We had been through this before. Sort of...
At the end of August 2011, we were getting prepared for Hurricane Irene.
I care for my wife Valerie, who has Alzheimer's Disease and is bedridden. Her ability to speak is very limited, so I look at her body language, especially facial expressions to try and understand how she is feeling. When the weather is sunny and bright, it is a challenge to care for her. Routine is the only stabilizing force in caring for my wonderful wife. When routine breaks down, for whatever reason, there is a cost that is paid, usually by my wife. I had gotten my wife on Medicaid in 2011 and she had Home Care aids 12 hours a day, 7 days a week for over a year now. They are the lifeblood in keeping the routine stable.
The weather forecasters and news commentators love a good story, a scary story, a story that has blood. That is usually the headline. But many of us here in the New York City area, are well aware of the many times everything but frogs and locusts were forecast to rain down on us. Last years storm was bad, but not as apocalyptic as Hurricane Sandy turned out to be. So we all thought they were crying wolf again. Not this time.
Well, it wasn't just one wolf, it was a pack of atmospheric wolves that came at us on Monday, October 29th, 2012. The perfect storm is more powerful than any enemy you can imagine.
At about 7:15pm Monday evening, one of the wolves ate the lights! Power was out. I was in the bathroom. Perfect timing I thought. I looked out the window and saw what looked like lighting. It wasn't lightning , the "lightning" I saw was from transformers exploding and lighting up the sky with the most surreal light I had ever seen. The wolves were feeding on everyone's lights and power.
I went into the living room where my wife was in her hospital bed and turned on the battery-powered lanterns I had set up in the living room and one on the dinning room table. I turned on the batter-powered, hand-cranked radio to listen to what was going on in our now darken, scary, windy bloodied world. This was the big one. Our cats, Sam and Dave took cover under the bed. They don't like tempests. I don't blame them.
I had supplies to last 48 to 72 hours. I had water, Ensure, fruit, peanut butter, milk, bread, turkey slices, cheese and juice. Food for Sam and Dave. I had a survival kit with a first aid kit, water, food, Mylar blankets (keeps in 90% of your body heat), the kit even had a whistle. I had a small, but very strong flashlight in my pocket. I had all these things since last year preparing for the storm that wasn't as bad. I had put water in sandwich bags and put them in the freezer. When the power went out, I put them in the fridge so that it would stay cold for awhile. Living through the blackout of 2003, I thought we'd be with out power for no more than 12 to 24 hours. I was wrong. Very wrong. We all were.
The Home Care aid did not come Monday. The home care agency called to let me know. That was the last time I had heard from the Home care agency. So, we were on our own.
That night I put on some music as I always do for my wife and got ready to give her a sponge bath after she had some dinner. The hospital bed and the air pressure mattress were not working without power. The hospital did have two, manual cranks to adjust the hospital bed so I was going to have to use them. Even with the two lanterns, it was still dark, so I used a flashlight under the bed so I could fit the cranks into the grooves to adjust the bed. I was doing all of this, and trying to stay calm, and keep my wife calm as winds approaching 60 to maybe 80 mph, were engulfing our home. I heard things being tossed around the house. I thought for sure many branches were coming down off the trees and god knows what else. I stayed next to my wife the whole night, with a very large comforter at the head of the bed to throw over her if any windows broke and glass shards became airborne. My wife did not know exactly what was going on, but she did know something was going on and she seemed very agitated, talking in monosyllabic, and unintelligible phrases. I knew exactly what she was saying and feeling. Nothing was helping her stay calm, so I started to sing to her. I sang "You Are My Sunshine" and she got very very quiet, almost completely calm. I sang it to her all night. It was the only thing that was helping her stay calm. Routine had taken a powder and this was the new routine. You have to adapt to survive. I counted the number and length of each of the scary bloody wind gusts. 15 to 20 gusts an hour, lasting 15 to 25 seconds. Although concerned, I wasn't scared. My wife was. This went on until the wee hours. At about 5 am, the gusts had died down and my wife was sleeping on and off. I got no sleep and would not get much more over the next 3 days. I took a look out of the window just after dawn and what I saw was a mess, but not to the degree of mess I was hearing about on the radio in other parts of NYC.
