Saturday, October 26, 2013

Today I Am A Horse.

"Today I am a horse. Dear God, did you have to make my poor old horse lose his shoe just before the Sabbath? That wasn't nice. It's enough you pick on me, Tevye, bless me with five daughters, a life of poverty. What have you got against my horse? Sometimes I think that when things are too quiet up there, You say to Yourself, `Let's see, what kind of mischief can I play on my friend Tevye?'" (Fiddler on the Roof," book by Joseph Stein and music by Jerry Bock, lyrics by Sheldon Harnick. Pocket Books, 1965, p. 23).

My wife of some twenty-seven plus years, bless her heart, has secondary progressive multiple sclerosis.  She is no longer able to walk, nor work, has difficulty at times speaking with fluidity and recalling words that she wants to say.  She is not in complete control of her bladder, and is frequently struck by the kind of fatigue that sneaks up on you, requiring you to find a nearby spot to lie down and take a nap.  These days, she spends a lot of time in her bed. 

Her disease has progressed over the years, a progression that was accelerated by a traumatic event and very stressful period in our lives: when our two young boys were taken away for almost ten months on allegations of child abuse, allegations that were ultimately dismissed by a court after an additional nine months had passed. 

I have documented that story in past Blogposts here.  That’s not my topic today.  Today, I am a horse. 
I’m feeling a little sorry for myself, and what’s worse, I’m also feeling a little guilty for feeling that way. 
I’m not the one with MS, and unlike Tevye, it’s not that my horse that has lost his shoe.  My distress is because this week, my wife’s live-in caregiver lost her ability to care for my wife, let alone take care of herself.  Something happened, and what happened caused me to have to take care of both of them, with a little help from my eldest son.  To add one more complexity, I not operating at 100% myself:  I’m a candidate for hip replacement surgery and am hobbling about with the pain that goes along with that condition.

Our caregiver only moved in two months ago, and since my job of the past five months[1] is more than thirty miles from home, I really needed someone to be home with my wife while I was at work.  Because our eldest son lives and sometimes works nearby, he had been able to come by to rescue his mom on a couple of occasions -- when she’d ended up on the bedroom floor after unsuccessful attempts to transfer back to bed from her bedside commode.  On a few of other occasions, she’d had to grab a blanket and pillows from the bed and make herself as comfortable as possible on the rug until I could get home to assist her.

On Monday, our caregiver began to experience an attack of Hemiplegic Migraine, a condition that was first diagnosed by a neurologist some fourteen years ago.  She suspected that the attack was brought on by the stress of a bad experience at a county medical clinic that morning, where she was supposed to have seen a doctor about getting some prescriptions renewed, but at which things had gone awry.  As the day progressed her condition worsened, so much so that late in the afternoon my wife called to ask me to come home earlier than usual to take our caregiver to the Emergency Room. 

When I got home and walked into our bedroom, I found my wife and our caregiver in our room.  Our caregiver was lying on her side on my half of the bed, her right hand covering her eyes, in obvious discomfort.  Her left arm was paralyzed and it lay limp at her side.  I helped her get up, and she barely made it to the car, as her legs were in tremor.  Her eyesight was very poor; she was hypersensitive to sound; she was dizzy and nauseous, and it looked to me like she was having a stroke.  But she insisted that that was not the case.  She said that the last time she had experienced an episode of Hemiplegic Migraine was a few years ago, possibly triggered by a head injury sustained in a car accident.

I pulled up to the entrance of the Emergency Room at about 8:30 pm, went inside and requested a wheelchair.  An attendant brought one out and we managed to get our caregiver out of the car and into the chair.  The attendant asked what was happening, and she told the attendant the name of her condition: Hemiplegic Migraine.  She was wheeled inside, and by the time I moved my car and went back in, she had already been taken to Triage.  Like I said, it looked like a stroke, so they didn’t waste any time.

After a few minutes, they let me in and I was directed to Bed #1.  I stood out of the way of everyone and watched as a nurse administered a neurological screening exam.  The Emergency Physician had already seen her and ordered a CT scan.  They were monitoring her vitals, she had an IV through which she had already received pain medication and they were about to give her some more.  Unable to move her left arm, both of her legs were in tremor, and the overhead light and loud voices were very uncomfortable for her.  She thought that she might have to vomit.

I asked if they could turn off the overhead light and they did, utilizing indirect lighting.  An x-ray tech came in to take a chest x-ray while she was in bed, during which I left the room.  When I went back in, she told me that she had felt dehydrated earlier in the day, and asked the nurse if she could have some ice chips.  Because of her nausea, though, they gave her swabs to put in her mouth instead.

After the second dose of pain medication, she began to itch, so they gave her some Benadryl for that.

