After the Stroke: 9 Days with David
David Post Stroke: April 2013
At some point on April 9th through a series of frantic phone calls, constant emails, and urgent text messages where I tried to convince my sister (David’s health surrogate) to stop institutionalizing David and to bring him to my apartment in New York — she heard me.
Without wanting to break the momentum of finally speaking to each other and being on the same page, I followed her instructions:
“Get him an airline ticket for tomorrow on the same flight that I’m on. Let them know he is disabled and needs first row because he cannot walk down the aisle. He’s in a wheelchair and needs an aisle seat.”
After repeating the exact words to a supervisor at Jet Blue, I then called a car service and arranged for a car and driver to pick them up at JFK so that it would be easier to transport David safely to my apartment on the Upper West Side of Manhattan.
At approximately 3:30pm on Wednesday afternoon, I received a text from my sister stating that they boarded the plane and were on their way to New York.
David, she told me, was happy and excited. This was his first outing since the devastating stroke in December and it was also the first time in a long while that he found himself in a somewhat normal situation. And that’s exactly what I felt he needed: some normal. To be in my cramped one bedroom apartment because even that, with me, loving him and tending to him — it had to be a thousand times better than the nursing home where he had been systematically neglected.
By the time they landed at 6:35pm I had already made multiple trips to the medical supply store and the supermarket and had single-handedly moved my furniture out of the way so that it would accommodate the wheelchair (which coincidentally was the same chair I purchased for him a couple of months earlier in March when I tried unsuccessfully to take him out of the nursing home).
I am not a domestic type of woman. This has never been my forte. But somehow, unexplainably, I became June Clever overnight because by the time the car stopped in front of my building, I somehow managed to have dinner on the stove and there wasn’t a speck of dust anywhere in my apartment.
A light rain started to fall as I ran down the front stairs of my building and toward the car where David was seated. It was a magical moment. He smiled and reached out for me. My heart ached with happiness.
My neighbor Robert accompanied me since we needed two men to help get David and the wheelchair up the six steep steps into my apartment building. The goal was to have the driver and Robert somehow carry David up the stairs to the lobby, put him back into his wheelchair, and then on the elevator.
This took about 15 minutes. It was utter chaos. My sister insisted they put David into his wheelchair and carry both up the stairs. Both Robert and I believed it would be easier to carry him up first without the wheelchair and then put him back into it once we were in the building.
Leave it to David to settle the dispute because as soon as the men wrapped their arms around him he reached up and grabbed the rail. He was going up without the wheelchair and although he couldn’t raise his left foot or his left arm to brace himself, between the three of them, David made it upstairs.
My bedroom became David’s room and once I got him washed, fed, and settled in, it was time to learn how to give him his meds. My sister, who is a nurse by training, taught me how to inject him with the insulin he needs because in addition to everything else, he is now a diabetic.
By the time she left I was exhausted. I tiptoed into David’s room to make sure he was okay. He was still awake so I sat next to him and kissed him on the forehead.
“Thank you for everything. I’m so happy and grateful. Thank you,” he said.
I could barely contain my tears.
“There’s no need to thank me, sweet face. I love that you’re here. I’m going to do my best to take care of you. I promise. I love you.” From the time of his stroke I was aware that I spoke to him as if he were a child. He somehow lost the grown man he had once been and became the sweet little boy he’d been decades earlier. And from out of nowhere the phrase “sweet face” had surfaced. But it was what I saw when I looked at him.
He grabbed my hand. “I love you too, Kirby.”
As I dropped onto the sofa that first night and waited for sleep I could hear David breathing. He doesn’t snore. That surprised me. Even with all the weight he’s lost, he’s still a big guy. I fell asleep listening to David’s even and steady breathing and was ever so grateful that he was just in the other room and not 1,000 miles away in a nursing home.
The next morning for a brief second I wondered if I had dreamt the whole thing. But, then I glanced across the room and saw David’s wheelchair by my bed and a sense of blissful calm flooded over me. He was here. He was safe.
“Did you have a good night’s sleep, sweet face?” I ask as I walk into the bedroom.
“Yeah, it was the best sleep of my entire life. At Colonial Lakes the people that work there talk all night long and I was always afraid of who was going to come into my room.” He enunciates each word slowly and carefully and in many ways he sounds more like a child than the 52 year old man he is. Gone are the curse words that used to be part of his everyday vocabulary. Of the stroke, this is the only thing I can think of that has been on the positive side. He is now exactly how he used to be when he was a little boy — very sweet.
And suddenly the realization that he hadn’t had any privacy since December or perhaps even had a single night of sound sleep hit me. It startled me really, since nursing homes are full of people who need their rest.
“Well, you’re no longer at Colonial Lakes, you’re here and you’re free,” I assured him as I sat next to him in bed.
“No more Colonial Lakes,” he repeated. “No more. I’m free. I’m free.”
