Chat @ Caregiving: It Doesn’t End When They Do

I woke up on the morning after my Mom died with a new list of things to do.  Most pressing were the preparations for the funeral, but other things also loomed large, like making all the necessary notifications and changes of address, splitting the financial assets and making decisions about things in storage. Putting first things first, I went to church with my husband, had lunch with our friends, did some grocery shopping and went to the movies.

The next morning my eyes popped open at five AM.  Over at Walnut Place they were waking their patients for the day, but I wasn’t there.  Realizing there was no going back to sleep I tiptoed down the hall to my office.  First order of business was to prepare the obituary.  Mother had graciously provided a folder with some handwritten notes and a picture among her things, so I didn’t have to start from scratch.  I also had my dad’s obituary to plagiarize from, but stuffing all of Mom’s life into 150 words was quite a challenge.

I ran into another problem.  Mom didn’t list her siblings’ names in her notes.  I had no trouble recalling all of their first names and even if I would have, I had photo albums to remind me.  Obviously the guys’ last names were her maiden name.  Three of her sister’s last names were as familiar to me as my own, but not Aunt Gladys’.

I spent at least an hour trying to put my finger on something that would remind me of Aunt Gladys’ last name.  I remembered her house, just off the square in McKinney, and the house they moved to in Allen.  Her husband usually wore wife beaters when we visited, but that’s not what we called them. Aunt Gladys was the pastry cook at the TI cafeteria, but she had diabetes, so she couldn’t eat what she made.  One Christmas she gave me a VERY turquoise VERY mohair sweater.  I remembered my mother lamenting she didn’t have any room for Gladys’ pump organ when my aunt died, but that was decades ago, when details like last names didn’t matter to me.  My solution was to omit the names from the obituary altogether and just say Mom was preceded in death by her mother, father, three brothers and four sisters. If anyone remembers Aunt Gladys’ last name, please remind me.

Next I prepared some notes for the pastor.  He knew my mother well from church, but he didn’t know her early life or what she did professionally or which of our memories were the dearest to us. Fifteen hundred words later, I’d related some endearing moments and impressive accomplishments, but I knew I hadn’t captured my mother in them.  She was already slipping away from us.

Then  it was time to iron her suit.  As my husband pointed out, the only pressing it needed was in the seat of the skirt, so no one would ever be able to tell whether I ironed it or  not – but Mom was serious about ironing. There was no way I was going to condemn her to eternity in a suit with a wrinkled seat.  After ironing, I placed the suit in a travel bag with her jewelry and lingere.  Then it was time to take care of me, but I’d put it off until the last minute – just like my husband put off running an errand in the “good” car.

Just as I rushed out of the bathroom in my funeral-home-appropriate pant suit, my husband returned and handed me the keys to the good car.  I’m usually not particular about which car I drive, but with the temperature still in the high 90’s, I needed air conditioning and the “other” car’s a/c is just about kaput.  With just a little more luck, I thought, I might even have time to pick up a bite.

Well, I had some luck, but only bad luck.  I was halfway across town when I realized I hadn’t brought the freshly ironed suit and its accessories along.  I called my sister, so she and the funeral home personnel would know what happened to me, then I called my husband and told him to grab the suit and meet me somewhere midway.  He’s been pretty supportive of me throughout this whole crisis, but he really didn’t want to get in that hot car and drive anywhere.  Still, the hint of madness at the edge of my voice forced him into the heat.  I was only twenty minutes late, but I didn’t get any lunch.

It was downhill from there and I didn’t have any other appointments until the visitation on the following evening.  Still, I realized that in losing her, I hadn’t gotten rid of my responsibilities as a caregiver.  They were still with me.


Chat @ Caregiving: And Now She’s Gone

About a week ago I put Mom on palliative care and now she’s gone. I got a one day break to pay my bills, catch up on my sleep and think through the days ahead.  Several hours of that day I spent with her.  She rested quietly and though I sat right beside her, I knew she was far away in a drug induced dream.

