to the ER again. 

I called Joel and told him what was going on.  He felt the same way I did; take her in and see what happens.  I had skied to Mom's house, but to cut down on the time, I walked home instead, talking to Joel while I dogtrotted home.

I quickly crammed the essentials into my brand-new purse. (Yes, I had to buy a purse.  I don't usually carry anything more than a wallet and my car keys, but with all the elder's appointments, I've found a need to stash more than my pockets can accommodate)  I couldn't drive Grandma's Buick to the hospital because it was still at the automotive garage for an oil change.  The Buick is easier for Mom to get in and out of but all we had was my aging Pontiac. We had to make do.

I gently woke Mom from her fitful nap and helped her change her clothes for the trip back to Green Bay.   

"What does my hair look like?  I have to comb it.  Are they going to make me feel better? I wish someone could do something about these stomach cramps.  Is this the doctor who can help me?" she asked, grimacing in pain as she ran the comb through her hair.

"I hope so," I said. 

"Do you think this is going to ever end?  I know you want me to eat, but I'm not hungry.  The sight of food gags me.  What are we going to the doctor for today?  Is it for my foot?  Are they going to make my stomach better?" Mom asked tiredly.

 I answered her questions one at a time while I debated changing lanes on the freeway bridge.

We arrived at the ER at noon and I was sorry to see over twenty people already sitting in the waiting room.  Oh, boy, it was going to be a long wait.

Mom filled out her paperwork and we found seats in the crowd of coughing, feverish, retching, bleeding contemporaries.  It was going to be a long, long day.   One after another, people filed into the ER with various maladies, each one seemingly more ill than the next.  One young, impossibly thin woman arrived in a wheelchair clutching a bucket, retching helplessly in full view of the assembled crowd.  People looked at her and then away.  First come, first served.

Seated across the aisle from Mom and I was a black couple.  They looked rather impassively at Mom and I and then their eyes slid away.  Mom's attention was drawn to them because they were both apparently deaf and were using sign language and making guttural sounds to communicate.  I did my best to distract Mom from openly staring for whenever she looked at them, they looked back at her immediately.  Finally the man pulled his stocking cap down over his eyes and tried to sleep while his lady friend seated in front of her walker kept surveillance on the crowd.

On the other side of the aisle another elderly lady with a walker was seated with her middle-aged daughter.  The elderly lady kept leaning forward around her daughter to glance at Mom and whenever she did, Mom smiled at her.  I could tell she would have liked to talk, but her daughter kept her back to us, intent on her cellphone.  The scene reminded me of two timid little girls exchanging glances with each other but too shy to take the next step.  I was hoping the daughter would glance my way, but our eyes never met.  Both of our roles were reversed; I would have loved to have visited with her, too, but she remained fixated on her phone.

Seated next to me was a handsome man with a teenage son.  Out of boredom, we were all fitfully watching Dr. Oz and the latest 'Sugar Detox Challenge and What Happened To Me When I Quit' (or some reasonable facsimile; the volume was down too low to hear any dialogue).  In a low voice, I asked him how long he'd been waiting at the ER.

"Oh, let me see.......a little over two hours," he sighed.  

And yes, I asked a total stranger what was wrong.  I was prepared to be told to mind my own business which would have been his right completely, but such was not the case.

"I was taking a shower this morning and when I raised my hands over my head, my arms went numb.  I've had nineteen surgeries; carpal tunnel, my knees, my foot, and my back; it comes with the territory of swinging a hammer in the construction business for over thirty years.  But I knew when my arms went numb, I'd better call the doctor.  He advised me to come here.  I had to pull my son out of high school to drive me over."

We had a long talk; discussed children and marriage and his business;  he and his wife are about to celebrate their 25th wedding anniversary.  She has 'frou-frou' furniture upstairs in their living room that is way too hard to sit on, so he has his own man-cave  in the basement where he resides in solitary comfort. Sometimes his sons come down and watch a movie with him.  But he was very proud of their upcoming anniversary; and when I congratulated him on the longevity of their union, he said, "We're in it for the long haul; too many people throw in the towel way too easy."  

