Arlene and I met at work on June 17,1980 (my mother's birthday). We became friends and 3 years later, we became US (on my birthday). She left someone for me, I never understood why.
She was type 2 diabetic and was diagnosed in 2006. She would never go to the doctor and two years later her toe got infected and she missed 5 months work and lost her pinky toe and part of her metatarsal on her right foot. That should have been a huge warning shot. She still wouldn't go to the doctor.
Her walking got worse and worse, i lost my job and couldn't find work and at the end of 2010, beginning of 2011, she took a couple of flops and both knees blew up. STILL wouldn't go to the doctor. We argued, fought, screamed, and she wouldn't go. In the meantime, her and her sister started fighting and they didnt speak for almost 3 years. Her walking got worse and worse, and then Superstorm Sandy hit. We spent 2 weeks without electric and heat. A week in, I had to lift her legs to so she could sleep on the couch or bed.
She went back to work, and I had to get a rental car and drove her back and forth to Manhattan. In the beginning of December, we got to her job and she finally consented to go to the hospital. We found out that her kidneys failed, she was end stage renal and had to become a dialysis patent. On Christmas eve day 2012, she went into cardiac arrest while on dialysis and her heart stopped for 10 minutes.
A week later they told us that she had to have a triple bypass or she wouldnt last 2 1/2 years. She went into rehab till the middle of May and then came home. While she was in rehab, she was having trouble walking, and I noticed little bumps on her legs. Her docttor, though it took a while, told us that it was a condition called calcafilaxys. Basically its a side effect of dialysis where the arteries get calcilfied and it also forms carlcium deposits in the skin and once they break thru...there is no cure for it. And part of it comes from too much phosphorous in food. Also during this time period, one of her blood tests came back suggesting that she might have lukemia. She got tested, on June 17, our anniversary and my mom's birthday, in the hospital where my mother died, from a brain tumor when I was 12. Thankfully the tests came out negative.
Neither of us knew it then, but another bomb was about to hit. I had started scratching and thought that the rashes were just from all the stress. It turned out that the house was infested with bedbugs. Just after 4th of July of 2013, we had to get out of the house, we tried sleeping in the car, went from hotel to hotel, but Arlene never slept our house again, and would only enter it a handful of times after that.
As I said, we were displaced, and for about 3 weeks, we didn't know where were going to sleep from one night to the next. Then Arlene's crazy friend put her back in touch with her sister, whom she had not talked to for almost 3 years. So we went there.
While all this was happening, 90% of the furniture had to be thrown out, walls painted, and we needed new furniture. Oh yeah, I was still out of work. She also had to go to dialysis 3 days a week. The progress was slow, stressful and at times very frustrating.
Just before Thanksgiving 2013, she was having a bit of a panic attack as we were going to dialysis, and getting out of the car, I was trying to help her out of the car. At that point she got aggitated, shoo'd me away and fell and twisted her right ankle. This set off a chain of events where the foot got gangerous.
In April of the next year, she had her heart surgery. They were supposed to do a triple bypass, but because of all the calcification in the arteries, they could only do a single and a valve repair. They also told us that her carodid artery was 85% blocked. I was really concerned with that. They told me she'd be ok as long as she did her meds. She went back to rehab (different not than the 1st one) for 2 months and came out in the middle of June of 2014.
At the tail end of her stay in rehab, she started to be in more and more pain from the foot. It didnt take much to set it off. Screaming, cursing, carrying on. She was suffering.
About two months after we went back to her sister's, I noticed a black spot on the bottom of a toe on her other foot. it was the beginning of the other one getting gang green too.
During all this I was trying to do her wound care, which scared me since I'm not a medical person. I had also gone back to work at that point. So during this period, I was waking, going home to shower get dressed and check on our house, then go back to her sister's to make her breakfast, help her wash and get dressed. Then depending on if it was a dialysis day or not, I would set her up with lunch and snacks, some tea or cold drinks in a cooler, and set up her meds for her. I would then leave for work just after 11 and get back till around midnight. That was the routine. If it was a dialysis day, I would have to help her get downstairs. This was tough and got even tougher once it started getting closer to fall.
