Chat @ Care-giving: The Place for Mom

Straight from visiting Parson’s House Assisted Living Facility, I went to Caruth Haven Court and remember, at the time, I was thinking that Mom might be in assisted living for years.  She hadn’t had the code episode yet.

Though I grew up in East Dallas and thought I knew the Central/Northwest Highway area by heart (after all that’s where Northpark is and I LOVE Northpark), I didn’t know about Caruth Haven Court.  When I take Bodecker in that direction, I’m always on my way to Old Town, which means I jog to the right. To get to Caruth Haven Court, you stay on Bodecker.

After arriving, I had a chat with the marketing person in what they call the Family Room, which was also an example of one of their apartments.  It was quite nice, but also quite small.  I was interested in other choices.  We took a look around.  Everything outside the small apartments looked perfect, but I knew Mom’s vision of her assisted living space was bigger than what was available.  There was one floor plan that I thought would work, but none were available.  I thought another floor plan seemed adequate, but I doubted Mom would.

What I liked best was the dining room.  They were having lunch as I strolled through and it was easy to imagine my mom in the space.  Dining rooms had been the hardest part of assisted living for me to swallow.  In some of the facilities they were just downright depressing, but this was open, airy and full of people who looked just like Mom.  Sure there were wheel chairs and canes and oxygen tanks, but they seemed less overpowering at Caruth Haven Court than at other dining rooms.

I’m a very transparent shopper, so I told them exactly what I was thinking.  I explained the reason I liked Parson’s House, as well as it’s geographic undesirability.  I also mentioned the other two places I still had to see, but I admitted that all things considered, Caruth Haven Court was in the lead.  They didn’t have my first choice of floor plan available and of the only other possible choice they just had one.  I wasn’t ready to put down a deposit, but I did ask for first right of refusal.

Then we had the code episode.  Hospice loomed on the horizon.  On the recommendation of Mom’s doctor we moved to Walnut Place.  He suggested keeping her there, even if we were able to get her well enough to go into assisted living, but Mom decided pretty quickly that Walnut Place was not what she wanted to call home.  Don’t get me wrong, for rehab, Walnut Place was extraordinary and they were a true blessing when Mom moved to the nursing floor, but Mom had visions of a different kind of life for herself.

I became a virtual basket case.  I was caught between the reality of Mom’s true condition and offering her the hope she needed to carry on.  Her only chance was to believe that if she worked really, really hard at her rehab, I’d find her a lovely place to live out her life.  I needed to return to Caruth Haven Court and think about what her life would be like if she were on hospice there. If you are already on hospice, then you can’t move there, but you can go on hospice after you get there.  This time I took Bill with me.  My judgement was clouded and erratic.

Bill could see Mom living there also and he loved their cookies.  When you take a tour, they give you a big stack of remarkable chocolate chip cookies.  I liked them, but Bill loved them.  I’d donated the stack I got from my first visit to him and he was ecstatic when they gave us another stack for the tour we took together.  But we couldn’t commit right then.  There was one other facility within the geographic boundaries that might work and I wanted Bill to see them.  Unfortunately, there was only one apartment available that fit our criteria.  Even though he thought I was right, Caruth Haven Court was probably the right place, he didn’t want to put down a deposit.  We just arranged to have the first right of refusal on that apartment.

The next morning I received a bouquet of flowers from Caruth Haven Court.  Not some big arm-twisting arrangement, just a small thoughtful vase with a sweet card.  It didn’t twist my arm, but it did touch my heart.  I was having some difficult days.

Our visit to the other property was two days later and we’d barely begun when I got the call that someone else was considering “Mom’s” apartment at Caruth Haven Court.  We finished our tour, but at the end we raced back to Caruth Haven Court and put down a deposit.  I was euphoric when I returned to Walnut Place to share the news with Mom.

But she wasn’t feeling well.  The nausea she’d been fighting all week was worse.  We were on our way to hospice.  By the beginning of the next week, I had to call Caruth Haven Court and tell them Mom wouldn’t be coming.  Even if she made it through the crisis that made me call hospice, she’d never be well enough to enjoy Caruth Haven Court’s dining room the way I imagined she would.

One would think that this would be the end of my story, but it wasn’t, because when you choose Caruth Haven Court you become family.  Even though Mom never made it there, they’d gotten to know me and through me, they were looking forward to having Ruth (and her extensive wardrobe) at their facility.  The saleslady continued to call me and check on me in the coming days.  She even dropped by one day to see me at Mom’s bedside.  The deposit was returned to me with no fuss and no ado.  That’s why I had to take time to tell you about Caruth Haven Court.  If you have a loved one in the Dallas area that needs assisted living, you need to visit Caruth Haven Court.  That’s where Ruth would have gone if things had gone the way she wanted it and that’s where you’ll be treated like family.


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 About Care-taking: H is for Hospice

I wasn’t ready for the H word.

At her ninetieth birthday party Aunt Edie was the perfect picture of my hopes for the future.  Surrounded by hundreds people who adored her, she looked at least twenty years younger than her age and could have been modeling for a fashion magazine, rather than presiding over a milestone birthday party.  Six weeks later she complained she wasn’t feeling like herself – but, at ninety, we could all understand her slowing down a bit.  What we didn’t know, was that an uninvited guest, kidney cancer, had also been at the party.

