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Don's Friends

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Don's Page

Latest Activity

Don replied to Soaring Spirits's discussion What is the most insensitive thing someone has said to you about your loss?
"When her sister told me I was an enabler. Not coming back at her took a LOT of self control."
Jan 10
Don posted an album

My Tree

I bought a small prelit predecorated tree for my 1st Christmas afterArlene passed. I bought an ornament from every trip I've taken to add to it. The top is Arlene's Christmas hat from her last Christmas.
Dec 25, 2017
Don posted photos
Dec 25, 2017
Don commented on MidnightBear (Tony)'s blog post I am not broken, You can not fix me
"Tony,  I do a lot of the same things, the banter with a ghost especially, and the eating in front of the tv. Sometimes i'll see something and look at where she would have been sitting and make a comment to her (does this mean I've…"
Dec 11, 2017
goingon (Cynthia) replied to Don's discussion With the holidays upon us... in the group Long-Term Illness
"Don -  I wish I had some infinite wisdom on how to answer these comments; maybe you don't answer.  Maybe you just nod and try to smile and walk away.  We know these comments don't help at all, but I think people just…"
Nov 18, 2017
Beansy replied to Don's discussion With the holidays upon us... in the group Long-Term Illness
"You will never fotget it, you will always feel her there, you will miss her, you never get over this loss. I am 20 years since my husband died, and I know. It gets easier, it eventually feels good to realize you once were with the other person and…"
Nov 17, 2017
Riley replied to Don's discussion With the holidays upon us... in the group Long-Term Illness
"Nobody knows what to say to us.  I know its not fair, but if people do say something like what you listed above, it makes me mad. It also makes me mad that people and family pretend my husband didn't die.  Life goes on for them same…"
Nov 17, 2017
Don added a discussion to the group Long-Term Illness

With the holidays upon us...

How do I answer the comments that haven't come when I talk about the things that happened to Arlene around two holidays? She had her first heart attack on Christmas eve day 2012 on dialysis as we were trying to come back from Hurricane Sandy and the 2nd just before Thanksgiving 2 days after the amputated her right leg. I am going to try not to mention those two events during the holiday get togethers but they might slip out. I am just waiting for....drumroll please..."Don't think about…See More
Nov 17, 2017
SweetMelissa2007 commented on Don's blog post How to handle telemarketers
"Its been 10 years since Bob was killed in a company vehicle - I still receive at least two reminder calls a year for a medical check-up/drug test & to register for a recertification training class plus several pieces of mail for honorary dinner…"
Oct 14, 2017
Callie2 commented on Don's blog post How to handle telemarketers
"Good one, Don! However, don't count on them giving up, some continue no matter what. I hope it stops for you!"
Oct 13, 2017
vintage56(barb) commented on Don's blog post How to handle telemarketers
"I love it Don!!"
Oct 13, 2017
Don posted a blog post

How to handle telemarketers

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.Them: Ok sir.Me:Ok, the number where she is…See More
Oct 12, 2017
Don replied to Soaring Spirits's discussion US: MID-ATLANTIC in the group Connect with others in your area
"Hi nitebird, I'm on Staten Island as well"
Sep 26, 2017
Fluffycat52 commented on Don's photo


"That is a very nice picture of you Don have a nice rest of your weekend. Your Friend, Lisa"
Sep 23, 2017
Don commented on mls64 (Mike)'s blog post Role reversal,
"Sell the house, get what you want, go and visit Hawaii and New Orleans for me and find 2 twenty year olds. And oh yeah, Live a good long life, do things and don't be in a hurry to join me."
Sep 21, 2017
Don replied to Surreal17's discussion How do you process your anger/disappointment at people who didn't "show up" for you and your spouse? in the group Long-Term Illness
"Oh where oh where do I begin? Lets just say that Arlene was REALLY good so these people and REALLY extended herself for them. Not one person that was currently working at the job that she was working at showed up at her funeral and she always went…"
Sep 8, 2017

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She was sick for a long time, and VERY sick for her last 2 1/2 years. She passed 7 days short of us knowing each other for 35 years and 3 weeks short of us being together for 32. There are times when this is more than I can bear.

What happened

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 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.

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Don's Blog

How to handle telemarketers

Posted on October 12, 2017 at 2:20pm 3 Comments

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.

Them: Ok…


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At 6:39pm on May 2, 2017, hizangel (Patti) said…

Hi Don, just saw your friend request :)  

At 11:09am on December 22, 2015, Dianne in Nevada said…

Welcome to Widville, Don. I'm so very sorry for your loss, but pleased that you found us. You'll find caring support and friendship here.

Here's the best place to start: Need help using the site? Ask here!  You can join the Groups that fit you to connect to others with similar experiences. Share your story. Take a look at our Forum discussions where you'll find meaningful conversations taking place. Be sure to check out the HOME page for the latest news.  I look forward to getting to know you here in Widville.


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