The Practice

Last Tuesday was one of Those Days.  I spent the morning waiting for the AT&T tech to come fix my internet connection (between the hours of 8a-12p), which another technician had accidentally disconnected the day before while working on someone else's phone line.  So much for quality control.  After 90 minutes with the tech and half an hour on the phone, everything was back and running and they had credited my account.  

In the afternoon I had a Care Plan Conference scheduled at Maryhaven, which is basically a meeting held every six weeks for Dad's whole team to get up to date on what's been going on.  I sit down with the head nurse, activity director, and social worker from the nursing home, as well as our social worker, nurse, chaplain, and anyone else available from Hospice and we discuss our observations and concerns, and brainstorm on what changes to make.  One of the decisions we came to was that I needed to compose a difficult letter to someone on his behalf, and I left feeling distracted, but confident it was the right thing to do. 

Immediately after the care plan conference, I met with a representative from the Veterans Association- I've  been fighting to get Dad VA benefits for more than two years and after dozens of letters and phone calls and even having Rep. Jan Shakowsky's office advocate on our behalf, some payments are finally starting to come in.  The representative needed to "verify" that Dad actually lived in a nursing home, was confined to a wheelchair, was incompetent to make decisions...and didn't own a gun (a requirement under the Brady Act).  While productive, the meeting was long and drawn out and after that and the care plan conference, I was mentally fried and ready to leave the nursing home but went back to Dad's room to spend some time with him. 

When I finally did get in the car to leave, I was overcome with a stronger than usual surge of sadness and had to fight back tears.  I had so much on my mind- Dad's unrest at his parents "being there" (it's common for people who are close to death to have visits from loved ones who have already passed), his increasing detatchment from me, the team's general agreement with how quickly he's going downhill, my annoyance with how drawn out the VA process has been- but I was mostly thinking about that letter.  I wanted to get started on it, but really felt that I should go to yoga that evening. 



Morale boosting, indeed

 15 minutes into the practice, I thought that maybe I had made a mistake.  I was going through the asanas and pranayama on auto-pilot, and instead of focusing inward I was trying to compose that pesky letter in my head.  Now I know (or at least I like to tell myself) that everybody's mind wanders during yoga; even the most devoted yogis must forget about their breathing and think about their grocery list or next work assignment once in a while, right?  But I truly didn't feel like I was getting any release from the class, other than a nice hamstring stretch.  Still, I stayed until the end, thankful for some movement in my day if nothing else. 

As soon as I got home, however, I couldn't believe how calm I was.  Sometime between sivasana and driving home I had forgotten about the letter almost entirely and was noticing a sense of peace inside that was missing all day.  I decided to put the letter off until the next day and instead made dinner and caught up on some reading.  I know if I had gone straight home from the nursing home I would have been anxious and distracted and upset the whole night, and am confident that the 70 minutes of yoga was far more beneficial than I originally gave it credit for.  I was reminded that the simply taking time out, breathing, and doing something kind for my body is far more restorative than I sometimes give it credit for. 

A Year

2011 has gotten off to a relatively uneventful start.  I spent New Year's Eve watching a movie with the dog I was staying with, and we were in bed by 10:30p.  On January 1st I went to visit Dad, then went to a neighbor's open house gathering for a bit.  In early January I was especially tied up with work, which provided a much needed buffer between the meetings with my Hospice social worker and calls from the nurse updating me with more signs of Dad's decline- he now requires a more aggressive technique for a supported transfer, is having trouble holding his head up, is haunted by flashbacks from WWII, etc.  But still, the relative stability has been comforting in contrast to the beginning of 2010.


New Year, 2010

 Last New Year's Eve was spent with a group of my closest friends- gathering early for some holiday cheer, dinner in the city, a comedy show at IO (the old ImprovOlympic) and dancing in Wrigleyville until we collapsed into a cab and headed back to Evanston.  In retrospect, it was probably the last evening I was totally immersed in the moment, feeling relatively care-free and happy.  I think of that time now as Before and After, since everything changed the next day. 

I slept late on January 1st 2010, putzed around the apartment, then went to an early afternoon yoga class.  I had been invited to three New Year Day gatherings for later in the day and, and wanted to take a quick trip to Dad's before making my rounds.  The roads were quiet as I drove out to Belmont Village, but inside the residents were milling around .  Dad was in bed when I got to his room, and sat down next to him.  For a few moments I just held his hand and watched him- he looked so calm and the anxiety that had been painted on his face was temporarily gone.  Noel, the nurse said he had asked to lie down two hours earlier, so I decided he was probably ready to get up.  I rubbed his shoulders and said hello.  After a moment I gently shook him and gave him a kiss.  He's always been a pretty sound sleeper, but when I said "Dad" very loudly and rocked him back and forth, I became concerned.  I went to get Noel, who didn't have any luck trying to wake him either.  He then asked if I wanted to call 911, and even though Dad was breathing and had a pulse, I started to calmly freak out.  I did a quick brain scan and decided it wouldn't conflict with Dad's DNR order, and an ambulance was called.

Glenview hospital is maybe four miles away from Belmont, but still it seemed to take forever for them to arrive.  I told them what was going on- essentially, Dad wouldn't wake up- and they checked his vitals, medication list and medical history.  Still unsure how to respond, I did what any normal daughter would have done under the circumstances- I gave the paramedics some room, found my way to a chair in the corner, and stood up.  On the chair.  Not so I could see better, but just Because.  For some reason, it seemed like the Right Thing to do at the time.  So there I stood, while the paramedics poked and prodded and gave Dad all kinds of tests.  Finally the head EMT came over and said his vitals indicated he had suffered some kind of trauma but they weren't sure exactly what, and they wanted to  bring him to the hospital for observation and more tests.

I jumped in the car and got there before the ambulance did.  They had a room waiting for him in the ER, and that's where we stayed for the next five hours while people came in and out, taking blood, pricking his arm, doing EKGs, trying unsuccessfully to get a urine sample, performing a CAT scan, swabbing his mouth, hooking up the heart monitors, etc.  I called a few friends and got many offers for help, but thought I would be able to stick it out.  Sometime around 8p, though, Mom did have someone drive her out with food and Starbucks in hand, and I conceded, welcoming the sustenance and company. 

An hour and a half later, Dad was admitted to the hospital, where he spent the next six days.  The official diagnosis was a severe, undiagnosed infection (judging by his labwork), a series of strokes (shown on the CAT scan), dehydration from the Lasix he was taking, and general failure to thrive.  I sat with him every day, swabbing his mouth, reading to him, playing music, and talking to the staff.  He made a few signs of progress, but still was barely opening his eyes and on the fifth day when I asked his doctor if I should call Hospice she nodded solemnly.  Midwest Palliative & Hospice Care came highly recommended, and within 12 hours of calling we had our own team of doctors and nurses, a social worker, intake coordinator, music therapist, chaplain, CNAs, and most importantly, someone to answer questions and address my fears and concerns.  The next morning they had a hospital bed and two special geri chairs delivered to Belmont, and Dad made the transfer back to his old room.

He remained at Belmont for five months with the aide of a full-time caregiver, until the $10,000 a month upkeep fees finally maxed out his savings and I had to move him to a Medicaid facility.  In the past year we've encountered many more scares, roadblocks, emergencies, heartaches, and just plain frustration than I had anticipated (a caregiver quitting via text message?  Really?)  On January 1st, 2010, I didn't think he would make it another week.  13 months later he's still holding on.