My Dad

So I don't believe anyone reads this blog, which I think is OK, because I'm going to share my true feelings about stuff, which I really would like to post on Facebook, but that's not the place to air personal stuff like this. In the event that someone I know is reading this, that's OK too. Especially if you may be mentioned because you need to hear this. Just right now tonight (1/15/15) is not the time.

Since 2008 my dad has been on dialysis. It started out as peritoneal dialysis, which means he had tubes stuck in his stomach, and he would do that every night. He's been diagnosed diabetic since 1978 and has really never taken care of it. I understand that though, as I am diabetic too and it SUCKS!! You can't eat anything you want without it screwing up your blood sugar, except for vegetables which never satisfy my hunger...if anything they make me hungrier. Anyway, because of the diabetes Dad's kidneys started deteriorating. He also developed neuropathy and over the years has lost both of his feet, cut off at the arches. We have spent many hours at the hospital with him thinking he was going to die, especially when he went in for a quadruple bypass in November 2012. His kidney function is now down to nothing which means he never pees. A human being not peeing is not a good thing. His heart function is at 26%. That is also not a good thing. Because of all this he was taken off the kidney transplant list. If you're not aware, dialysis takes the place of your kidneys, filtering everything out. It is also meant to prolong life so that in the event you are on the kidney transplant list, you will live to receive the transplant. Other than that, dialysis is useless. It's merely there to keep you alive when your body can't do it because you're not peeing anymore. And hemo-dialysis, which he was on until yesterday (and went to three days a week), costs $65,000/month!!! Did you read that correctly? That is SIXTY five THOUSAND  DOLLARS per MONTH!!! Granted, Medicare pays most of it, but my parents have been left having to pay $500/month. This is in addition to all his pills that cost about $2,000/month after insurance. It's unbelievable how much costs to stay alive when you are so sick.

And that's another thing: Dad insists he's not sick. True, he may not be feeling sick, but if your heart is not working (he currently has a defibrillator) and your kidneys shot, well sir, you're sick. He also can't move around very well because of his missing feet and because he's so weak. A lot of the time you have to help him up. My mom has been taking care of full time, fixing his meals, helping him bathe and dress, taking him to his doctor appointments, taking him to dialysis. Any time she has to take him somewhere she has to assist him outside to the car and back in and it's HARD! Even for me and my brother Paul who are two big strong men. I don't know how she does it.

So for the past how many ever years it's been now, Dad's day consists of sitting on the couch being uncomfortable, trying to decide what DVD he wants to watch next. He's given up on reading because he doesn't wear his contacts anymore and he used to read all the time. And then he goes to bed around 8:30. Some life.

When he was younger and better he used to go to work, watch the news a little, and then maybe go to the library, go to the model shop, go to the store, go watch the helicopters, etc. The key word in that sentence is "go." He doesn't "go" anything anymore. Yes, he does go to church on the weekends but that's a struggle. It's a struggle getting him to the kitchen or dining room table to eat, which he doesn't do very much of anymore. And then when he's at the table he buries his head in his hands and says he feels miserable.

That sucks!! This isn't how it's supposed to be! Dad was meant to work and play. Now he just sits and stares. I don't know about you, but that's NO quality of life.

And then lets take into consideration Mom. She usually is not one to complain and she's usually happy and all. This has not been the case for the past year or more. She's going to be 68 in three months which makes her old. And here she is having to lift this guy at various times, do EVERYTHING for him, including him biting her head off because he's a snappy kind of guy, and she gets no thanks for it. He even told her that if the tables were turned that he wouldn't have taken care of her. That's really disheartening.

Let's also keep in mind that about a year and a half ago Dr. Tien told us that the peritoneal dialysis was no longer working and we had two options: he could go on hospice and pass away or he could go on hemo-dialysis, which would prolong his life but not for long. It was also made clear that it was not going to result in him getting a new kidney because he's just way too sick. Dad chose the hemo because he didn't want to die. That's understandable. But now we've come to this point where Mom is most likely going to pass away before he does because he just doesn't want to die. But yet he has no quality of life.