I’d read  that if I talked to her, she could hear me on some level, so I talked.  I told her who she’d received cards from that day and described a wonderful gift from a friend.  I praised the gentle ministrations of the staff, both Walnut Place’s and hospice. I reminded her of how much I loved her and that I’d gotten every thing in order business-wise, so she didn’t need to worry about it. I told her how sorry I was that her little body had given up on her when she had such a strong will to live. I reminded her that Dad, Aunt Edie and Grandmother were standing at heaven’s gate anxious to have her with them.  I told her a cousin who had been on vacation was headed home, so there was nothing else to wait for.  I assured her that I’d heard her when she said she wanted to go and I’d gotten everything ready to accommodate her departure.  I kissed her on her sweet little forehead and went back to my life.

The next morning I decided to go ahead and make the funeral arrangements.  According to the hospice workers, we probably had a few weeks to go, but there was no use putting off the inevitable.  I made the appointment and then went to visit with her for a while.  Things were very different than they were the day before.  Mom was restless and experiencing some difficulty breathing, so I found the nurse.

The nurse looked at her watch and furrowed her brows, “I just gave her some medication an hour or so ago.”  I told her I could be wrong, but it appeared to me that it had worn off.  Sure enough the bed alarm went off and the nurse hurried down the hall to see what was happening. She dosed Mom again, stopping at the end of the bed to give her a gentle look.  I waited beside Mom, counting the minutes until she got relief.  I counted twenty minutes and though Mom was not worse, she was still very restless and her breathing had not improved.

I suppose my face told the whole story, because I walked out of the room and before I could say a word the director of nurses rushed in and right behind her was Mother’s nurse.  More meds were administered and the director of nurses took me in the hall for a frank conversation.  At best Mom had seventy-two hours.  “Should I stay or should I go to the appointment I have at the funeral home?” She said I should go to the funeral home and she would call hospice to request critical care. She said she couldn’t promise the round-the-c;lock nurses would come and she reminded me that my mother had a habit of rallying, but one way or another I needed to get the arrangements made.

So, I went home, packed a bag and Bill went with me to the funeral home.  All the time we were planning the funeral, my phone was buzzing on the table.  I’d excuse myself, have a hurried conversation and then try to return to the business at hand.  (Note to self:  Funeral home personnel aren’t geared for speed.)  When the documents were finally ready, I signed on the dotted lines and rushed to the hospital.

Critical care had been re-instated.  A nice young man whose name sounded something like Ytakis sat at her side making notes to document every subtle change.  She was improved over her situation earlier in the day, so I suggested that a few people come for their last visit.  We shared a pleasant evening, then I tucked myself into the recliner to catch some sleep.

Mom and I slept peacefully for a while and then there was a lot of activity around 1:30 AM.  Her doses were raised again.  After a bit, she settled down, so I went back to sleep, secure in the knowledge that someone was watching over her.

Around five, the hall started waking up and I gave up on sleep.  There were changes.  Mother’s breathing had become more labored and there was a new gurgling sound.  Later in the morning I made some calls to discourage people from seeing her like this.  I’d been down this road with Aunt Edie and I didn’t want anyone else to have to have those kinds of memories.

The day seemed to inch along and the gurgling worsened.  I could only stand it for so long and then I’d walk the halls.  When I managed to compose myself, I’d return.  All the while the Walnut Place nurses were taking wonderful, gentle care of me alongside my Mom. Ytakis tried to distract me with a discussion of politics, but trying to explain Obamacare to a recent immigrant was more frustrating than distracting.  I went back to the crossword puzzle books I’d been toting around me with me since Mom went on hospice.

Around six they brought me a dinner tray, but as I lifted the lid a new sound filled the room.  I recognized the awful gasping from my vigil beside my aunt.  I clenched my teeth and pushed the tray aside.  This was the moment I dreaded.  I wondered if I would be able to endure the final ordeal.  I stood next to Mom, holding her hand and kissing her forehead.  On the other side of the bed Ytakis was busy doing whatever nurses do in this situation.  In just a few minutes the wet labored breathing stopped.  Mom had finally broken through to heaven.

Chat @ Caregiving: Downhill Fast, But Not Fast Enough

Some things happen fast. Some too fast. Others not fast enough.