Every morning after that first one I would try to sneak into the bathroom which is right next to the bedroom without waking him. But he was always awake, his beautiful brown eyes would meet mine and he’d smile broadly and in a happy sing-song voice he’d say: “Kirby, Kirby,” followed by “fun, fun, fun.”
As wonderful as it was to care for him, it was a lot more difficult than I ever imagined. From the moment I opened my eyes in the morning until I went to sleep at night, it was go, go go.
There was a lot of stuff involved that I wasn’t accustomed to, like having to do the laundry and the dishes every single day. Add to this the fact that it was physically challenging because I’m just shy of 5’3 and weigh about 120 lbs and he’s still about 200 lbs. So that pulling him into an upright position in order to get him out of bed and into his wheelchair was not easy. In 9 days, I lost 4 lbs.
And because now that he was in a home environment with me, who would do anything for him, he always wanted to either get back in bed or get out of bed, and this went on all day long. But pulling him up in order that he could sit before transferring him into the wheelchair also necessitated that I put his sneakers on because he needed to be able to stand firmly on the floor or he’d risk falling.
We fell into a routine pretty quickly. For example each and every time I put his sneakers on he’d say in a deep Elvis-like voice: “Thank you very much.”
So I’d retort with: “Elvis is in the building.”
And then we’d both start laughing. It was a silly thing, but it oddly never got old. We’d play this little scenario all the time and it was always funny.
In the middle of one long, exhausting day, after I’d already put on and taken off his sneakers about half a dozen times, he wanted to get up again. So, I’m sitting on the floor struggling to get his sneakers back on and I’m saying: “I hate your sneakers, I hate your sneakers, I love you, and Elvis is in the building…” and he’s giggling and I push myself up off the floor and grab him around his waist to help him up but he’s laughing uncontrollably and he’s not moving.
“What’s so funny?” I’m hoping he’s not going to say he wants to stay in bed. So I loosen my grip on him and stand up to stretch my back that’s killing me.
“You put them on wrong,” he tells me between bursts of laughter.
Like seriously?
So I look and I did. The right one was on the left foot and the left one was on the right foot. And so I plop down on the floor again and pull them off again and put them on…again.
“You know,” he tells me in a more serious tone of voice. “I never thought you were funny before. But, you’re so funny.” And off he went on his new “fun, fun, fun” song that he’d sing during the nine days he lived with me.
Cooking was something I did only once. On the second morning I made him a western omelet — which he insisted he wanted while he was en route to my apartment. So according to his instructions I had the bell pepper, the onion and the eggs in the refrigerator. After the slicing, the dicing, the cooking, and the cleaning — I ordered every other meal in. He loved it.
Although he was on a special diet because of his diabetes, he was happy to be a New Yorker and happy to be able to place an order for whatever he wanted and have it delivered in less than 20 minutes.
On April 18th I received an email from my sister stating I should have David packed, fed and put into an ambulette service she was sending by 1pm the next day. Not wanting to spoil the day for David who kept saying: “I got no complaints. I’m happy here” — I decided to wait until after he had his breakfast the next day to break the news.
As I packed his things, fed him and dressed him, it was difficult not to break down. I really had to keep it together so he wouldn’t lose it. It was my understanding that he was to spend a weekend with my sister and then be transferred to a rehabilitation center in upstate New York.
After I put him in his wheelchair I left him in the apartment while I ran downstairs to take his bags to the truck. And once I saw them lowering the hydraulic lift my heart sank. This was really happening. David was leaving.
Everything else happened too quickly. One of the men went back upstairs with me to get David. Someone asked me if I had a seat belt for him. I shook my head. I was crying. David was already in the back of the truck and I pushed my way in to hug him and tell him how much I loved him. We were both crying and hugging each other.
The driver who was the older of the two instructed his assistant to leave us alone for as long as we needed. I had a terrible sense in the pit of my stomach that I’d never see David again. And, then, I looked up and I saw a sliver of Central Park. I felt so bad that we never even had a chance to go to Central Park.
I asked the driver to give me the address to where he was going. The address didn’t match my sister’s address. So I told him to write it down for me.
David tried to calm me down. I can’t even believe this happened. He said: “It’s okay, I’m going to see a doctor.” For whatever her reasons, my sister didn’t bother to tell me where he was going.
David spent the rest of the day at a hospital where my sister tried to have him admitted. Due to the fact that I had taken such good care of him, he was released back to her at 10pm that night, after a battery of unneeded exams.
The physical therapy place never materialized.
On Monday his mother flew into New York where she picked David up and took him back to Florida.
It took about one week for me to put the things that I used to care for him away.
Although David asked repeatedly to come back to live with me, his requests have never been honored.
The nine days he spent in my apartment were the nine most fulfilling days of my life.
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2013–2016 Copyright Kirby Sommers