When she was about to go for the CT scan, she commented to me that it the results of the scan would probably be negative, as they had been during previous episodes.  I asked the nurse how long it might take for Radiology to provide the results of the CT scan: probably about thirty minutes.  I continued to wait, asking our caregiver a few questions and getting a few answers, although it was not easy for her to talk or to compose her thoughts.  She did tell me this:  most of the people who treated her for these episodes in the past as well as on this occasion were not familiar with Hemiplegic Migraine; she asked them if they would look it up, as it was rare and the diagnosis fourteen years earlier had taken quite some time.  She told me that she had experienced less than a handful of episodes of the condition since that first diagnosis.  The most recent episode, the one after the car accident, had resulted in her being hospitalized for about a week. 

I called home to speak with my wife, who was hungry for dinner, so I decided to make a quick trip home.   I heated up some leftovers for each of us, then returned to the ER.  The CT results had just come in and our caregiver/patient was right: they were negative.  The decision was made to admit her, and a room was readied.  At about 11:30pm, I accompanied her as they wheeled her up to her room.

Waiting in the hallway while the attendants got her settled, I went back into her room to ask if there was anything I could bring for her from home, but she was pretty out of it and asked if I could call in the morning.  I wished her well and left for the night. 

Just before I went to sleep, I did a GOOGLE search on Hemiplegic Migraine, got several hits, and read one article.  The term was well documented.  

After getting ready for work the next morning, I gave my wife breakfast, and packed her lunch and snack in our Ben & Jerry’s cooler, which I left on our bed for her.  I fed the dogs and called the hospital to see what I could bring for our caregiver.  She only wanted a few items, so I collected them, packed my own lunch and left the house.

It took me about twenty minutes to get to the hospital.  While walking from the parking lot toward the main entrance, I noticed a tall man approaching the entrance from the opposite side of the driveway, and as he walked, he was talking on his cell phone and putting on his white coat.  It turned out that he was the neurologist on his way to visit our caregiver/patient, so I introduced myself and we rode the elevator together.  I told him what she’d told me about her history, as well as the name of the neurologist who had diagnosed her migraine variant fourteen years before.

I watched as he administered a neurology screening exam, during which our caregiver/patient mentioned that she had tried to get in to see a local neurologist, one who had seen her in the past, and she told him the other neurologist’s name.  Unfortunately, that neurologist was no longer accepting new patients.  But she was in luck, he replied, because her former neurologist was now on staff with that same hospital.  I left the room for a few minutes so they could speak privately.  When he left, I went back in and she told me that she thought that she was going to be discharged.  That frightened her, because on a past occasion, the tremors she was experiencing had progressed into convulsions and she didn’t want that to happen again.  

A few minutes later, another doctor, a hospitalist, came in and spoke with her.  I mentioned to the hospitalist that it would be most helpful if she could speak with the caregiver/patient’s former neurologist who was now on staff, asking about our caregiver’s history.  She said that she would do so, and I left for work.

I spoke with my wife during the day, neither of us knowing what we should do.  On my way home from work, I was at a market picking up some fruit and vegetables when my phone rang.  It was our caregiver.  The hospital was discharging her and she asked if I could come pick her up.  I asked her about her condition, and she said that it was much the same.  I told her that I would be there in an hour. 

I arrived a few minutes early and went up to her room.  She told me that the hospitalist had been very dismissive of her condition.  She’d told our caregiver that she thought her symptoms were psychosomatic, and that there was nothing further that could be done for her neurologically in the hospital.  An attendant wheeled her outside in a wheelchair and I took her home.  The hospital did issue her a prescription for some pain medication to fill at an outside pharmacy.  She was just going to have to ride out the rest of the episode on her own at home.

In that condition, she was of no use as a caregiver to my wife or of any assistance to me as backup.  We were going to have to ride it out, too.  She could barely able to get up and walk to the bathroom, but at least she could do that much. 

On Wednesday night, I fixed dinner for my wife and asked our caregiver if she would like some of what I had prepared.  She accepted it and I took that as a good sign.

The following morning, I had her prescription filled for her.  By Thursday evening, she had some limited use of her left arm and she was slowly improving.  I expected that it would take some time for her to recover from this episode.  We have not been able to talk much yet, as she was not really capable of doing so. 
I hope that by Saturday afternoon, we will be able to have a conversation, and I have invited our eldest son to join us.  My wife is convinced that our caregiver will not be able to provide her with the care she needs.  She may well be right.  I need help.  I cannot possibly shoulder the load I’ve had to carry this week for very long.

As Tevye would likely say, “It isn’t easy.”




[1] In November, 2011, I lost my job of the previous six and one-half years in a massive lay-off affecting 175 people.  Since that time, I have found only temporary employment and have had two extended periods of unemployment.  Thus, I have been my wife’s full-time caregiver for the lion’s share of the past two years.  In May of this year, I obtained my most recent temporary position, one that holds promise of becoming a full-time salaried job.  Thus, I was very glad when two months ago, we found a day-time caregiver for my wife.  When this week’s episode took place, however, I found it very demoralizing. Enough with the celestial mischief, already.