A week ago I made a deposit on an assisted living facility. Today I’m trying to wrap my mind around the idea of palliative care. The changes are coming more quickly than I can grasp, but not fast enough to bring my mom the peace and relief she’s longing for.

After my midnight ramble last Thursday night, my husband and I slept in.  We were enjoying our morning coffee ritual, the one where I make him coffee and we spend about half an hour together trying to focus on the positive aspects of our life. Our brief interlude was interrupted by a couple of phone calls.  Mom had been suffering from nausea for several days and nothing seemed to help it.  One medication would put her to sleep, but it didn’t get rid of the nausea.  A crisis was brewing.   The doctor was coming after one and there were decisions to be made. Coffee time was over.

There’s been a lot of doctors in my life lately.  There’s Dr. Alan Kaye, Mom’s personal physician.  There’s another doctor, at the nursing facility, we call Dr. K, because her last name is unpronounceable.  Then there’s Dr. M.  I’m not trying to be mysterious. It’s just that no one can pronounce her name, either.

Dr. M had been the physician who dropped by during my midnight ramble.  Dr. K was the one I was supposed to meet with.  Dr. Kaye is the one I know and trust.  So I put a call into Dr. Kaye and got myself ready to go to the facility.  The next few hours were awful.  Mom was really sick and thanks to the wonders of modern medicine, no one could do anything.

I wasn’t sure what to do, because I was waiting on a call from Dr. Kaye and waiting for Dr. K to show up.  Mom just wanted someone to knock her out, but it wasn’t quite that easy. The nurses on the floor couldn’t do anything without Dr. K’s say so. Taking her to the hospital might have gotten her a little pain medication, but would have opened up another can of worms.  I didn’t want to open that can without Dr. Kaye’s approval.  For all the advances of modern medicine, I longed for the day when the town doctor just dropped by daily and administered laudanum.

To a certain degree, Mom didn’t care what category her health givers put her in, she just wanted some relief.  She was only sure of one thing, she didn’t want that relief to be called hospice.  In her book, that relief was synonymous with giving up and Ruth Cave doesn’t give up.  I have rarely felt so helpless in all of my life.

Finally, at three, Dr. Kaye’s assistant returned my call, but all she did was get the details to pass on to Dr. Kaye.  Within twenty minutes he called.  One thing he was sure of, Mom should not go to the hospital.  He peppered me with questions and I turned him over to the charge nurse. While he was on the phone with the nurse, Dr. K breezed in.

I’m very respectful of the medical profession – from the aides to the doctors .  I respect the training they’ve gone through and appreciate their desire to be in that line of work.  I know I’m not equipped for it.  I’m also very respectful of the fact that these people have lives and cares of their own.  However, I didn’t have much respect for Dr. K.

Dr. K had requested that I be there to discuss my mom’s situation after one.  It was almost four, when she arrived.  I didn’t think Dr. K was showing me much respect.  And when I said she breezed in, I meant it.  I was at the nurse’s station listening as the head nurse talked to Dr. Kaye.  I saw a woman with long blonde hair, a white gauze Indian shirt with beading and clogs.  She looked like she didn’t have a care in the world and I wondered who in the world she might be. As she flung her long blonde hair over her shoulder, someone told me she was Dr. K. The nurse turned Dr. Kaye over to Dr. K, who disappeared around a corner. The charge nurse returned my phone and I was dismissed down to my mother’s room.  Surely something would happen now.

Something did.  Dr. K came in and decided Dr. M had been wrong to put Mom on an IV for dehydration.  I heard her order the IV stopped and lasix to be dosed intravenously.  Some RN came into do that, but he decided the fluid should continue and added the lasix to the drip.  I gave the LVN with him a significant look and as soon as the RN left the room, she shut off the IV and went for help.  She returned with another pair of RN’s who removed the IV and gave the lasix as the doctor had requested.  Can you imagine how my head was whirling?  All this while, Mother is moaning in misery.

