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.

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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: 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: 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.

Chat @ Care-taking: Keep it Short and Sweet

In another era, one with a much slower pace than ours, every one knew how long a social call should be.  There were strict rules based on your status, your relationship and your purpose.  The world has changed a lot since then and I’m awfully glad I don’t have to wear a bustle, but those little ladies with their calling cards and tea didn’t have it all wrong.

The basic social call was fifteen minutes.  It was perfectly acceptable to pop-in on an acquaintance, chat for the allotted time and move on to the next call.  Caller and callee knew what to expect and what to do.  It was a good thing.  I didn’t realize how proper this behavior was until the last few months.

My Aunt Edie is one of the most popular people in Temple, Texas. Now that she’s been diagnosed with cancer and put on hospice, many of her friends and acquaintances are still eager to visit.  Aunt Edie loves having her friends drop by and appreciates feeling like she’s a part of the larger world, but there’s a problem – people stay too long.

I can understand why.  I know how hard it is to make time for a social call.  There’s the getting dressed, the traffic and perhaps you’ve even taken time to find a small gift.  After all the effort it takes to get there, some part of your mind tells you that you need to make the most of the visit.  In the first few moments there’s a flurry of greetings.  Hugs, exclamations and compliments.  A seat is offered and refreshments are suggested. Maybe an item of discussion is immediately grasped upon or it could take a few minutes to warm up the conversation.  Whichever way the visit goes, about ten minutes into it, things are really cooking.

For family members and care-givers this warm and fuzzy time is just the warm-up for running errands and completing household tasks, but for anyone just making a social call, after you’ve visited for ten minutes, it’s time to start wrapping things up.   Sick people, elderly people and especially people on hospice don’t have the stamina to tolerate longer visits and they are so grateful for your attention that they’d never tell you.  Some diseases will announce themselves with coughing, nausea or other symptoms that warn a visitor to hightail it, but the visitor can’t count on these clues.  Pain and fatigue can be invisible, especially if the person being visited thinks masking their difficulty is the polite and correct thing to do.  It’s up to the visitor to monitor themselves.  Use the old Victorian Social Call of fifteen minutes as your guide and if you’re still there after thirty minutes, you’ve over-stayed your welcome.

Another battle faced by the ailing is the desire to participate in an event when they know they can’t make it there on their own.  Almost every week Aunt Edie is invited to something she’d really like to attend, but in deference to others, she ends up not going.  It’s not because she’s not given the opportunity to go.  She’ll not only receive an invitation to the event, but several people will call to offer her a ride.  Stamina is the problem once again.

Though it was certainly an honor that both the incoming and outgoing president of Aunt Edie’s service club called and offered rides to their installation recently, Aunt Edie turned both of them down.  She knew they both needed to be there before and after the event, which included a cocktail party, a dinner and a business meeting.  If instead, someone had called and said, “Edith, we want you at the installation.  We’ll have someone come pick you up in time to enjoy the last few minutes of the cocktail party and then the dinner, but we’ll take you home right after dessert.”  Or – “Will you be a part of the installation ceremony.  We’ll deliver you to the event a few minutes before the ceremony and the second you get tired, we’ll take you right home.”  Aunt Edie would still have protested that she didn’t want to be any trouble, but she would have been a lot more likely to go.

If there are people in your life who have been incapacitated by medical problems and/or age, they really do want to see you – in small spurts.  Instead of making your visit a major production, fit it in during a lunch hour, on the way home or in between errands – and do that frequently.  Your senior will be able to enjoy your short visits much more than they could one you took up an entire afternoon with.  And if you’d like to take them out into the world, sacrifice some of your own participation in an event to accommodate their reduced stamina.  This small sacrifice will be a boon to someone who would otherwise be sitting at home.

What other “rules” should we follow with our senior citizens?  How can we be-friend them and be friends at the same time?