Then his name was called and off he and his son went.  We wished each other luck.

After an hour, Mom's name was called and we went back to triage.  She had her blood pressure taken and an IV line put in.  They drew several labs and then sent us back to the waiting room again.

A lady in a wheelchair arrived.  She was a bit heavyset like me, and around forty or so, with her neck in a brace.  She was on the phone trying to reach her employer, her friend, her insurance company, anyone she could think of.  Because we were all crammed in the room like sardines, we could all hear her phone conversation with no effort at all.

"Yes, hello?  I'm not coming to work today. I was in a car accident.  I'm at the ER, waiting to be seen.  No, I didn't get hurt in the accident.  I got hurt falling out of the wrecker truck.  Yes.  I missed the step and fell flat on my face on the highway.  Am I ok?  Well, apparently not, I'm at the ER after all.  I don't know when I'll be back in to work.  I don't have a car now, the left front tire is pointing in toward the engine, I don't know when I'll get it back.  No, it wasn't my fault; some guy was turning into Wal-Mart off of Main Street and drove right into me.  I couldn't avoid him.  And then the tow truck came and gave me a ride but when I got out of the truck I missed the step and fell.  I had back surgery a few months ago and I'm afraid I've hurt my back again."  

Repeat the above story, to her credit, almost verbatim, six times as she made one call after another.

Another middle-aged couple arrived and sat across from us.  The lady had her thumb wrapped up in a huge wad of gauze and was wiping tears from her eyes as she tried to get her cellphone out of her purse one-handed.  Her husband was already on his cellphone before they were seated.  Mom and I sat in silent patience, trying once again not to stare.  The minutes dragged by while the couple texted.  I was looking over the lady's head to see what the next show on TV was when our eyes inadvertently met.  

I took a chance.  Gesturing to her thumb, I asked quietly, "Stupid question, but what happened?"

"I caught my thumb in a meat slicer," she said, once again wiping tears from her eyes.

"Oh no! How bad is it?"

"I don't know, they just wrapped it up and sent me back to the waiting room before I get stitches.  I won't look at it.  I'll get sick," she smiled shakily through her tears.

"How long have you been here?" I asked.  

"Not as long as you," she said. "You were here before we walked in. Normally we come in the middle of the night, this is a whole new experience for us.  There are so many people here.  I guess bleeding doesn't count for much of an emergency."

At that moment, Mom's name was called again.  I wished the lady good luck and she returned the favor.  Mom was taken back to the exact same room we'd occupied on Sunday.  It was now 2:16 PM.

I helped Mom disrobe and into her hospital gown, the nurse brought her heated blankets and then we were left to wait for the ER doctor.  In about forty-five minutes a young doctor came in the room. 

"Hi, I'm Dr. O.  I see from your chart you were just seen at the ER on Sunday.  What brings you back?"

I explained the situation and he frowned slightly.  "I don't understand why they told you to come back to the ER.  We've already run extensive tests on her two days ago.  There's not much else we can do at this point."

I told him the cardiologist's office had recommended we come in and about the possibility of him ordering further tests.  

"Well, ok. I'll check with him; he is in the hospital today, but in surgery. We'll see what we can do."

Mom and I settled in to wait some more.  The blood pressure cuff had been placed on Mom's arm and was taking a measurement every fifteen minutes.  One reading of 204/84 set off an alarm which was very loud.  Her blood pressure meds have been discontinued at this point since she doesn't want to eat.  Mom startles easily and the intermittent beeping made it impossible to talk.  I finally pushed the button for the nurse and someone came in and reset the monitor.  Mom's stomach cramps were coming and going, and the nurse asked if there was anything she could get for us and then left us alone again. 

I turned on the TV and searched for something to watch.  The hospital has cable and all of Mom's favorite stations weren't available, so we ended up watching TLC's 'My 600 Pound Life'.  Ironic, wasn't it?  An 89 pound woman watching a 596 pound woman struggle with her life.  One doesn't want to eat ever again and the other one can't quit.  

