Two weeks ago, Mom had a dramatic worsening of her multiple system atrophy, which culminated in a week-long hospital stay. She is back home now, but things are very different from before, so we are all trying to process what the heck just happened, and figure out what to do next.
Part I: Four days of tears and laughter
Since the beginning of this year, Mom's symptoms seemed to be getting worse faster, but as of February 5th, she could still sit at a table in a manual wheelchair, hold a glass to drink, talk fluently, if with some slur, participate with about 20% of the work of transferring her from a chair to bed, and Jarred and I were preparing to to move off of my parents' property by February 12.
This was taken while we were on a trip for Mom's friend's birthday in mid January.
Unfortunately, on Wednesday, February 10, Mom spiked a fever to 106. The day before, she had been more weak, and twice, she had severe choking episodes. Pop told me she said to him, "I'm going to die this weekend." But she and Pop had a terrible experience in the hospital the last time she was there in 2011, so they were afraid to go there. Other than her fever and fatigue, she seemed ok, and her other vital signs were normal for her, so instead, we got an appointment with her primary care doctor. Mom, Pop, Jarred and I met with her doctor and agreed on a plan to start antibiotics and order a basic work-up. Mom declined going to the hospital, preferring to attempt outpatient treatment. The visit and labs took about two hours. When we left the doctor's office, we realized my car battery was dead, so we had to get a jump, which took another hour. By that time, we were all tired and frustrated.
When I checked on her right before we left the doctor's office parking lot, Mom was sleeping in the front seat of Jarred's car (which he got because we weren't sure about being able to use mine). I noticed a little schmutz on her face and started to wipe it with the towel she was sitting on. I had to stretch and pull the towel up to make it reach her cheek, and at the last minute I lost hold and punched her in the face.
Fighting back tears, I grasped her face, horrified, to see if she was OK. Fortunately, she was laughing, and never had any subsequent pain or signs of damage. As we drove home, I called a friend, to tell her about the intense ups and downs of our day. When we pulled up to our house, Zena, our wonderful dog, and Mom's sidekick, was sitting patiently on the porch in the snow. I had put her out before we left and forgot to put her back in. She was out in the freezing weather for four hours while we were away. Needless to say, she was ecstatic to see us (wiggling her nubbin of a tail as only a Rottweiler can do), since I'm sure she thought this time we really had left her forever. I called several friends that evening as Mom slept quietly to go over the roller coaster of a day.
That night she had a fever to 104, and drank more liquid than I had seen her drink in a month. The next day, she was quiet, and her hands were bending in a strange way, her body more stiff. As the day went on, she stopped talking completely, and started falling asleep. I called her doctor about the labs, and everything was normal. No signs of infection at all. We discussed the possibility that this might be the MSA progressing and so there may not be a lot to do. Pop and Mom had started discussing hospice a few days earlier, at the same time that she was considering if she would want a feeding tube. I hung up the phone feeling defeated. Mom was quiet, sleeping. She was minimally interactive.
This picture is from that morning. I don't remember why I took it, but I remember thinking she seemed peaceful, calm. And I remembered being torn between fear and acceptance, and as usual, thinking she is beautiful.
The words she had said to Pop two days earlier were echoing in my brain. As doctors, we hear anecdotally about dying people who seem to know when they are dying, and in some ways, they even seem to choose the moment. I wondered if she said those words because she was afraid of that happening, or because she wanted it to happen. After about thirty minutes of debating whether there was anything else to do, and considering the very real possibility that there was not, I called her neurologists. One of them called me back a few minutes later and was adamant: "A fever of 104 or 106, even in MSA, is an infection until proven otherwise." A wave of hope washed over me. We spoke with Mom's doctor again and at Mom and Pop's request, decided to bring her to the hospital the following morning for a direct admission. Getting ready for bed, I told Jarred, "I just want to wake up tomorrow and have her back to how she was two days ago."
The next morning (Friday, February 12), I ran downstairs to see how she was. She smiled at me and slowly said, "Good... morning." I felt another tentative wave of relief. We sat her up to give her her morning pills and orange juice, and I spilled some on her lap. She paused, and said, "First day on the job?"
My laugh was so loud, it startled even me, the laugh that can only come when your loved one seems to be near death and then abruptly seems to have recovered, sense of humor intact. We discussed as a family and decided not to take her to the hospital. She had not had high fevers in 24 hours, and seemed much better. Even her hands had relaxed. So we all relaxed as well.
Over the next two days, things stayed about the same, sometimes slightly better, sometimes slightly worse. Her sister came to see her, and Saturday passed without event. Unfortunately, Sunday (Valentine's Day), she again spiked a fever to 104. Twice. Jarred and I were nervous, and after much more discussion, strongly encouraged Mom and Pop that she really needed go to the hospital. At this point, as a family, we were nearing the end of our abilities, and as doctors, we were worried there may be something treatable that we were missing. She was requiring much higher levels of assistance, sleeping more, and eating very little. So in spite of some signs of improvement, it was becoming too much for us to handle at home.
Part II: The hospital
I will not go through the details of her hospitalization. Perhaps someday as the topic of another post I will write about the experience of being a doctor daughter for Mom in the hospital. We went where my husband works as a hospitalist (a doctor who only sees patients in the hospital), so she got outstanding care. Her primary care doctor is one of those remaining few who also rounds on his patients in the hospital, so he oversaw her entire stay. But even so, there are so many inherently moving parts to a hospital stay, at times, even I was overwhelmed, and I loved working in the hospital.
Due to her difficulty speaking, we decided as a family that one of us would be with Mom at all times. So Pop, Jarred and I took turns staying by her bedside and spending the night with her. Once again, I have to acknowledge how amazing my husband is, seriously. I am so exceedingly grateful all of this happened during time when he was off, because I can not imagine having tried to navigate it without his support and help.