So last month my mom and the rest of my brothers and my sister went to a meeting with a senior living counselor (I didn't go because I was working). When she heard the situation she was shocked that Mom was letting it go on so long and she told Mom that she wanted to meet with Dad to discuss his fear and ideas, but that Mom should stop enabling him and let him find his own way to dialysis if that's what he wants to do. He finally did meet with the counselor and said that he felt it was morally wrong to go off dialysis...that he felt it was a form of suicide. How horrible is that?! And, just so we're all clear, removing yourself off artificial life support is not killing yourself because it's ARTIFICIAL. It's not REAL life! She suggested he talk to his bishop about that but that she wanted him to know just what I had explained previously. Mom had called to set up an appointment with Bishop Barney but never heard back from his executive secretary.

Last Friday, January 9th, I drove myself and my mom up to my cousin Jake's birthday dinner at the Mandarin in Bountiful. The whole drive she was venting her frustrations that Dad doesn't care about how taking care of him is affecting her and that she really feels like she's going to die before he does. She was furious! And it kills me to hear her like this.

Tuesday, January 13th, she had setup a meeting at their home with Silverado Hospice to discuss what that would be like as an option. We all knew that hospice meant certain death. So I left work early and went to their house to be there. Paul was there too and Pibby showed up after the hospice chaplain Terra arrived. Terra explained that hospice was for people who have decided to not continue with curative means or practices to keep them living. Hospice is to prepare you and guide you through the natural act of death. It is also covered 100% by Medicare. Dad almost immediately said, "I'm not going on hospice because I'm not ready to die!" She asked why it was that he wanted to keep living and he said, "Because I want to be here when Heather's baby is born." (That is on May 27th). He also later brought up, "Who's going to support your mother?" As though he had been doing that this whole time. We all shared how much we loved him but that we were tired of seeing him miserable and that we could see no purpose in him going on, especially because it was killing our mother. She also spoke up and said, "Lewis, I can no longer take you to dialysis because I'm too tired and worn out. I love you but I can't keep going on like this." Terra explained that they may want to look into a rest home however that can start at $6,000/month and it is not covered by medicare. She gave us a booklet to read through and said call her if he changes his mind. We discussed with him after she left what he thought and he was still adamant that he's fine with the way things are. It was depressing to say the least. Heather showed up and told him her feelings too.

I called the Bishop's Executive Secretary John Venables to see why he hadn't called Mom back and found out that he had been trying to reach her on her home phone but the voicemail isn't set up. So he said they could meet with the Bishop at 7 that night. I was sure Dad talking to the Bishop would help him understand that he wouldn't be committing suicide if he chose hospice. Not to mention Pibby had found an article on the Church website that confirmed that stating that death should be looked upon as a beautiful experience as it is getting you one step closer to your Father in Heaven. I took them over there and sat out in the hall talking to one of the counselors in the Bishopric. Before they went in I pulled the Bishop aside to tell him what Dad was thinking. After awhile we came back out and went home. Mom told me that he had told Bishop Barney, "Well, Beverly and my kids want me to die."

UGH!!!

I know he said it in jest, but people don't get it when he's kidding. And he didn't explain WHY we want him to die. And it's not that we want him to die, but COME ON!! He's been miserable for years now, he's making Mom miserable, and there is just no fix to this situation but death! And from my view, I would be excited as hell to get out of this shit-hole world, especially if my parents were on the other side. Not to mention all the other relatives and ancestors that I haven't met. I look forward to it.
So that was depressing.

Wednesday, January 14th I went to work with the worst knot in my stomach because this situation just didn't seem like it was going to come to a peaceful end. And it also occurred to me that he usually goes to dialysis on Wednesdays so I was wondering what Mom was going to do and she said she was going to take him today and Friday but after that he'd have to find his own way. Well, Heather spoke to her and Mom told her that she yelled at Dad all the way there for being so inconsiderate of her feelings and acting like he doesn't care if it's destroying her. She felt bad.