We sat through the preliminary part of the story; how the lady came to be in this situation, how at first she was proud of her weight and celebrated her life, found love with a man who is attracted to overweight women, married and eventually had a daughter.  But now the daughter is eight years old and the mother cannot play with her or even fit through the chain link fence to the playground.  Her joints hurt, she is breathless and miserable.  Time to change.  She goes to a bariatric surgeon, is scheduled for surgery, and then meets with opposition from her husband who is angry with her for wanting to lose weight; for cryin' out loud, her weight was what attracted him to her in the first place, and now she wants to get skinny?  Why buy a hot dog when you can get a steak?  (I'm not sure what that comment meant.)  Yikes, it looks like they are headed for a divorce.  (I know, these shows are all about the drama, but when you're sitting with your anorexic mother in yet another hospital room, sometimes ridiculous drama is just what you need.)   Mom was very interested in the entire show.

Around 4PM, the doctor came back in again and pulled up a stool by Mom's bed.  I turned off the TV, sadly we will never know if the marriage survived the bariatric surgery.  

"Ok, Lucille..... I talked with the cardiologist, Dr. T, between his surgeries.  He's reviewed your CT scan from Sunday and said there's nothing he can do for you.  Your stomach arteries are calcified and with your advanced age, he feels the risks of surgery far outweigh any good outcome.  There's a possibility you would die during the operation.  The reason your stomach hurts so much is because you have limited blood flow to the intestines and the stomach itself which causes cramping.  I'm sorry they sent you here.  It bothers me to see patients sent in a big circle from one doctor to another and then to the ER and back home.  We're basically the grunts of the medical field; we see people in crisis and then send them up the pyramid to the specialists.  I'm sorry you made this trip for nothing.  I will be calling your general practitioner and consulting with him; I suggest you make a follow-up appointment with him when you get home to discuss your options.  As I said, it bothers me that you had to get your mom back into a car and haul her here for no good reason."

As he was talking, tears were streaming down my face.  I have been pretty good about crying in public lately; I know Mom is 96 and we will have to part, but the helplessness of standing by while she is in pain is dreadful.  And hearing the news that there is nothing else they can do is hard to take at any age.  I apologized for my demeanor, but he said he understood.  He gave Mom a prescription for a painkiller and wished us luck.  We were free to go.

The nurse came in and took out the IV and left to get a wheelchair. I helped Mom out of her hospital gown and back into her street clothes.  The nurse arrived with the chair and wheeled us back out to the lobby where we waited for the car to be brought around.  I was standing behind the wheelchair as we waited, wiping my eyes. I didn't want Mom to see my tears.

Suddenly I sensed we weren't alone in the lobby; seated directly across from where I was standing were the two hearing impaired people again, once again, staring at us impassively and then looking away.  I looked at them and smiled a tiny bit, and motioned to the man to get his attention again.  His dark eyes met mine with a bit of suspicion, but when he saw I was trying to talk, he came to life.  

I motioned to his lady friend and asked him through my crude sign language if she was going to be ok.  He shook his head yes, and smiled emphatically, gesturing to her and then to his right knee, showing me in pantomime that she had fallen and her knee had swollen up to huge proportions.  But now the doctor had fixed her up.

"Oh, no.....did she fall on the ice?" and the lady joined in with signing, telling me yes, she did fall on the ice, but she was going to get better.

Then the man motioned to my mother, pointing at her, shrugging, as if to say, "Is she ok?"

I shook my head.  No.

The man held up his hands in a questioning manner.  I rubbed my stomach and made eating motions, and shook my head, telling them that Mom no longer wants to eat.

"Why?" he drew a question mark in the air.

I said, "Her stomach won't let her." I made a wincing face, "It hurts when she eats, she doesn't want to try any more."

The man drew a circle which I understood to be a bowl and showed a person eating and asked out loud, "Soup?  Eat soup??"

"That's a good idea," I said, but then I broke down completely.

The large man stood up to his towering height and came toward me, planted a kiss on my cheek and hugged me tight.  Then he walked to Mom's wheelchair and showed her he wanted to give her a hug.  She embraced his face in both of her little hands and he gave her a kiss on her cheek and a warm embrace.  He stood up, placed his hands in a praying gesture and told her he would pray for her and for me.  The lady in the walker also clasped her hands in prayer and motioned to us both.  The man came over and hugged me one more time and said, "I love you."  