Lasix aside, what were we going to do about Mom’s nausea?  Dr. K returned.  I don’t remember her exact words, but she certainly didn’t approve of Dr. Kaye’s opinion of things. She gave me a list of things that she thought could be excuses for overriding Dr. Kaye.  I’ll spare you, but I reminded her that Dr. Kaye had been Mom’s personal physician for decades and that Mom had just been in the hospital.  They said there was nothing else modern medicine could do for my mother and all we were looking for was some relief from the nausea.  Dr. K told me she had other patients she had to see about on another wing.  She stopped at the door and turned to me.  I do remember what she said there, “Hospital or hospice – you’ve got a tough choice.”

She was gone before I could say, “We already made that choice.”  I looked at the clock and it was five.  Five on a Friday afternoon.  Friday on Rosh Hashanah and Dr. Kaye is Jewish.  I sat down to talk to mother.  I laid it all out for her and she said, “I’d put up with anything to get some relief.”  I said,”Then I’m going to call hospice.”  Her only reply was white noise.

The next two hours were excruciating.  Thankfully, I’d followed Dr. Kaye’s request and signed up for hospice without indicating a start date during the week before.  Within minutes, Mom was on hospice, but it was five thirty on Friday and we were waiting for Bernard.  Though I’d been doing everything I could for Mom since I got there at eleven, she was still miserable.  I can’t blame her for her anger and accusations as we waited for Bernard, but that didn’t take the sting out of them.

When he arrived, he got the smile and sweet words I’d wished for all day.  After taking a few vitals he got on the phone and started the ball rolling.  When he left, Mom still hadn’t gotten anything for the nausea, but she felt like something was finally happening.  A continuous care nurse showed up.  I wasn’t sure what that meant, but I was glad for her.  I finally gave up and went home.  Mom wasn’t talking to me anyway.

The next few days were a blur.  Exhausted, I was operating on pure adrenalin.  Were I put on the witness stand right this moment, I could not provide a time line.  I could relay a number of vignettes, but they don’t make any sense.  I know I was there Saturday for a while, but there were no sweet moments for me to cling to.  I know that Saturday night  they called me.  Mom’s temperature was at 95 and her feet were mottling.  We thought this was the end.

I went through all of the motions I’ve been told to go through.  I told her what a good job she’d done in all of her roles.  I told her I loved her.  I told her everything was in order, just as she’d requested.  I told her it was OK for her to let go.  She’d done her job well and she deserved her reward.  But she wasn’t ready to go yet.

I stayed with her through the night.  For a while, I held her hand, hummed her favorite hymns to her and continued the one way dialog about the excellence of her life.  Finally, exhaustion took over and they brought me a recliner.  I went to sleep holding her hand.  I’d done the same with both my father and my aunt during their ordeals.  This felt familiar.

But Ruth wasn’t through.  Her temperature went back up, her feet were no longer mottled and another day began.  For lunch she wanted me to go to Wendy’s to get her a hamburger and a frosty. I fulfilled her request and she had a bite or two.  How many times was Ruth going to go to the brink without letting go?  I took a few hours away from the hospital, but then I packed up a bag and went back for the long haul.  When I returned, they said she’d been asking for me, but now she had nothing to say to me.

Monday morning I handled a few pieces of business and picked out a room on the third floor.  I’d been frequently reminded that Mom was still on the recovery floor and they weren’t really staffed for hospice.  Monday evening the continuous care ended and I was left alone with Mom.  Sure there were nurses out there, but they didn’t seem any better equipped to deal with the situation than I was.  Meanwhile, Mom floated along in a drugged state, rousing occasionally to go through the farce of a meal.  We’d get her up, put on her bib and give her a few bites that she’d chew on but rarely swallow.

Tuesday, around lunch time, they moved her.  I’d been told they would move her on Saturday and so I’d packed everything up.  We’d already lived out of suitcases for three days and by ten thirty I was tired of it.  I got ugly, but I got her moved.  On the nursing floor, I expressed my concern over the way they’d been medicating her. I feared they were over-medicating and she was in there somewhere cursing me.

