Surviving the Storms of Life: Caring For A Dying Friend

In my last post about the “Hatfields & McCoys: White Lightning” reality show, I mentioned that I was absent from the blog for a while due to the death of a close friend.  After receiving a very kind comment from a lady by the name of Susan, I thought it may be helpful to someone out there if I explain what happened.

My husband is originally from the mountains of Virginia (then later the mountains of North Carolina, near the Virginia border) and he had a dear friend there who I’ll call K, who was originally from West Virginia.  K eventually ended up back here, along with my husband; my husband and I met shortly thereafter.  K worked for my husband for many years, in his construction business.  They spent lots of time together outside of work as well, and they and their wives at that time (both ladies are now sadly deceased) even took vacations together.  They were best friends for over 30 years, so K was family to us.

Last year, K became very sick with lung cancer, though he was only about 50 years old.  This was his second round with the disease, and this time, they removed his entire lung.  If you’ve never seen the scar from lung-removal surgery, it’s really horrendous.  It actually looks like a giant shark took a bite out of the person, from their neck to the bottom of their ribs, and curving down around to their side.  In fact, we referred to K’s surgery scar as his “shark bite”.

The first time he had surgery for his cancer, he had stayed with a “girlfriend” afterward (I use those quotes because she wasn’t a girlfriend in any conventional manner; as far as we could tell, she just used him because he would give her money).  That woman is nuttier than squirrel crap, though.  Her own daughter told us that her mother threw him out just days after his first surgery (which removed part of his lung), beating him with fists down three flights of steep stairs though he’d just gotten out of the hospital, all because he hadn’t taken a cup back into the kitchen.  Obviously, he couldn’t go back there.  Obviously.  And he wouldn’t be able to live alone either, because he was getting ready to start chemotherapy again (which nearly killed him by itself the first time).

While he was still in the hospital, we emptied out his apartment, brought his personal things here, and put the rest in storage.  We have extra bedrooms and extra bathrooms, so we had plenty of room for him, and obviously he would never in a million years be abused here, nor would we ever allow anyone else to do so.  As soon as he got out of the hospital, he came to live with us, and we took care of him until his death.

Now, K was a very interesting fella, and he was full of life.  Though he was undergoing chemotherapy and only had one lung, he was always up to do something, anything other than give up and lay in bed (though obviously, some days he was too weak to do anything but that).  We would not only care for his needs and take him to his many medical appointments (keeping proper track of his many medications was quite a feat in and of itself), but on days when he felt able to do so, we would also take him for some light four-wheeling, or target shooting, or fishing.  He would also spend a day or two at that “girlfriend’s” house from time to time, only because she had two grandchildren who he absolutely adored.  He never had any children of his own, you see, so he “adopted” her grandbabies, and loved them dearly.

We knew he didn’t have much time left, because by the time they removed his lung, his cancer was already at Stage IV.  He wanted so desperately to live for the sake of those children, though, that it broke my heart (and still does).  He wanted to see his grandbabies grow up, and it worried him that they were so young, they wouldn’t even remember him.

K asked us to take care of his grandbabies after he was gone, and we have kept that promise.  We buy them lots of presents for Christmas and birthdays, buy them new clothes when the seasons change (or they outgrow what they have), pay for dance lessons, babysit from time to time, and just generally help their mom as we can.  We even established a college fund for both of them, in K’s name.  We’re just very lucky that we can afford to help financially.  They’ve also “adopted” us as their grandma and grandpa, which is great because we love the kids too, and it always gives us an opportunity to bring up their “PawPaw” who’s in Heaven, so they won’t forget him.

Like anyone who’s that sick, there were some very bad days.  Several times he snapped at me in a very cruel manner, when all I did was ask him how he was feeling.  While it hurt my feelings pretty badly, I had to remind myself that he was dying at a fairly young age, and if I was dying, I probably wouldn’t be in a good mood either.