During the summer, Arlene became more and more immobile. She spent all of her time in a big leather recliner in her sister's livingroom. If she had to use the bathroom, we had to turn it around and push it as close as we could to the bathroom and then help her use the walker to help her get in. When she left the rehab, her sister had a stair lift put in to get her in the house. On dialysis days, I would push the chair to the edge of the stairs and help her change pants, then help her transfer. It was very tough because she couldn't weightbare. It was also extremely painful for her. The pain had gotten out of control and meds weren't working. Then I would help her transfer, It was only about 3 feet but it might as well been miles. She would operate the chair and get it downstairs, I'd squeeze thru and help her transfer again. This would take some time because of all the pain she was in. Then I would have to leave her at the front door with her dialysis bag which usually had lunch that I made for her and go to work. Most dialysis days, she could be there for a couple of hours till the ambulette picked her up.
In November of 2014, Arlene went back to the hospital to have the right leg amputated below the knee. a day later she started getting lethargic and the next day it got worse, and at first they thought it was a stoke, but then they realized it was another heart attack caused by sepsis. Back to ICU.
They did tests and told us that the heart didn't get any worse, but that it would never get any better.
Back to the rehab, this time they gave us so much trouble with insurance and proving financials, I thought I was going to wind up in the bed next to her. Debbie eventually talked them into taking her and she was accepted in the middle of December '14.
She loved this rehab facility, not so much her p/t and a/t people. They worked her hard and her fingers on the dialysis arm were getting necrotic along with the other foot. Almost constant pain and frustration.
At the end of January, she had to go back to the hospital for more tests, this time the rehab would not take her back because of insurance reasons, I still think they screwed up the paper work.
Debbie and I had to scramble, She found a place, it wasn't a convenient location, but it had really good p/t and o/t and she was on the same floor as those departments. The other residents in that place, other than on her floor, most of them didn't know what planet they were on.
And thats when we met Kenny. Kenny, was a great guy, who had been there for several months and lost both legs. He didnt run away from it and if he had long pants on, you would't have known he was a double amputee. He'd just bebop thru the hallways and has this great upbeat personality. He is also highly creative and best of all, he's a foodie like Arlene. He was a God send for her in that place and she never would have survived without him and for that I will be eternally grateful to him and will always be proud to call him my friend.
She started her therapy there, went to dialysis and as in the last rehab, anytime she had to get out of bed, she had to be hoyer lifted into the wheelchair.This was extremly painful for her. Also, because she couldnt weight bare, she had to go to dialysis on a stretcher. This was very painful on her back and she screamed alot when they did it because she was in so much pain.
She spent her last 3 birthdays in one rehab or another. We did the best we could for in rehabs, she always had company on weekends, we always had people come to see her for holidays. There were times when it seemed we were taking over the day rooms
This is where it gets painful..er. On Monday, June 1st, i went to the rehab to help her get dressed and ready for dialysis. she was lethargic, had trouble making bowl movements and said she couldn't go (it happened from time to time). I stayed with her as long as I could, layed out her clothes, prepared her bag in case she changed her mind after I left. As I left, I told the nurses at the desk the situation and asked them to keep a closer eye on her than usual. Debbie called me that night and I told her that she didn't go and she let loose on me. I didn't react, it was a stressful situation.
The next morning, June 2nd, Debbie called at 7am, they couldn't talk because of a bad cell connection but said she sounded fine. At 8:15, the nurse looked in to tell her she was there and she'd be back to do wound care on her foot. Five minutes later, her aid looked in and found her slouched back and unresponsive. Five minutes later, at 8:25, I walked into the place and went to the elevator with an EMS person who said to the receptionist that there was a person on Arlene's floor that needed aid. Thats when I got nerveous.
It got real when I got off the elevator. I was greated by an aid who told me that it was her and not to go to the room. I just lost it, I watched EMS person after EMS person go down the hall. There had to be about 6 strechers in that hallway. I Called Debbie, her doctor and my sister Eileen to tell them what happened and to meet us at the hospital. Then I fought with them to let me ride in the ambulence, I lost that fight and followed in my car and met Debbie, her doctor and my sister in the ER.