So they backed off the drugs a little, but if she had been in there, she wasn’t anymore.  She was desperate to leave – telling me her girls would be home from school.  She remembered me as someone she knew, but she sure wasn’t certain who that someone was.  Before the night was over, we were back on morphine.  Less this time, they’d been giving her too large a dose, but it was still her only friend.

In the morning, I met with hospice and put her on palliative care.  I still don’t know if anything I did was right, but God knows, I’m doing my best.  I slept in my own bed with my husband last night.  I must balance the checkbook before I go check on her.  This has all happened too fast, but the rest is not happening fast enough.

Chat @ Caregiving: I Remember Normal

After a midnight call, I was on my way to see Mom. On the phone I reminded her that returning to the hospital was not an option, but I couldn’t roll over and go back to sleep.  If she was awake and miserable, I could at least hold her hand.

For a moment, as I drove through Dallas’s nearly empty streets, it almost felt normal.  Heart-breaking telephone calls, late night drives and medical concerns have been a regular part of my life since July 2010.  Not that I hadn’t gotten heart-breaking telephone calls, made late night drives and dealt with medical concerns before then.  That’s just when they became my new paradigm.

If your current paradigm sounds kind of like mine, do you remember when it began?  Mine started with one small piece of news. A friend’s significant other committed suicide.  It’s odd that I remember this so clearly as the end of normal.  Though my friend is dear to me, she lives in another state and is not a part of my day to day life.  However, when I hung up the phone, that little voice inside my head said, “Put on your seat belt, you’re in for a rocky ride.”

The little voice was right.  It seemed suddenly, every time the phone rang, there was bad news on the other end of it.  My parents friends, people I loved almost as much as my parents did, began to fall like dominoes.  My own friends began to get worrisome calls about their parents.  Then my beloved Aunt Edie was diagnosed with cancer.  By 2011 my normal wasn’t so normal anymore.   We did squeak in a road trip in January, but after that, I was making frequent trips up and down I-35 to be by my aunt’s side.

Aunt Edie lost her battle in July of 2011, but my battle was just heating up.  By October I was moving my parents into an independent living facility.  I knew I was doing the right thing.  It just wasn’t an easy thing.  Then there was their estate sale and Dad had to be hospitalized and then we remodeled their house for the rental market and then…Suddenly it was October 2012 and I was planning Dad’s funeral.

As sad as I was to lose Dad, I knew he’d had a good life and I knew where he’d gone.  We mourned him, but quite frankly, as 2013 started, I got a few months of near normal.  My husband and I took a cruise with my best friend and her husband.  I drug out my novel and started polishing again.  But it didn’t last very long.

May 1st Mom went to the emergency room and has been in and out of medical facilities ever since.  When I crawl in bed, I don’t really expect to sleep through the night.  I may silence my phone in movies and at Sunday School, but it’s only muted, not off.  And I hold it so I won’t miss a call.

Last night when I reached the nursing facility, they’d just given Mom a dose of something new for the nausea.  We got her to lay down and to drink a few sips of water.  I held her hand and soon she was nodding off to sleep.  I slipped away and returned to my own bed.  On the drive back, I reminded myself that this was not normal.  The road back to normal requires a sad turn and I’m in no hurry to take it. But I do look forward to normal and I’ll never take it for granted again.



Chat @ Caregiving: They’re Not Just Things

Today is moving day. We’re not sure where Mom will be moving to, but we do know it won’t be back to independent living.  Under those circumstances, her apartment would be a very expensive place to store things.  The business part of me understands that, but the emotional side is having a tough time.

See her stuff is not just stuff.  Her belongings are a memorial.  Don’t get me wrong.  Mom’s life means a lot more to me than the things she has managed to obtain, but the furnishings of her life do represent the things she loves best. Take all those wardrobe boxes of clothes.  I know right now that she won’t be able to get all of them into the closet of an assisted living apartment, but how do I go about choosing which ones to keep and which to throw away?