There were lots of days when I wondered if we did the right thing by bringing him here, because it caused a lot of stress for all of us.  He was a grown man reduced to needing help like an infant, which made him angry at himself, and we had an ongoing battle with him about him continuing to smoke cigarettes.  Sometimes we’d think, well, he’s already dying, so it can’t do anymore harm than it’s already done; most times, though, we’d think he’s just killing himself faster, because his surgery site wasn’t even healed yet, and he was inhaling hot smoke (and lots of carcinogens) into an area where a tumor was still growing, since they couldn’t get it all.  We bought him patches, gum, e-cigarettes (which have nicotine but are just vapor), the doctors prescribed him various medications to help him stop, all to no avail.  He was smoking more than a pack a day (my husband kept him on payroll though he was unable to work), and we were constantly worried about him smoking when he’d just had a lung removed.

Eventually we came to the conclusion that it was only causing a fight and that he wasn’t going to listen to us anyway, so we just gave up saying anything, though it still really bothered us to see him smoking like that when he was fighting lung cancer.  In the end, smoking so much after his surgery is what killed him, not the cancer itself.  He developed a fistula at the surgery site where his lung used to be, so whenever he breathed, the air was leaking out into his chest.  The doctors said it’s a known complication of lung removal, but more likely to occur in continuing smokers because the surgery site can’t heal properly.

Needless to say, I now second-guess myself, wondering what (if anything) I could have said to stop him from smoking.  Though my mind tells me he was going to smoke no matter what I said, since he was dying anyway and thought it didn’t matter at that point, my heart tells me there must have been something I could have said, which I never thought to say.  I still don’t know what I could have said to change his mind, but the idea haunts me.

At one point, due to his cruelty toward me, my husband suggested that maybe we needed to just rent him his own apartment nearby and he’d visit him there every day, staying when he needed to do so in order to spare me from getting my feelings hurt almost every day, but I refused to even consider it.  He couldn’t even take care of himself some days, and there was no way to predict when that would happen.  If he needed medical care and didn’t get it because we weren’t there with him, I knew I’d never forgive myself.  So I just decided that I needed to put my own feelings aside, and just deal with it.

There were plenty of good days with K too, though.  I remember one day he wanted to go to the shooting range, but he was far too weak to shoot any guns himself.  So we set him up on an inflatable mattress with a pillow, so he could watch and enjoy the day as much as possible.  At one point he started getting hit with expended shells, and I kind of freaked out since those shells are very hot, but he just laughed.  He laughed about the shells, then he laughed even more about me freaking out.  I guess it made him feel more alive, and it makes me smile as I write this, to remember that day.

Another day we went fishing on the riverbank, and I kept catching turtles instead of fish.  That was good for a lot of laughs too.  I’m just glad we already have a friend nicknamed Turtle, because otherwise I’m afraid that name would have stuck on me, hahaha.

In addition to fighting with him to get him to stop smoking, I constantly had to fight with his doctors to get him what he needed.  He was in incredible pain, but it was almost impossible to get him the painkillers he needed.  I can’t tell you how much time I spent fighting with doctors over that issue, always to be told that he didn’t need more than what he already had.  I was pretty dumbfounded, considering that the man was dying of cancer and therefore obviously needed strong painkillers.

Eventually, it came to light that his “girlfriend” was calling his doctors’ offices, claiming to be his wife and getting prescriptions for all kinds of painkillers, supposedly for him. Problem is, none of us even knew she was doing that, and he certainly never got any of the medication prescribed for him.  We found out about that when his doctor called in a prescription for pain medication during an appointment and, when we went to pick it up, they had three prescriptions for the same powerful painkiller from three different doctors.  I thought it had to be a mistake, but it wasn’t because the pharmacist had actually talked to those doctors.  The pharmacist was so sure it was us playing the system for painkillers, since we were the ones there to pick it up, he threatened to call the police.  I told him to please do that, because it definitely WASN’T us doing it.

K was actually going without pain medication, because that crazy woman was calling in for it, pretending she was his wife and saying he was in horrible pain (which he was, but she’d have no way of knowing that), without any of us knowing anything about it.  The doctors were stunned to realize he didn’t have a wife, and that I had never called to ask for painkillers for him.  They had just assumed I was his wife (and the woman calling on the phone), because I went to all his appointments with him.

