Friday, April 29, 2011

Words of Wisdom

After learning my brother Paul was in hospice care I called my Dad and my brother Nate to see when we were going to all meet up for a visit together. We were all going to wait for my husband to get back from work but then JD called me and said he wasn't going to be home until May 20th instead of the May 4th date he was planning on. Since the schedule had changed my Dad and I wondered if meeting sooner rather than later was the prudent thing to do. So we called up Nate and asked when was the best time to get here from the East Coast in his schedule. The best time for all ended up being April 27- 30th. And of course once we had gotten that all settled JD's company decided that he didn't need to stay at work until the 20th and would be home May 4th. Oh well, at least this meant it would be a family visit. My Dad, my two brothers and I all together again. The last time we were together was at my Mom's funeral almost 2 years ago. So we were way overdue for a family meeting.

Of course a couple days before we were all set to leave I came down with a cold. The plan this time around was to leave KD with her Grandparents (JD's parents who live two doors down) and I would just bring baby AD. I was doubting if I would even be able to handle the road trip and if I would just be miserable and too sick to even visit while I was at Paul's. And then the day before we left KD's Grandma got sick! JD messaged me on how things were going and I started cussing via Blackberry messenger. I felt like I wasn't going to be able to see my brother, everything was against me and this visit and I had no idea if this was going to be my last chance to see him or not. My head was spinning and I was starting to freak out.

I had gone to KD's school that morning, despite being sick, to teach and I had forgotten my camera. KD was due to be special helper for the day and I had loaned my camera to another Mom to take pictures of her and I together at the front of the class leading circle time. This was just too much for me to handle, I was sick, Grandma was sick, the camera was lost, my brother is dying. I didn't have the keys to the school and I was leaving the next morning to see Paul, and I didn't want to have to rely on others to take pics and get me copies... anyways, I was unhappy. I finally got a call back from the Youth Pastor of the church where the school meets and he said I could come by and they would let me in and have keys to the classroom so I could fetch my camera (The Mom had put it in KD's bin for me to get it when I could). One crisis over. Now to think about what to do with KD if Grandma was going to be too sick to watch her. Do I take KD or not go or what?

Finally I remembered my neighbor offering to watch KD overnight if I had to run up to see Paul. So I called her and cashed in on the offer. She was happy to help out. I called Grandma to let her know but she said she could still watch KD and not to worry. But the next morning I got a call from Grandpa saying she was even more sick than the day before. Thank God I had talked to my neighbor the day before. I ran next door and told her I still needed her to watch KD and then I went and got KD all set up with an overnight bag. KD was so excited to be staying over with her little buddies next door, she had no problem saying goodbye to me. There is a little girl her age and another one a couple years older next door and also a little boy two years younger than KD. They all have a blast with each other. Crisis averted, now time to get in the car with the baby and my Dad and visit my brother.

We did the road trip all in one day, the baby did really well... slept through most of it. We went directly to Paul's place. When we stepped in the door my other brother, Nate, was already there visiting. It was nice to finally see Nate again too. We had a few good hours with Paul and then he just couldn't handle the pain and the small talk anymore, but at this point it was 8:45 pm anyways and time to get to the hotel and put the baby to bed.

During the next couple days there were moments when we showed up and were pretty much shooed off because Paul wasn't feeling well and in a poor mood. And then there were moments where we were all laughing and having a good time, or talking about death and crying and lifting each other up. In fact during one visit it was just my Dad and I with Paul and they were talking about the frustration of all this pain he was in and not knowing how the end was going to come and Paul was saying he wasn't the type to commit suicide or he may have gone for that route by now. I was sitting there with the baby listening and then started crying. Paul asked me what I needed to talk about, what was on my mind. I said I wished there was something I could do or that I had a solution for all of this and said it was frustrating. He said, "Don't think about what you can't do, think about what you can learn from all of this." I knew he was right, and I knew right then and there that those were some great pearls of wisdom.

I can't believe it! He's the one suffering and dying and there he is offering me words of wisdom! Shouldn't I be the one encouraging here ? Amazing. Truly amazing. He is such a special person. In fact tonight, as I hugged him goodbye, he said, "I'm okay. I know you want to do everything, but I'm okay." Almost got me crying again, but I held it together. There he goes... counseling me in my grief when he is on his death bed.

This whole process is difficult with Paul. I don't know how long we have with him, I don't know how this cancer is going to take him, I don't know long he is going to have to suffer. I don't know a lot of things. But I do know that there will be plenty of lessons to learn from my big brother still and I just need to keep myself open to those learning moments and keep showing him I love him. That's all he needs, for me to love him and to not worry about him. Hard to do, not worry. But I must say I do see that he is in good hands with Ruth, his girlfriend, and I also see he is strong enough to go through this challenge without his baby sister nearby holding his hand. I want to be there for him, holding his hand, but that's not my job. I'm going to miss my big brother. He is wise and amazing and I love him so much.

