This note was originally published on Facebook on August 31st, 2016
Today marks one year since my mom’s AVM surgery. Some of you are familiar with this story, others are not. In March of 2015 she had an MRI that revealed a congenital tangle of veins in her brain. Having been put on blood thinners for a heart stent and a carotid artery surgery following a mini-stroke that prompted the MRI, this increased the risk of it bleeding and surgery to remove it was recommended.
What was supposed to be a five hour surgery turned into almost 12 hours. We got updates every two hours in the waiting room, as the day turned into night, each update more worrisome than the last. Finally, she was out of surgery and in recovery. One of the surgeons came to speak to us. They told us the AVM was far more complex than imaging had shown, and ruptured during surgery flooding her brain with blood. They had stabilized her they said, but she wasn’t out of the woods yet. We slept in the waiting room: a lounge with couches, TV, and kitchenette designed for the comfort of families of patients with hours- long procedures. The morning of her surgery, a family had just woken up and was leaving wearily, as we entered the room cheerful and full of hope. The next morning, we were that family.
Our mom was in a coma for almost two weeks. She was put on a feeding tube and trach, both of which she still has a year later.
Going into this, she expected to either recover, or worst case scenario not come out of surgery. The risk of the actual outcome was uncertain, and unexpected. As such, she did not have an advance directive, power of attorney, or living will. My sister and I have been living in a nightmare of only being able to guess what we think is best for her. It feels like sometimes every decision we have made for her has been the wrong one. The amount of guilt and regret we feel weighs down on us every single day.
My aunt had come up from Mississippi to be with her, to talk to her while she slept, motionless. Every slight movement was reported: the slightest eyelid flutter, tiny twitch of the foot, gentle squeeze of the hand. She stayed at my mom’s apartment at night to look after it, and came back to the hospital every day. While she was here with us, her son Steven had come back home. He met up with old friends, and died of a heroin overdose on September 11th. My aunt returned home. I was in Pensacola Beach at the time, in a friend’s wedding the next day. There wasn’t much I could do at the hospital, so I was there. I flew back that Sunday, went to work Monday, and drove with James down to Biloxi on Tuesday for my cousin’s funeral. My mom was starting to regain consciousness, and we all agreed not to tell her for fear of setting back any progress with heartbreak.
After 18 days in the ICU she was moved to a transitional hospital where her speed of recovery astounded everyone. In just a couple of weeks she was able to take a few steps assisted in physical therapy. They were working on capping her trach so she could speak again and eventually have it removed so she could eat again. The speech therapist rushed her though, fed her pudding when she had choked on water the week before and two days later she was unresponsive with pneumonia. It was the day she was supposed to be transferred to acute rehab to eventually come home. She could have recovered to the point of walking and talking and eating again. But this was the turning point where she would not. I blame myself every day for allowing her to go to that horrible place.
Later that month we made the difficult decision to end the lease on her apartment and put all her belongings in storage. We couldn’t afford the rent on a home she would never be able to come back to. We could only do so much without power of attorney; and without being able to speak or write, she was unable to sign one in her condition. We had to hire a lawyer, and go to court to deem her incapacitated and become her legal guardians. Because she had a retirement account, we were also forced to become her conservators in charge of her finances. In the midst of this, her FMLA expired after 12 weeks at the end of November and she was terminated from her job while in the hospital. We were suddenly responsible for hundreds of dollars a month for her insurance to continue her care.
Around the holidays she was moved back out of the ICU after having a shunt placed in her brain, as the scar tissue made it so that her cerebral spinal fluid could not be reabsorbed, filling her cranial cavity with fluid if not drained. She has never been the same since the shunt surgery. It’s hard to describe, but while she’s herself sometimes, other times she isn’t. Another setback was that she kept getting infections while she was in a new transitional hospital, and was moved into isolation. I have had to wear a plastic gown and gloves to see my mom every time I visit her since December. Because of the constant infections, an infectious diseases doctor recommended we consider hospice if she did not stop getting them within three months. She did stop getting the infections after being moved to isolation and that doctor is an asshole.
Holidays in the hospital came and went: Thanksgiving, her 59th birthday, Christmas, New Years. In January my whole world was turned upside down again when it was announced that my job of almost 12 years was ending. The company had posted poor profits the previous two quarters and decided to close our entire office of 750+ employees. I’d been given more than 60 days’ notice, however, my intermittent FMLA was in effect for an entire year. This meant if I started a new job right away that I would not be allowed FMLA for six months to a year. This is why I have remained unemployed since March, and have turned down most people’s gracious offers to help me find work. It won’t help me if I get fired from jobs constantly for unexcused absences. I might as well use my unemployment insurance. It was a blessing in disguise, I hated that job anyway; but the impending layoff certainly added to my stress at the time.
My sister and I have been visiting her every week, or nearly every week, up in St. Charles. It was only a few minutes from my work, but after no longer traveling out that way every day it has become harder and harder to make myself leave the house some days to go. She can only mouth words, sometimes I can understand them and sometimes I can’t. The initial surgery seemed to have damaged the optic nerve on her right eye and she can’t see well enough to read or write most of the time. Communication with her is done through her gestures, our series of questions, and with lots of frustration and patience on both sides. At some point she became awake and aware enough to realize what was going on and wanted to leave the hospital. She has tried, and succeeded a few times, to pull out any of the things attached to her: catheter, IV, feeding tube, and trach. She had to be put in restraints with her wrists strapped down. She somehow kept getting out of them and still pulled things out. Very dangerous since she has no way to communicate if she is in distress. The nurses nicknamed her Houdini because they could not figure out how she was escaping her restraints. It’s funny, but a horrible thing to witness your parent going through.