So that was quite a mess to clean up.  I had to make sure all his doctors understood that he was not married, that he lived with us, and my husband and I (his medical powers of attorney as well as his caregivers) were the only people authorized to call for medication.  After that, in order to protect K, I had to actually drive all the way into town to the doctors’ offices, and show identification to get his prescriptions, so they’d know for a fact that it was me, and not that crazy drug addict getting them for herself.  I still to this day can’t believe anyone would take advantage of a dying man like that, especially one who’s supposed to be her “boyfriend”.  In case you’re wondering, nothing legally has been done to her for that scam, at least not yet.

He had an endless capacity for forgiveness, though, and he started visiting her when he was feeling better, so he could see his grandbabies.  When he had lived here for about eight months, he went to her apartment, and we didn’t hear from him for over a day.  We tried to call repeatedly, and there was no answer.  Worried, we went there to check on him.  We found him so sick that he couldn’t even hold his head up, and whenever he breathed, there was a sound coming from his chest best described as an animal growling.  He had been like that since shortly after he got there, we were told.  His “girlfriend” had refused to take him to the hospital, though it was just blocks away from her apartment, because she said she had to watch one of her grandchildren.  Of course, even if that was the issue, there was nothing stopping her from putting the baby in the car (there were carseats in K’s vehicle at all time) and dropping him off at the hospital, or calling 911 for an ambulance, or calling us so we could take him to the hospital, but she never did any of those things.  That is something I will never, ever understand.

My husband carried K down the stairs from her third-floor apartment, and we took him straight to the hospital.  He was immediately checked in, and they began doing tests to figure out what was going on.  We pretty much lived at the hospital with him, taking turns so the other could go home for a shower and some sleep, because by then he was sicker than he had ever been.  After a few days in the hospital, he was in the bathroom when he suddenly called out in a whisper to my husband.  One minute he was fine, the next minute he couldn’t breathe.  The nurses weren’t responding to the call button, so my husband placed him on oxygen turned all the way up, to no avail.  It just kept getting worse.

Eventually the nurses did respond, and while they were working on him, my husband called the “girlfriend” to let her know what was going on, just to be nice since K had just visited her and my husband thought K would want her to know.  That was a fatal mistake.

The next time we saw K, he was in the ICU on life support, though he had a living will and made it extremely clear to everyone that he didn’t want to be put on machines like that.  We soon discovered that the “girlfriend” had been back to her old tricks, telling doctors and nurses at the hospital that she was his wife, and she had ordered them to put him on the machines.  She had to make sure he left her something, after all, since the only reason she was with him was to use him anyway.  Little did she know, but he had already drawn up a will leaving everything to us, with verbal instructions for us to decide who gets what.  It’s not like he had much anyway, it was mostly just that old vehicle and some household goods.

It will not surprise anyone to know that we gave his possessions to his family, though we kept a few small things for the grandkids, and gave her absolutely nothing.  He had specifically left his jewelry to the grandkids, but she took it while he was in the hospital, since he had been at her house when he became so ill.  She then sold it to a pawn shop.  By the time we realized what she had done and went to retrieve it, the pawn shop had already sold it to a third party.

The situation in the ICU was grave, obviously, and we were faced with a horrible decision: either leave him on the machines, which is something he had made very clear, time and time again, that he never wanted; or else have him removed from life support, and he would surely die.  He couldn’t speak while on the machines, and he couldn’t write either since his hands were bound to make sure he didn’t pull out the tubes, but luckily we already had a form of sign language that we had used whenever he was out of breath (which was often, sadly).  After talking to him about it, he told us that he loves us, but that he wanted it to end.  He wanted us to take him off life support.  We asked him over and over again, to make absolutely sure that’s what he wanted.  He was firm in his answer.