Mom grew up in the Depression.  It was tough for everyone, but several things made it tougher for her than it was for some other folks.  Her clothes were the armor she wore to face the world.  If she managed to dress like everyone else, then she felt she would fit in better.  She never told me this, but after decades of her fanatical interest in what I had on, I figured it out.  Multiply that mindset by a career in retail and you know why she has eight wardrobe boxes of clothes, a rolling rack and a couple of boxes and suitcases.  I know it’s been years since she wore some of them, but she’s like the armorer in a castle.  You don’t throw away perfectly good swords just because they go out of style.  You never know when they’ll be just the thing for a certain battle.

Maybe this would have been easier if it hadn’t been just a couple of years ago that I went through the process of downsizing my parents from a house to  a two bedroom apartment.  Now Dad’s gone and the independent phase of Mom’s life is over,  I have to sift through it all again.

In some cases it feels like chopping off my hands.  Dad was a snorer and had long ago been exiled to a separate bedroom.  In the apartment, he slept on the bed they shared during all the years they did sleep together.  I joke that it’s the bed I was conceived in, and Mom’s never corrected me, so maybe I’m right.  To the rest of the world, the bedroom suite is a not-so-gently used collection of mid-century Early American furniture.  Nobody except a homeless shelter had any interest in it. To me, it’s the first time my dad ever bought anything on credit.  He didn’t want to go into debt, so he got a second job to pay off the loan early.  To me, it represented home in all the houses we lived in, as we moved around due to Dad’s job.  I can only imagine what it meant to Mom.  When she asked me what was being done with it, I had to tell her the truth and I could tell it was a physical blow.

Letting go of other items feels like ripping out my heart.  My dad was a sports fanatic.  Not in the sense of being a fan of any particular team.  He was interested in everything from peewee football to the senior golf tour, but baseball was his particular favorite.  He liked to watch baseball, but he liked to hear the commentary on the radio.  How many hours of my life have I watched my dad cheer on the Rangers?  He’d have the TV on and in his ear would be the plug from the radio.  Long before there were sports bars, my dad would line up all the TV’s in the house in the den and have various sports on them – and the earplug would be in his ear.  The radio is in the room of items we plan to donate, but I don’t know if I’ll actually let it go.

And you ask, “So what’s the big deal?  Why don’t you just keep the radio?”  If you did ask that then you’re one of the folks who doesn’t realize just how much stuff I’ve collected from my family in the last few years.  First, from Aunt Edie and then from my parent’s house.  There really is just not enough room for me to keep anything else… but maybe the radio wouldn’t take up so much room after all.

See, the radio has other memories attached to it.  My dad faithfully listened to Rush Limbaugh.  I’m no fan of the self-important blowhard myself, but my dad was. George didn’t use the earplug to listen, so bits and pieces of Limbaugh’s loud mouth opinions were impossible to avoid.  I confess, I now listen to Rush, if he’s on when I’m in the car.  Even if some (certainly not all) of his Conservative views do line up with mine, I detest his presentation.  However, by listening, I can imagine the conversations Dad and I would have – therefore, I listen.

So, it’s moving day today and I know that I’m holding on to more than I should, but how can I let more go?  After all, they’re not just things.

Chat @ Caregiving: SSUURRRRE You’ll Be Back

You know it’s the small stuff that makes you crazy and I’m beginning to think making you crazy is the primary purpose of health care facilities.  Why else would hospital employees wake a patient numerous times throughout the night to draw blood, weigh, take vitals, etc. etc. etc.?  Now that Mom’s moved over to skilled nursing, there’s a little less of that going on, but they haven’t abandoned the most frustrating phrase in all of medicine, “I’ll be back.”

The medical world introduces you to various forms of this promise long before you find yourself in a nursing facility.  Like when you’re sitting in that paper gown on the end of an examining table. “The doctor will be right with you.” Yeah, after I have frostbite.  At least when you’re at the doctor’s office they do eventually appear.  They like to clear out the office before they go home.

In May, this medical odyssey began with a broken arm.   The arm had to be belted to Mom’s waist, rendering her virtually helpless.  Helpless and Ruth don’t belong in the same room.  Theoretically, she was supposed to call someone every time she got out of bed, but once she figured out that she could maneuver the wheel chair with her feet, she was through with that.  However, the task of dressing herself was a little more than she could manage.