It took about a year for us to recognize our enemy, but by then, he was too entrenched to unseat.  The doctors said chemotherapy might lengthen her life by weeks or months, but the side effects sounded as dreadful as the disease.  We couldn’t know exactly what the cancer would do or when, but chemotherapy promised to make her miserable immediately.  After much prayer and consideration, she decided to put herself in God’s hands without introducing chemotherapy.

I began to call daily to check on her.  Her situation certainly debilitated, but she held on to her great attitude.  Three weeks ago I went for a visit to celebrate my birthday.  She filled up a table at the Stagecoach Inn in Salado with good friends for the occasion.  She seemed to be holding her own.

Then I got a call from her friend, Marilyn.  Marilyn and her husband, Steve,  had gone to a doctor’s appointment with Aunt Edie and the news was not good.  Marilyn suggested I should come down for the next oncologist’s appointment which was a couple of weeks away.  I hadn’t planned on going.   My dad had an important doctor’s appointment of his own the following day, very early in the morning, so Cousin Brenda and Marilyn were going with Aunt Edie.  (Thank God for Brenda, Marilyn, Steve and all the people who are standing in line to help us through this.)  I called Aunt Edie to let her know I’d changed my mind.  Her relief was evident, even over the phone line.

On Saturday she told me she planned to attend church Sunday morning and would be hiding a key for me to let myself in with, since I wasn’t sure exactly what time I’d leave Dallas.  Sunday I called her at about 10 AM to let her know I was on my way.  She didn’t sound 100 percent, but she didn’t say anything about feeling bad.

At the Temple city limit sign, I called to say I was minutes away.  Church was over and I thought she’d be waiting for me to go to lunch with her over in her retirement center’s dining room.  Instead, she said she hadn’t gone to church.  Marilyn and Steve were with her.  When I arrived I saw what a difference three weeks could make to a stage four cancer patient.

Monday afternoon, Brenda and I escorted Aunt Edie to the oncologist.  There was no beating around the bush.  It was time to start hospice.  I don’t have words to put with my emotions, yet.  We’ve scheduled an appointment with the hospice nurse for next week.  I wasn’t ready for the H word.

I know there are many people dealing with this situation.  I’d like to hear your story and your advice.

Chat @ Care-giving: H is Also for Horrible

A few months ago I blogged about how relieved I was that hospice had been recommended for my Aunt Edie. I’d felt so alone and unprepared to deal with her worsening health situation. I’d watched others slip out of this world and into the next with the help of hospice personnel and assumed that what I’d seen before was what my family would experience.

They told us that, at first, someone would just be dropping by once a week or when they were called to check on my aunt.  That was OK.  She was an independent sort and her pain was well under control.    Just knowing someone medical would be checking on her made me feel better about leaving her to return home to Dallas, three hours away, where I provide care to my mom and my dad.

I called her daily and some days that would be a pleasant experience.  Other times I would get off the phone wondering whether her hospice care takers were really taking very good care of her.  My cousin and I would email back and forth, speculating on whether we were doing everything we should.

As the situation escalated we were informed that we needed to be at Aunt Edie’s side more often.  We questioned what hospice would be doing.  Well, the nurse would come by more frequently and an aide would come by a few times a week to bathe Aunt Edie.  Anything else we’d have to provide ourselves, either personally or by payment.  No other agencies could apply for funds for someone under this hospice plan.  I began to wonder what hospice plan.

I have no complaint about the caregivers who were provided, but about the sparsity of their visits.  Each person who came to see my aunt was gentle, knowledgeable, capable and compassionate.  They just weren’t there very often.   Other people I’d known on hospice had a hospice representative with them around the clock.  Sometimes it had been an aide and at others it was a nurse, but the families never had to face the situation alone.  When they told me hospice, I’d coveted those bedside companions.

For a while we hired a woman to come sit with her five hours a day and to provide meals.  My very frugal aunt would stare at the woman who was costing us $15 an hour and fret.  The fretting was more damaging than the solitude.  Aunt Edie pointed out she was merely sleeping most of the time anyway.

Finally, it became clear there was no threshold at which hospice would suddenly provide more assistance.  Aunt Edie had no spouse and no children.  In fact, she lived in a town where she had no other relatives.  She had a lot of friends who wished they could help, but most of her friends were near her age and had no business caring for someone as seriously ill as my aunt; or they worked full time; or they had family members of their own who needed their attention.  So my cousins and I divided up the coming weeks.  In the last days it was too much for one person alone.  My cousin Brenda and I spent the last week of Edith’s life standing by, administering pain killers and wondering every moment whether we were doing the right thing or not.

I’m telling you this because I want you to know that not all hospice is created equal.  If someone you love goes under the care of a hospice team, ask more questions than we did.  When they tell you that they’ll be with you every step of the way, ask what that means.  Ask specifically whether there will be someone there to assist the family
AROUND THE CLOCK in the last days.  Not whether someone will be a phone call away, which we were assured we’d have.  Even when we called, we were merely told that we were doing the right things and admonished to call if we needed anything else.  When we said we needed help, we were told we could have twelve hours of respite care.  We didn’t want respite care – we wanted help.  Our aunt was dying.  We didn’t want to go bowling.  We wanted someone who knew more about this than we did to guide us through this.

We didn’t get it.  After Aunt Edie died…I can’t say passed away; there was nothing passive about it…hospice called the funeral home, removed the medical devices and took the sheets off the bed.  They left a folder for us.  It had a workbook for us to use to labor through our grief.  We threw the workbook away.  We’d made it through Aunt Edie’s death virtually on our own.  We doubted the workbook had much to offer.