Though I knew that was what he wanted, and that it wasn’t my decision nor was it my place to substitute my decision for his, it was still the hardest decision of my life.  There was still a chance that the doctors could repair the fistula, if they could get him well enough to get him off the machines (but he was going to die soon even if they did repair it, since the chemo wasn’t working, so he would only suffer all that much more.  So in my mind, I understood what I had to do, but in my heart, it was not something I was prepared to do.  Honestly, due to the “girlfriend” pretending to be his wife and placing him on machines against his will, I felt like I was being placed in the position of killing my friend.  At the same time, when he made us his powers of attorney, he made it clear that he was doing it because he trusted us to do what he wanted.  However, I never dreamed I’d have to “pull the plug”, because there were never supposed to be any plugs to pull.

My husband and I realized that we had no choice, we had to do what he wanted because we had sworn to him that we would; he had no quality of life at all, and he never would again.  So we talked to the doctors, and scheduled a time the next morning for him to be removed from life support.  I don’t know why, but I was picturing how people are taken off life support on TV shows, where they just kind of fade away, no suffering.  No one warned us how horrible it would be, though, and I wish they had so I could have been prepared for it.  As soon as they removed the life support, K’s entire body was gasping for air, and that went on for minutes.  There was absolutely nothing we could do, except stand there and hold his hands while speaking softly in a pathetic attempt to soothe him, as we watched him die a slow and torturous death, being tortured ourselves because we knew that we caused it to happen.

For a long time, I blamed myself.  I told myself again and again that I was only carrying out his wishes, but that was precious little comfort.  I had nightmares about his death, and I started having anxiety attacks where I felt like I couldn’t breathe.  It was just more than I was ready to handle, because it all happened so quickly.  We had really thought we’d know when it was the end, and that it wouldn’t happen that fast.  We never thought he would get that sick, that suddenly, much less that he wouldn’t be safely with us when it happened, so he could get immediate care.  We never dreamed she would let him suffer like that for over 24 hours, and not even bother to try to help him in any way.  We actually thought we’d just find him one morning, that he would pass peacefully in his sleep; I guess we just needed to believe that, in order to get through taking care of him while he was dying.

What haunts me the most is that he didn’t deserve to die like that.  No one deserves to die like that.  And while I like to think our presence at his deathbed brought him at least some small comfort, at the same time I secretly wish I hadn’t been there to see it.

While today I’m doing much better dealing with the reality of what we had to do, it still bothers me.  I still think about it pretty much every day, though not as often as I did in the beginning.

I’m looking forward to the day when I think of K, and picture only his carefree spirit and fun personality, rather than his pain and his torturous death.  I know that day will come, I’m just not sure when.

While discussing K’s death and the circumstances surrounding it is somewhat cathartic for me, that’s not why I’m writing this post; if it were, I’d have written it a year ago.  I’m writing it because I think maybe someone, somewhere, is going through something similar while caring for a dying loved one, and perhaps my story will somehow help them, in some small way.  Or at least, that is my hope.

In closing, I’ll leave you with the song we used on the slideshow we made for K’s funeral.  It’s called “Carefree Highway”, the artist is Gordon Lightfoot, and it always reminds me of our dear free-spirited friend K.

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2 thoughts on “Surviving the Storms of Life: Caring For A Dying Friend

  1. Your experience broke my heart. When some-one you love undergoes such pain, the addition of emotional pain is horrendous. I cannot find words sufficient to comfort you, but know that my heart is with you. You have been through so much – I find it hard to believe that anyone could be so cold and exploitive as his so called “girlfriend”. If ever you are in a position to visit the U.K. , I live in Wales “the land of song” and Caerphilly, which is where I live is beautiful, with a mountain and a 1,000 year old castle – you are welcome to my hospitality because you sound like real nice, kind, gentle people. Kindest regards and respects Pamela Tron (pamelatron@hotmail.com) Date: Thu, 3 Oct 2013 22:41:24 +0000 To: pamelatron@hotmail.com

  2. You are a truly strong woman! It takes a very strong and special person to do what you’ve done. But please don’t beat yourself up over not being able to get your friend to quit smoking. It’s a very difficult thing to do and, like a person with a drug addiction, they won’t quit unless they want to quit. My heart and prayers go out to you and your husband.

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