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.

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2 thoughts on “Chat @ Caregiving: Downhill Fast, But Not Fast Enough

  1. Jane – My thoughts have been with you and your Mom and I’ve prayed a soft cashmere throw would find its way to soften some of the terrible decisions you’d have to make. These are the truly tough times. The ones we knew we’d always have to make. I didn’t lay down the like key above because I like that you had to go through this terrible turmoil but it’s my signature of total support for you and the decisions you must make in the coming weeks.

    Hopefully Hospice will now handle some of the burden you have had to shoulder alone. You and your mom have a right to have their best nurses, a truly giften social worker and of course they should have a minister on staff. If the minister is not the one your Mom has been comfortable with all the years of her independence, I wouldn’t hesitate to call in her own pastor. Actually with Dad, I allowed both ministers to visit as it seemed to give dad that actual comfort he wanted. In addition, my best friend from 2nd grade went back to seminary school after 40 years of being a beautician and she spent many hours with dad. I can’t begin to tell you how much that meant to me. Dad not only knew my friend from her having spent hours supervising the 2 of us as he took us to the movies or just out horseback riding and some such activities that two country girls can get into.

    I definitely don’t want to sound as though I’m preaching or telling you how you should things. This is such a personal trip for all of us. Dad had many, many friends over the 94 years of his life and he’d been active in many youth programs and the young people continued to visit him and I was so happy about that.

    Well, we have houseguests that have just arrived. If you ever just want to talk – don’t hesitate to contact me at 501-327-2233. Hugs. Sheri

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