Each day, whether by phone or in person, our first conversation of the day included a frustrated rant about people who promised to be right back, but weren’t.  They’d wake her up to give her meds and then promise to help her dress, but they’d never return.  She spent the whole day scheming about how she’d trick them into helping her dress on the following day, but those pesky aides would find yet another way to avoid her.  I began to think it was a part of the rehab program:  frustrate the patient enough and they’ll figure out how to do it on their own.

She did go home after a few weeks, at which time the rehab case manager informed me Mom was a little stubborn.  Oh really?  What was your first clue?

Then there was the first bout with congestive heart failure.  At the rehab facility, some anonymous person would come in and tell her something. Then my job would be to find out who it was and make them do whatever it was they said they were going to do.  The most elusive was a female doctor in a hijab.  In all the weeks Mom was at this particular facility, I never saw a hijab, but every time the woman came to see Mom, she’d leave some question hanging.  Mom put a marker in her brain and would wait impatiently for her return. Had the nurses not confirmed there was indeed a doctor in a hijab caring for my mom, I could have been convinced Ruth was hallucinating.

We’ve been in and out of the hospital a few times since the hijab, but folks are still falsely promising to return.  Mom’s current venue is not ideal.  I bet the “I’ll be back” thing works with a lot of the patients.  I’ve hung out with them.  I’m not trying to be cruel, but the fact of the matter is, some of them don’t know who they are, much less where they are. As soon as they hear “I’ll be back,” they forget it. But that’s not Ruth.

Yesterday was shower day.  Mom hates dressing for breakfast and then undressing for her shower, so she requested breakfast in her room.  When the aide delivered the tray, she asked, “Do you want your shower now or later?”  DUH!!  Who wants to get a shower while their breakfast is chilling in the next room?  So, the aide said she would be back.  Someone else came to pick up the tray and Mom was back in “be back” hell.

Since we seem to be able to regulate everything else when it comes to healthcare, I propose that we regulate, “I’ll be back.”  It should never be an open ended statement.  It should be, “I’ll be back in ten minutes,” or “I’ll be back at seven thirty” or something measurable – and then they should be back.  Heck, the world is so electronic, why don’t the have a channel on the TV that shows where the patient is in line.  Imagine how many calls to the desk that would eliminate.

I can hear all the healthcare personnel defending themselves and I’m not unsympathetic to your plight.  With who knows how many patients, all demanding your attention, I don’t know how you get anything done, but that little “I’ll be back” is part of the problem.  I was only there for a short while, but Mom talked to at least five people about her pending shower.  I have no idea how long ago the shower had been promised, but it was almost ten and breakfast is served between 7 AM and 8:30.  She’d been waiting more than ten minutes.

Someone might argue, “What’s the big deal?  It’s not like she’s going anywhere.” Right – with that attitude you probably have a great future in the geriatric healthcare industry.

OK – I’ll get down off my hobby horse.  “I’ll be back,” isn’t the only phrase that should be erased from human communication.  “No problem,” “Have a nice day,” “How are you,” and “I’m fine” are all pretty useless, too.  Every time a waiter tells me what I want is “no problem,” I know they’re cussing me all the way to the kitchen.  And there’s a new one, “My pleasure.”  Sure and I’ll be back.

Chat@Caregiving: A Medical Miracle

I love Dr. Alan Kaye.  He’s my mom’s doctor.  I could rave for days about the outstanding care he’s provided her over the years, but I also appreciate how good he’s been to me.  I’ll never forget when he told her, “Mrs. Cave there’s a time when your children should obey everything you say, but later there’s a time when you need to pay attention to your children.  For you, that time has come.”

Not that his admonition did much good.  Sure Mom listened to me, but she only did what I suggested if it suited her.  She ignored other things Dr. Kaye said, too.  It took him several years to convince her to use a cane and two more to get her using a walker.  See canes made people think you were old and walkers were beyond the pale.  Still Dr. Kaye and I kept herding her towards what was best for her. Moving her out of her home and into an independent living facility nearly got both Dr. Kaye and me fired from her life.