They told us that she went into cardiac arrest (again) and two days later confirmed that she had a stroke. She was also in a coma. Her doctor, Dr. Blush came and then told us that he was really sorry but that he had to go to Israel for a family function the next day and couldn't get out of it. This had no bearing on anything that happened after, he's a wonderful doctor and had been our rock from the moment she first entered the hospital in December of 2012. We slept there that night, actually, I slept there every night. The next day, they called us out into the hallway and told us that the heart attack was caused by sepsis poisoning (again?!) and that if she didn't have the other leg amputated below the knee, that she would likely not survive. They also told us that they might have to amputate further, above the knee. I looked at Debbie and she said "well she knows it was going to have to be taken anyway" she had a pained look on her face, as did I signing the papers, which up to that point, was the toughest thing I had to do. My sister Maureen had come with Bill her husband to see her just before that (their wedding anniversary and also the day that Arlene met members of my family for the first time). I had just signed the papers and we were talking and we saw them take her down to the OR and said "there goes Arlene" with her leg dangling off the bed just as she had had it all that time in the rehabs and at Debbie's. It was as if, in a coma, she was able to know to do that because of the pain. They came back about a forty-five minutes later. They took the leg guillotine style.
During this time, I would go in and stand by her or sit in by the bed, she would either have her eyes closed or just stare straight ahead with no reaction. We had the TV on her favorite channels (Food Network or HGTV). I could only stay in the room for more about 15 minutes at a time, it was just too difficult. There was one time that i was standing there talking to her and I SWEAR it looked like the eyes moved slightly toward me. I will go to my grave believing that she was trying to look at me and wanted to tell me something. I believe that to my soul.
That Friday, Debbie and I decided to go back to work. I would stay till 11am, check with them in the ICU, then go home, shower and change quickly, and go to work. Debbie would go to work, come to the hospital, and then stay till I returned around 11. There would only be a five hour window when nobody was there.
While we were there, there was an Albanian Muslim family also standing by for their son, who was in the room next to Arlene. I think half of Albania must have been in the waiting room at several points during all this. The mother at times would pray. At one point, I asked her to put in a good word for Arlene. After I did this came to the thought that this might have been one of the few times that a Catholic, asked a Muslim, to pray for a Jew.
During the weekend, Arlene had a string of visitors. Monday came and while I was in transit they called to ask about putting a feeding tube in. I told them that they should at least discuss this kind of thing while I was at the hospital since I was there till almost 11. The next day the same thing happened, while i was on the bus to work they called me to talk about taking the leg above the knee. I told them to talk to me face to face the next morning. They never told me that it had to be that day and they didn't have a sense of urgency for it, they just said that they were of the opinion that it needed to go because they didn't like the way the amputation looked. I informed Debbie of all this information as it came in.
June 10th. I left as usual to go to work at 11, took the bus into the city and was just rounding the corner at 42nd and 8th to go the place where I would go, sit down and unwind with a cup of coffee and a bagel when I got a call from the hospital saying that she coded again and did I want them to do CPR, I said "YES!!!!" and ran for a cab to try to get back. I had trouble getting one, one guy didn't want to take me so I started cursing and screaming at him. I finally got one and started making phone calls, first her sister, then work, then my sisters and my brother.
I was about 10 minutes from the hospital when her sister called me and said that she was back and still alive. I got to the waiting room, dropped my bag with her sister and went into the room. She wasn't breathing great. I stood there for 5-15 minutes, begging her to come back to me and not leave me, then went back to the waiting room so her sister could come in again. She came out 5 minutes later and said that she didn't like the way she was breathing. As soon as she came and sat down, they came out and said that Arlene coded again and should they do CPR. I said yes. Then they came out again and asked, and again, and again. I said yes each time. And then they came out again and I looked at her sister and said "well?" and she said "its my sister". So i told them to keep trying. Even had she said no, I would have told them to keep trying. Finally, they called us out into the hall and said that they did all they could. So I asked "Is she sill with us?" and they said "No, she passed at 3:55 pm." So I asked if we could go in and see her, they said yes, but they had to clean her up first.
We went in, were emotional, and as he always did when things were at their worst, her doctor called me from Israel to see how things were. I told him, we spoke, he spoke to her sister, then hung up. We said our goodbyes, I was the last one out of the room, kissed her, thanked her for loving me, and left the room.
For 2 1/2 years I got calls for Arlene on my cell asking for her so they could try to sell her diabetic testing supplies. And until six months ago, I would scream and curse at them (ok, it was fun and thereaputic, but clearly ineffective). So tonight at work, I got another one of those calls, at work and gave what is now my standard response:
Them: Hello, may I speak to Arlene?
Me: She's not here, but I can give you the number where she may be reached.