I thanked them both, by now I could hardly see through my tears.  The car was already there and we were holding up traffic. I thanked them again and wheeled Mom out into the frigid air.  

All the way home Mom kept saying, "They were so nice, weren't they nice?  I've never been hugged by a black man before.  And to think he would want to hug me; a complete stranger.  And they are going to pray for me."

"Yes, Mom, they were very nice," I said as I navigated the stop light and turned the car back into rush hour traffic.  "What a blessing they are."

All the way home Mom marveled about their kindness.

Finally, at 5:30 PM we arrived back at Mom's house.  I helped her walk up the steps.  When she opened the door to the kitchen the heat greeted her and she luxuriated in it, "OH, thank goodness, it's so nice and warm in here!"

I helped her with her coat and asked her if she wanted to eat.  I told her the nice man at the hospital suggested soup and she didn't balk.  "Maybe I could eat some chicken noodle soup."

I scurried to her cupboard, but there was no soup on hand.  Drat.   At that moment Joel walked in.  He came to help with the sensitivity on the cameras installed in Mom's house; I wasn't sure the cameras were picking up everything.  He did some adjustments and then we rode to town together to pick up Mom's new prescription for pain and acquire some chicken soup.

We were back in less than an hour and while Joel showed Grandma pictures of baby Audrey on his phone, I set about warming the soup and setting her table. 

Nothing perks Mom up more than seeing little Audrey; she simply lights up with joy; she loves her so much.

Soon it was time for Joel to go home and for me to leave, too.  I hadn't had much to eat all day, though I did grab one of Mom's now-detested Ensure drinks before we left for the hospital at noon.  (They are rather medicinal tasting...)   She's sick of chocolate flavored anything now, so I'll have to hunt for something else she may like.  

She took her pain pill before she went to bed.  Watching the camera playback this morning, I see she was up once but then went back to bed.  I had a fitful night of sleep, waking several times to check the camera.  I was surprised when I turned it on this morning to find her surveying her next painting project, a large concrete raccoon which she had asked Joel to move to the kitchen painting station last night.  She was using a wire brush to remove the algae on the statue.  

I sent Joel a text message, 'Another day here on the farm.....Up and at 'em...wire brushing a raccoon.'

Joel came back with, 'Taken out of context that would be a very strange text.'

I made a few phone calls this morning; Dr. W wants to see Mom on Friday and we've been told to keep the cardiologist appointment next Tuesday anyway.  I've been told hospice is very helpful, I'm hoping the doctor can steer me in the right direction.  

For now, I'm on my way to see her again this morning.  Per the camera, I can see she's playing hymns on her organ in the living room.  If I hurry, I can sit and listen without her knowing.

I'm blessed.


Tuesday, February 7, 2017

What's Next? Part 7

This week has been shaping up to be a rollercoaster without the nice calm ride to the summit.  I'm dreading the feeling of being out of control and the gut-wrenching plummet to the bottom.  As always there's nothing I can do about it, what will be, will be.  Que sera, sera.  (Doris Day always made it seem like such a cheerful song, didn't she?)

On Saturday afternoon, Ann came over and went skiing with me.  Carl wasn't feeling well, he's come down with a cold and was suffering with a fever and chills.  Ann and I went about three miles from home and Carl came and picked us up so we didn't have to ski back into the cold west wind.

  (Ann is the pretty, young brunette behind yours truly.)

After our skiing adventure, we had supper back at our house.  I made a big batch of popcorn and was happily munching away on it, when BAM, I chomped down on an old maid and instantly, searing pain shot through my upper jaw.  Oh, no.  After about a half hour the pain subsided a bit, but the ache never went away.  I ate the rest of my supper very cautiously.  I had a bad night of tooth pain and inhaled Ibuprofen judiciously which at least allowed me to get some rest.

Soon enough I had other things to take my mind off the pain in my tooth.  Mom started to feel worse than ever, her stomach cramps were unrelenting.  Carl was also down and out, lying flat in his Lazy Boy, so I was on my own with her care. 