About 3 PM Paul texted me saying that Mom had told him that Dad had told the dialysis place that he wasn't going to be coming back!!! I couldn't believe it.

But then that's when it hit me: my dad is going to die soon. You have to understand he's been the greatest father! He's never beat us, he's never cheated on my mom (as far as I know), he's always had a great job, he's always been interested in what us kids were doing, and he was always the one that was helping us to learn about the world around us. And now all this time of being mad that he was choosing to live was over and the reality was here: he's going to be gone. I couldn't stop crying so I left work early. As I was coming down the street I was surprised to see who I thought was Shelley, his youngest sister, driving away from the house. She didn't wave to me or anything. When I got to their house it was very somber. Paul was already there and had tears in his eyes. Well, it turns out Shelley and Louise (his second youngest sister) were there and the shit storm that we thought was going to happen when they found out about hospice had happened. And even worse than we imagined. Shelley had lost her mind (and quite frankly she's always kind of crazy...she doesn't handle stress well at all). Louise also told my mom that she couldn't believe Mom was doing to this to her right now. Louise's husband of almost fifty years passed away last month from emphysema. And honestly, he was a horrible person .I won't go into it, but he was...to the point where she made sure everyone knew that she does not want to be sealed to him. I was sure she would understand this but she was very upset. She thinks that Mom forced him into doing it. And Paul told them that there is no point to Dad living as he has no quality of life. So then Shelley has to pipe up and say, "Well, David has diabetes. Are you just going to give up on him too when he gets worse??" Paul responded, "David is actually having the good sense to try and take care of himself which Dad never tried at all." Well, they left in a huff. I asked Dad why he changed his mind and he said it was because there just didn't seem to be a good option financially and he knew it was killing mom. I asked him if he felt we pushed him into it and he said, "No, I just thought about it today and it doesn't make sense to keep doing dialysis." We stayed there for quite awhile. Mom was really hurt by his sisters. What kills me is that they have no idea what has been going on because all they do is talk to him and he only tells them half truths like he's not sick or that "my kids want me to die" and all this other BS. Not to mention out of the 39 years they've been up here NONE of them have been over to visit us more than 10 times (with the exception of Shelley who moved up here. But had she remained in Price it would've been the same). Let's also take into consideration that my dad, after his own father died, would've never gone down there at all had it not been for my mom telling him that he should because it's his family. And yet here these people are thinking Mom is the enemy. Not to mention, how about offering to help instead of criticize? Seriously, they have no idea how hurtful they're being. I understand my dad is their brother, HOWEVER, he's my mom's husband first, our father first, and their sibling second. He left home right after high school graduation. That says something, don't you think?

Anyway, I posted this meme on Facebook that says "Don't judge people for the choices they make when you don't know the options they had to choose from." Well, Natalie (my cousin from my dad's oldest sister) responds "Only if you get to make your own choice and not forced into one by others."

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

REALLY??! So I lost my mind and responded, "Natalie, I'm so glad you know exactly what has been going on because you and your family always visited over the years, especially recently. I posted this specifically with people like you in mind." She liked it but then, after talking to my bestie Gina Mother F'n Falcone, I took her comment and mine down. I did notice that she liked mine, for whatever reason. However, I was still mad. How can these people even believe that we would FORCE my dad into making such an important decision?? So I decided I needed to call Pamela, Natalie's sister (and one of my favorite cousins) to see what she thought of all this because usually she's the one that has a level head on her. I also wanted to tell her that she needed to tell her mother and our aunts to knock it the hell off and grow up plus I wanted to tell her to tell Natalie she knows nothing of what she talks about. Pamela didn't answer which turned out to be a blessing, however, I lost control and went off about her "stupid mother and sister" and that they can all eat shit. A little later Pam called back wanting to know what in the hell is going on. We talked and I explained myself and apologized. But unfortunately she believes like they do, that hospice is not a good idea and that she doesn't think Dad would choose to die of his own free will. That really makes me sad. It's like a bad dream. So I popped some Tylenol PM and passed out.

To be continued....