Over the following week, she had an extensive work-up, including a CT scan, labs, and consults by neurology and infectious disease. For the most part, everything was normal. We started treating her for severe constipation, and also stopped some medications that may been causing something called serotonin syndrome. This is basically where too much of a certain nerve chemical builds up in the body and causes fevers, rigidity, tremors and other symptoms. Still, throughout her admission, she continued to have temperatures ranging from 98 to 102. Her mental status waxed and waned. Sometimes she was talking, slurred, very slowly and with effort, and other times she was staring into the distance, or only able to respond with eye blinks. She also could not express herself easily with inflection or subtle facial expression.
Throughout the eternity of that week and in spite of her fluctuating speaking abilities, Mom's humor remained in tact. At one point, Jarred and I were with her, and he asked me about days he should request off between April and June. I didn't have any suggestions. Mom quietly and carefully said, "Mother's... Day.. is in... May." We both looked at her and smiled. "Your right mom, he should take Mother's Day off." We do not have children. She meant that he should spend that day with his mother. She thought a bit more, and managed to get out, "Saint... Anthony's... Day. Is in... June." I got it. "You think he should take a day off for St. Anthony's Day because Anthony was Grandpa's name?" Mom's father, Tony Cardillo, died several years ago. Mom smiled faintly. "I was thinking... more... like... four... or five... days." Jarred and I both cracked up at that.
We also discussed with Mom's doctor how long it took her to eat and her difficulty getting in adequate nutrition. She has lost a lot of weight over the past few months. At one point during the hospital stay, she was prescribed a pureed diet due to her difficulty swallowing (a symptom of the MSA that seemed to have worsened with the fevers). The next morning, for breakfast, she was served this appetizing dish. Five points if you can guess what the brown stuff is:
Delicious, and nutritious! #nofilter
She did not eat it. And it's a pureed cinnamon raisin bagel. Obviously. Happily, she was able to get back to soft foods as her fevers improved, but given her weight loss, she did decide to get a feeding tube, which was placed without any difficulty on February 18.
Finally, by Saturday, February 20, we felt we had exhausted all avenues of exploration regarding her fevers. We had ruled out anything treatable or dangerous, common and uncommon, and we were all tired. The constipation or serotonin syndrome both might need some time to fully resolve. So in discussion with her doctor, Mom and Pop decided to go home. At least there, as a family, we could start to resume life a bit more easily, and maybe she would recover better. Besides, she missed her dog and horses.
As we got ready to leave, Mom looked exhausted. We took two cars, and I drove behind her. For the entire half hour driving home, I watched Mom's head drifting further down and to the right, her sweet, fuzzy pony tail bouncing on top of her head with every bump. She didn't have the strength to hold her head up. I cursed this disease through gritted teeth and blurry vision. We got Mom into bed as quickly as possible, and then collectively let out the breath that I think we had been holding for the past ten days.
Part III: Home again
Home sweet home
Since she has been back home, things have continued to wax and wane for Mom. Her fevers have improved and the constipation is resolved. All three of us have been doing her tube feeds, and we rearranged the house in order to fit in a nice hospital bed that Pop found. I'd like to give a quick shout out to the VFW. Navigating the world of medical equipment, disability, costs and paperwork has been more mind-boggling than I ever would have imagined. A doctor and a lawyer/engineer have struggled to make sense of it all. But Pop was advised to go to the VFW, so he went, and told them he was a vet. He walked out with a free, new hospital bed. No questions asked. No paperwork. He said he felt like it was a gift from God. Mom definitely seems more comfortable on this bed, and it is much easier to maneuver for her various needs.
After a week of being home, I am just starting to breathe again. Things have not improved much from when this all started. Mom still has a very difficult time speaking, and sometimes can not talk. She can only drink and eat tiny amounts at a time. Her body is much more rigid and her hands have bent again. She can not stand at all, and is very weak. She started home physical therapy and occupational therapy this week. There was one day in the middle of the week where she was talking more easily and her hands seemed relaxed, but other times, and as the day goes on, she can only respond with eye blinks or single syllables. It has been a shocking change for all of us to adjust to in such a short time. We don't know what is coming next.
Yesterday, I asked Mom if she was still getting pleasure each day. She said yes. I asked if she wanted to continue what we were doing, and she said yes. I have tried to imagine how I would feel, struggling to and at times unable to speak. I told her I was angry that I was missing her jokes. She told me, "You're missing a lot." For all of us, that has been the hardest part of our current version of normal. I told her I didn't know what to write about these past few weeks, but I felt like I needed to write. She said, "You need to write. You should write what you see." Considering how much effort it took for her to say those words, I am taking them to heart. And what I see is that my mom is a stronger person than I can ever imagine being. And MSA sucks.
I also found an old voicemail I had saved from a Christmas several years ago, in which she tells me she loves me, and "Remember: no depression allowed. So, find something to be cheery about!" And another message from the day after my birthday in July, in which she tells me that she is looking at a picture of "Pizza, grilled, and it looks yummy." That is my mom, always looking on the bright side. She still insists, "I just want to get better." She smiles a lot now to let us know when she likes something or is happy. Her smile makes my heart melt. She can still say "I love you," and she continues to want to fight. She is determined to get back up again, to keep moving forward, just as she has been throughout this disease.
So that is what we are all going to do too.
This cilantro was on our window sill the Thursday before going to the hospital. It seems to get Mom's approach. When you fall down, get back up!
As a brief post script, March is MSA Awareness Month. Mom and I have a few plans in mind to celebrate this, barring any new unexpected events, so check back in a couple weeks! And a sincere and heartfelt thank you to everyone who has shown their love and support for Mom and our family during this crazy time.