Mom on Sunday February 5, 2017
It has been a year since Mom went to the hospital with congestive heart failure.  A long year, but we have had some very good times, too.  Her days had been filled with her painting, she's been hard at work on garden statuary and plaques for a friend of mine. 

Mom loves to paint and thank goodness she does, as it gives her something to look forward to through the long days of winter.


On Saturday night when I went up to give her night meds, she had already gone to bed.  I sat on her bed and we talked after I had her swallow her pills.  She had no appetite for days and no matter how I tempt her with her favorite foods, it is all for naught.

After she eats, she feels awful.  And if she doesn't eat, she feels awful too.

 After seeing how she felt on Sunday morning, I took Mom to the ER on Sunday afternoon.  She hadn't eaten much of anything for several days and her weight has now dropped to an alarming eighty-nine pounds.

She had a CT scan done and the results came back with some sign of poor circulation in her stomach.  All of her other test results came back fine.  The time crawled by slowly as we waited for test results.  Mom had to drink some liquid for the CT scan and it was all she could do to get it down.  

While I was sitting in the ER, I received a text from Ann.  "Where are you?" she asked, and I told her which hospital we were in.  In a few minutes, Ann joined us in the room.  What a nice surprise, and how much faster the time went after she arrived. 

The ER doctor sat by Mom's bed and told her she must do her best to eat even though she doesn't want to. 

"Try eating small meals, or snacking here and there throughout the day," he said.  "There's no need to eat a huge amount of food, but you have to keep up your strength. If you don't, you'll eventually end up in a nursing home with a feeding tube."

"I don't have an appetite," Mom said, "The sight of food makes me sick.  How am I supposed to eat?"

She has a point, though it is hard to imagine not ever wanting to eat.  I told her I'd give her an eighth of my appetite and she wouldn't have anything to worry about.   

The doctor asked her if she's been depressed.  

"No!  I'm not depressed!  I have my painting to do and I look forward to it every day.  I'm not sad, I just don't get hungry.   My stomach hurts all the time."

The doctor shook his head sadly.  He reiterated the snack and small meal suggestion along with any of the bottled meal replacement drinks she could tolerate and told me if she gets worse, I was to bring her back to the ER.  We were sent home at 8pm on Sunday night.  Ann had a nice warm blanket in her car and lent it to me to wrap Mom up in for the ride home. 

"Ann is such a wonderful friend," Mom said, snuggling into the blanket.

Yes, she is.

On Monday morning I called the dentist bright and early for an appointment and was able to get in later in the afternoon.   In the meantime, I had to take Mom to another doctor in Green Bay in the morning for a hearing test, arriving home at noon.

When I arrived at the dentist in the afternoon I was very happy to see the Novocaine needle; the pain had been unrelenting for the last three days.  The dentist was thinking I'd only chipped out a part of the tooth but all hope was lost when he grasped the molar and half of it came out in one piece.  

"Oh, no!  This isn't good," the dentist said, "You've broken the tooth in half all the way to the root.  You must have been in a lot of pain since this happened.  You should have called the office, we have emergency hours."

I told him I had called, but there was no answer.  He was perplexed and said he'd look into the answering machine issue.  For now, let's get this tooth outta here!

I shook my head in agreement.  I couldn't talk, there were too many hands in my mouth. The decision was made to pull the rest of the tooth and send me home for at least four months to heal.  Ever since Monday my poor tongue has been exploring the vast gap where my former tooth resided.  At least the aching agony is over anyway.

I visited Mom after my dentist appointment and found her to be just about as miserable as she was on Sunday.  I went to buy her some more meal replacement drinks and urged her to at least try to sip on them during the day.  She went to bed by 8:30pm and I watched her on the cameras from home; it looked as if she spent the entire night in bed.  However, Mom said she was up several times; so maybe the cameras haven't caught all the activity?  I'm not sure.  I checked on her several times during the night since I don't sleep well when I'm worried.  She was always in bed when I checked in.

In the morning I made an appointment with her general practitioner.  Mom wasn't happy to hear she had yet another appointment but as long as he was 'going to do something about her stomach' she was willing to go.  She can still walk very well with no assistance; it is truly amazing how strong she is.