So, on this latest trip to the hospital, when everyone who treated Mom insisted she needed to be in assisted living, I called Dr. Kaye.  The only response Mom would offer to the suggestion of assisted living was white noise, but I knew the cardiologist and hospitalist were right. I’d been suggesting the same thing to Mom for several weeks, but she was more vocal with me.  She had no problem saying, “NO!”

Dr. Kaye agreed with me and I had the support of family members, so when I sat down next to her bed and said, “Mother, I know you don’t want to discuss this, but it’s my responsibility to do what’s right for you,” she actually listened.  I spent the next two days shopping assisted living facilities and was narrowing down the list when she coded.  I’m not sure what color the code was, but there were forty people in her room and we were discussing resuscitation.  After they pulled her through, assisted living was off the table.  The new recommendation was hospice in a nursing facility.

I spent Sunday mourning Mother’s condition.  Her mind and her spirit had so much living left to do. How could I put her in a nursing home?  That was the one thing she never wanted to have happen.  Monday, I visited a nursing facility, but it felt all wrong.

I freaked out.  My husband tried to reel me in on the phone.  I called some of Mom’s friend to get their input.  I was literally driving around Dallas aimlessly.  Thank goodness my car had Blue Tooth.  I was on Greenville Avenue, headed south, but I had no idea where I was going.  I thought, “God please help me.  I don’t know what to do.”

That’s when the phone rang.  It was Dr. Kaye, but it was also a miracle.  I’d been so distraught I hadn’t even thought of calling him. However, he’d been watching Mom’s progress via the hospital’s computer system (he doesn’t make hospital visits).  He talked me through the choices and we came up with a plan.  Not one that either of us wanted, but one that offered the most hope.

He also told me he was medical director for a hospice group.  “I’ve enjoyed being your mom’s doctor over the years and I’d be honored if you’d allow me to continue taking care of her…and of you.”  This had been a serious concern for both Mom and me.  Just a few hours before she’d said, “If I go on hospice, I’ll lose Dr. Kaye.”  Now I could at least relieve one of her concerns.

Tuesday I moved forward with the plan Dr. Kaye devised.  We’d put her in some rehab, to see if we could improve her situation at all and with any luck, she could spend her last days in assisted living with the help of hospice.  I wasn’t happy, but I didn’t feel so desperate.  Then the hospitalist walked into the room with the oddest expression on her face.  She’d had a call from Dr. Kaye and he’d asked if Mom was a candidate for a new medical procedure. The hospitalist and the cardiologist agreed that Mom was not a good candidate, but I could tell the hospitalist had been shaken by Dr. Kaye’s involvement.  I explained that Dr. Kaye was very fond of my mom.  “In fact, I have to remind him sometimes that I’m the daughter and he’s the doctor.”  I’d been joking, but the hospitalist said, “I got that vibe,” and her face still reflected a sort of wonder and awe.

After another long day at the hospital, I vegged out in front of the TV with Chipotle.  Hubby was at a meeting and I was trying to wrap my mind around everything that had happened in the last week.  The phone rang and it was Dr. Kaye.  I remember trying to figure out if I’d called him or not.  I hadn’t, but there he was on the phone – again.

This time he explained why he’d inquired about the new procedure and why he agreed Mom shouldn’t have it.  Then we discussed, in more detail, what we were going to do with Mom.  This time he was insistent that I call hospice.   That was the part of the plan I hadn’t gotten Mother to buy into.  I tried to explain her position to him and he said, “I’ll come by to see her tomorrow after 1:15.”

“But Dr. Kaye,” I stammered, “you don’t make hospital visits.”

He didn’t argue with me.  He just said, “I’ll see you tomorrow after 1:15.”  OK, Dr. Kaye.

He had a wonderful visit with my mom.  There were tears and hand holding.  They confessed their love for one another.  Mom was so grateful he had come.  He said, “I have been your doctor for a long time and I will always be your doctor.  When you need me, you call me and if I need to come see you, wherever you are, I’ll come see you.”  He also explained why being a part of a hospice group had become as important to him as the rest of his medical practice.  They don’t make ’em like that anymore.  I call Dr. Kaye my medical miracle.