Surprisingly, our aid came Tuesday morning to help me. It was a miracle that she showed up. God bless her for caring and making the effort. She stayed until 1pm and had to get back home to her family. I could not get anyone on the phone. Cellular phone service was sporadic at best. I was able to text my wife's family and they were able to drop off some food and supplies since their power had come back on for them. I was in contact with my step-daughter who was sending friends over to give us any assistance we needed. A few of my friends came over to drop off some supplies and support as well.
I was calling ConED every few hours to see if they could give me any sort of update. They couldn't. I told them of the situation.
I said "If you were in a rescue helicopter in the North Atlantic and you found a lifeboat with 12 people who had life preservers on and baby was in the water with no life preserver, who would you try to save first? The guy on the phone understood what I was saying, but that ConED was not prepared to take on anything like this.
So now, Tuesday became Wednesday and still no update from ConED as to when power was going to be restored. We were quite literally on our own. When you are a caregiver for someone like my wife, the type of help needed is more than most people are aware of. It's not their fault, they won't know until they do it themselves. I started to think about rationing the food and water we had, since I wasn't sure how long this crisis was going to last. This was war and I didn't have basic training so I could only rely on what was left of my tattered wits.
Since the house was getting too cold for my wife to stay in the house any longer, on Thursday morning I called 911 to get her out. ConEd still could not give me an estimate as to when power was being restored. And from what I was hearing on the radio, things were bad, very bad. Worse than anyone had thought or prepared for.
We ended up at the ER at Richmond University Medical Center on Bard Ave. It was warm. Thankfully again, our aid came Thursday morning to help us out. The social worker who was working in the ER, got us a room at a facility later that day as beds were scarce.
I had left my porch light on when we left for the ER. I had asked my brother-in-law Bill to drive by the house when he could, to see if the light was on. I got a call later that day that he had driven to our house and saw that the light was on. That meant that we had power. Taking my wife out of the house I knew would be difficult, but I knew I had no other good alternatives. Anyone who cares for someone with Alzheimer's knows that any break in the routine, any hospital stays, or long hours waiting in an ER, has a negative effect on them. Most people in the Health Care System, do not know that. They should. Nor do they have any expertise in caring for a person with Alzheimer's Disease. We caregivers do know that, and no matter how many times we try to explain that, we get the puzzled look on the faces of health care professionals.
So, after I spoke with my brother-in law, I went home and the power was in fact on. I called the facility and spoke to the supervisor and she coordinated getting an ambullette to take my wife back home. I asked my family to call a plumber to check the stove and gas line. I wasn't taking any chances. I may have been overreacting, but given the circumstances I didn't care, and wanted to make sure we weren't going to have another scary problem to deal with when we got home.
What I saw while driving between the facility and our home was alarming. Cars waiting to get gas in long lines, traffic snarled, tempers on edge, a gloomy sky, and the threat of power lines and trees falling around me got my attention, so even driving was perilous. But I couldn't dwell on that, I had a job to do and that was to make sure my wife got back to her routine as soon as was humanly possible. No easy feat.
We got home to a warm and lit house. The one guy in the ambulette said, "Don't beat yourself up, you did the right thing getting her out today, even though the power came back on several hours after you left. You could not have known that. None of us could." I have to say that all crews who helped us that day, were nothing short of phenomenal.
I knew that it wasn't just the storm we were going to have to deal with, but the aftermath. It seems we are all pretty good during a short term crisis, but in a long term crisis, not so much. I had to prepare for the aftermath. We all do.
When everyone is in a foxhole, trying to stay alive, you have no alternative but to fend for yourself if you can, because they probably can't come to your aid. But how do you prepare for something like a Perfect Storm when you are caring for someone who cannot run and fend for themselves?
One plan I would like to see put in place as soon as possible, here on Staten Island and in all of New York City, is a plan to evacuate anyone who is home-bound and whose mobility is non-existent. So that, during a storm of such a powerful and destructive force as Hurricane Sandy, doesn't destroy our collective ability to care for the most vulnerable of our citizens. I'm not crying wolf.