Doctor W. said,  "How are you feeling?"

"Do you know what hell feels like?" Mom asked.

"No.  Why?  Do you hurt that badly?"

"Yes.  I feel awful.  I'm so tired of this pain," Mom said, sitting hunched in her chair.

Dr. W went over her results from the ER visit and seemed sad. 

"You're a young 96-year-old," he said.  "You walk well, your mind is sharp, and you have no other health problems to speak of, but now you've developed this stomach pain.  I can refer you to a vascular surgeon for exploratory surgery, but there are problems with this course of action, too.  Though you're young for 96, your body is still, after all, 96.  Your veins aren't as robust as they used to be, your skin is very delicate and tears easily.  I'm not a vascular surgeon, so I cannot say with any certainty what could be done for you, but you will definitely not bounce back from major surgery as quickly as a younger person.  I could arrange for you to have hospice come in if you do not want to do anything more invasive.  One thing I can tell you is that the more weight you lose, the closer you are going to be to dying.  I wish there were some way to make you feel better faster.  I can write you a prescription for some pain pills until you see the surgeon."

Mom did not want hospice.  So the course she decided on was to see a surgeon for another opinion.  

The nurse came in and tried to set us up with a referral, but the earliest appointment she could make was February 28th.  

"She'll never survive three more weeks," I protested. "She's not eating!"

So the nurse called back and tried her best to find a doctor who could see Mom sooner; but so far, no luck.  She's going to get back to me tomorrow if she's found an earlier appointment and phoned Mom's pain med prescription into the pharmacy.

I took Mom home in the gray drizzle and made sure she was comfortably settled before I left to go back to the pharmacy an hour later.  We live only three miles from town, so the drive is blessedly short.  The line at the pharmacy, however, was not.  And by the time my turn at the window came the prescription was nowhere to be found.  Nope, they had nothing there for my mother.  

Call your doctor and ask them to resend it.  Next!

Ugh.  I left the pharmacy and went out to the parking lot and called the doctor's office again; yes, they had indeed called the prescription in almost two hours ago, it should be there, go back and check again.  I knew it would be fruitless to go back in right away with all the people waiting, so I made other plans...

By this time Carl was on his way home from work and I realized my car needed an oil change.  The car dealership is right across the street from the pharmacy, so I asked Carl to pick me up at the dealership and I'd leave my car there overnight.  Carl came and picked me up and we went back home.  I sorted through the piles of mail and paperwork I've been behind on and then decided to go back to the pharmacy again at 5:30 pm to pick up Mom's prescription. 

As fate would have it, once again the pharmacy did not have the prescription.  Ummmmmmmm, really?  I stood my ground, don't get me wrong, I know the employees are very busy and have a lot of work to do, but this is ridiculous.  I remained polite, but I said they had to check again; it was called in for a second time several hours ago.  Finally after searching around, voila, they found the order but it was going to take them awhile to fill it so feel free to shop awhile in the store or take a seat, it's gonna be awhile.  

Ugh, again.

Another twenty minutes elapsed and I emerged victorious from the pharmacy, twelve little pills in hand.  I was perplexed by the amount of pills written in the prescription for the orders say to take one every four hours for pain and she only has twelve?  And we can't get an appointment until the end of the month?  Oh, well.  I'll have to call the doctor back and see if he can write a new prescription since this one has no refills.

I arrived back at Mom's at 6 pm and found her sitting wretchedly clutching her stomach.  I gave her one pill and said I'll be back later on tonight to see how she's doing.   (Checking the camera, I see she's sitting up at the kitchen table now, so maybe the pain pill did help.)

  My father-in-law has begun his chemotherapy a week ago and is doing quite well so far.  At least things are looking up for him. 

 So, if you've read all of this impossibly long post, I am amazed and you are amazing!  I don't know what I would do without my dear friends during this time.  I also do not know how to move forward with this gracefully, but writing about it eases my mind.  

And a few crying jags, help, too.

All we can do is hope for the best and for minimal suffering.  

And pray.