The staff where she has been the past nine months is amazing. Insurance, however, is a horrible underhanded thing. They will only pay for certain therapies if she is making progress. If she hits a plateau, as she does often, she is dropped from therapy five times a week to only once or twice. She will seem to get better, then get worse, then get better again. It’s been an unimaginable roller coaster seeing her progressions and setbacks. The biggest one lately has been chronic respiratory failure. Once you have been on a ventilator for more than a few days in the ICU, your chances of ever living independently from one decrease. It definitely doesn’t help if you’ve been smoking for 40 years and have untreated COPD.
On Mother’s Day we went to visit her. She was almost as unresponsive as she was in a coma. All she could do was lift her eyebrows slightly to acknowledge us. We were quite upset. The next day we each received a phone call from the hospital. Earlier in the day my call was to tell me she was back on a ventilator. Later my sister’s call was from her pulmonologist telling her mom would likely be on a ventilator permanently, and that we “needed to make a decision.” Thinking he meant we needed to make a decision immediately, we rushed up to the hospital expecting to see her motionless as the day before. We were shocked to see her sitting up, chatting, alert as ever. The respiratory therapist had found her that morning, barely breathing and saved her life. She was retaining so much carbon dioxide that she was barely conscious, and the ventilator had brought her back from the brink. It turned out the pulmonologist had meant a decision long-term, and was also an asshole for telling us “it’s too bad you’re not willing to let her go.”
It’s been pretty steady since then. On the ventilator for 12 hours, off for 12 hours. She does well in therapy, she progresses, she plateaus, and she backslides. The cycle continues. Until a few weeks ago.
Since the insurance kept refusing to pay on some days, the hospital needed her gone. They gave her another shot to get off the ventilator, and she has so far succeeded. Then they gave her a shot getting off the restraints, by having someone sit with her for a few days constantly to watch her. She did well on that, too. Yesterday we got a phone call that she was being discharged to a nursing home today. A place we had never been to nor approved her to go. I was furious. I knew that having her moved to another facility meant upheaval for her. It also means she will never progress to the point of coming home. This is what we have been dreading for some time now. We know her best chance is not to ever drive, or work, or live independently again. Our best hope for her is that she is eventually able to eat and speak again. Hopefully walk, too. That would be amazing.
I won’t even get into what a nightmare the financials have been. We didn’t know at first that we would have to dump her entire retirement savings just to get her long term care. The more we talk to people older than us, the more we find out that this is absolutely typical. This is what happens to people when they are no longer able to take care of themselves. What we learned today is that saving for retirement is basically a joke unless you’re in good health and plan to stay that way long after you stop working. Don’t even get me started on how expensive and completely unhelpful our asshole lawyers have been.
Today was already an emotional day for us, being the anniversary of her surgery, without being forced to go up to a nursing home and sign over a check for thousands of dollars, then visit our mom and say “you’re being moved tomorrow! Aren’t you so glad you’re getting out of the hospital?” knowing that she is not very accepting of change. My mom and I definitely share that trait.
So begins a new chapter. No more gown and gloves to visit her, she won’t be in isolation. She won’t have a respiratory therapist making sure she’s not backsliding off the ventilator. No infectious diseases doctor or dedicated wound care nurse. Let the chips fall where they may, so to speak. We’re literally rolling the dice and have no other choice in her care at this point. It’s a nice enough place, it’s not depressing. The staff is friendly and seems very helpful and knowledgeable. But it is a lower level of care. I just don’t feel prepared to deal with all this. I don’t think I ever would have been prepared. She is literally living her worst nightmare and I am absolutely powerless to do anything to help her recover from it. She told me once that it was like Groundhog Day, I’m guessing since every day runs together exactly the same as the one before. I couldn’t imagine being in her position, and not giving up hope. That is all we have to cling to sometimes.
I’ve learned so many lessons from this, which is maybe another note for another time. It’s been a long day and I’m tired. I started writing this before I left to pick up my sister, and finished after I got home. I just want to end this note by saying thank you to everyone who has lent an ear, or a shoulder to cry on when I’ve needed to vent, those who contributed to the fundraiser way back when we had no way to pay for our mom’s insurance, all those who helped us move her apartment into storage, anyone who has given us advice or shared their experience with similar situations that we might glean some insight from it, and my amazing, supportive, wonderful husband who has endured every one of my mood swings, random breakdowns, and uncalled for attitude towards him. I don’t know how he does it, but he has been holding me together.
I am, above all, incredibly grateful to my sister. No one could possibly understand what either one of us is going through except the other. As I have been saying for a year, if there is any silver lining to all of this, it’s that her and I are close again after being somewhat distant from each other for years. She’s is an amazing, strong human being and I admire her so much, as I always have. I know my mom continues to be proud of us, even if she isn’t able to say it out loud.