Thursday, April 21, 2011

Brother in Hospice Care

I found out today, via an online forum my brother Paul uses to keep everyone updated, that he started hospice care yesterday. He said he was all hopped up on drugs and in a hospital bed at home. It just hit me hard at that point. Like I mentioned before, I was on the edge of being a sobbing mess and that just did it for me. My daughter was at preschool and fortunately my neighbor, who was working there today, said she would bring her home for me. When my neighbor pulled into the driveway to drop off KD she saw me crying and it was good to have someone offer some words of support at that point. She even offered to watch KD if I wanted to hop on a plane and go see my brother. WOW! I really appreciated her saying that.

I called my MIL and asked her if she could take the baby and KD and give them their lunch, I needed to collect myself and not be crying like that in front of them. I also wasn't in the mood to make lunch and figure all that out for everyone. She came over right away and I had a chance to call my other brother Nate and let him know what I read, and then I called my Aunt (my Mom's sister) to let her know what was going on. It has been too long since I gave her an update.

I called my brother's GF, Ruth, to see what was going on from her perspective. She didn't answer her phone but did call back while I was at church for the Maundy Thursday service. She explained that Paul was really out of it on the drugs and wasn't sure what his post said, but that he is going to get the radiation treatment that he has been wanting. Apparently it was going to cost them a lot of money to get the radiation for him and then she called the hospice people and they are going to take care of the majority of the cost! I think they have to pay $1500 upfront and then hospice will pay the balance. That is great news! I have my concerns that the treatment will do more harm than good, but praying that isn't the case.

Paul has a very large tumor (about the size of half a gallon of milk) in his groin. That is causing him a lot of pain and also a lot of difficulty when going to the bathroom. So the radiation treatment is happening in hopes that it will shrink the tumor enough to give him some relief. It will probably just grow back, but he is hoping that maybe it will grow back in a different shape and not cause so much problems with his bowel movements. That would be nice.

Hospice has started treating his pain, which is good. He was in so much pain he was in tears when I saw him. But I hope also that this radiation will reduce his pain to a level where he doesn't have to be so heavily doped up and therefore not as delusional as he has been because of the heavy medication.

I pray and I thank those of you who pray for my brother.

Wednesday, April 20, 2011

Visit With Brother

I learned that my brother got off the clinical trial. He wasn't able to stay on it and get radiation or surgery at the same time. He wanted to stay on the trial to keep his tumors from growing as rapidly as they do when he isn't on the clinical trial's pill. But alas, this was not an option if he wanted to do something about the main tumor that is causing him a lot of pain. After I found this information out his GF called the family and encouraged us to make a visit... quickly!

I was on Spring Break from teaching at KD's school, so I had the free time to make the drive up to see him. He is an 8-10 hour drive away up in Northern CA. But JD couldn't go with me and the kids. Although JD was home he was still "on call" for work. They didn't need him for the majority of his rotation due to plane maintenance and co-workers getting surgery or out sick. He didn't have a date for when he was due back, so he had to just sit around at home and wait while I hopped in a car and left to see my dying brother. How sucky is that?! My Dad said he would drive us there, so thankfully I didn't have to do the long haul driving and I had company. My Step-Mother came along too. I get along okay with her, but we aren't very close. KD was cute with her during the trip though. She wanted to sit on her lap or brush her hair for her, or would ask her to take her to the bathroom. Kids are good to have around when making a difficult trip. They keep your mind on happier things.

The drive up was split into two parts, so the first night we stayed at a hotel mid way up and the second night we were at my brother's place. During the drive the kids did fine. In the hotel room I was a bit apprehensive about how things were going to go. KD hadn't been traveling like that since she was 6 months old (and now she is 3 and a half!). And baby AD I have only done over nights with him in a hotel. But I haven't done both kids, and myself, all sleeping in one room. I got a room with two double beds but didn't know if KD would sleep in hers alone in a strange hotel. AD slept just fine in his pack-n-play crib. KD I had to finally just shut all the lights off and get in bed with her to get her to settle down and sleep. She was homesick and didn't want to be alone, but I warned her that after she fell asleep I would be using the other bed to sleep in. She did fine once she was asleep.

When we finally arrived in my brother's town we went over for a visit. He lives in a 5th wheel trailer that belongs to his GF. He was in bed and in pain when we got there. During the 2 day visit he was either in his bed or in a chair in a reclined position. And moving from one spot to the other was painful for him. At one point he cried and then I cried. It was so hard to see him hurting like that.

That second night I was in a hotel room that had two rooms, one for my Dad and his wife and the other had two beds for me and KD, and then of course AD was in that room with us. I was tired from driving all day and then mentally drained after seeing my brother and KD was saying, "I wanna take a shower." I had given her a shower at the first hotel so she didn't need another one, plus it was getting late, and I was very tired, so I said, "NO, not tonight." AD was also ready to be fed and crying his eyes out. My Dad and his wife retired to their bedroom and then all hell broke loose. KD started whining and crying, basically throwing a tantrum about not getting to take a shower, and AD was crying and wanting me to pick him up. I was trying to get KD to get ready for bed and take her clothes off and use the potty while I made a bottle for AD. Anyways, this whole scene started escalating and I tore off KD's clothes while I yelled at her to use the potty and then spanking her twice on her bare bum while she cried and refused to do what I asked. Finally my Dad came out of his room, as I was in the kitchen making a bottle for the crying baby, and asked if everything was alright. I started crying and saying, "NO! It's not alright!" And he then proceeded to get KD to calm down for me. These are the moments that make me realize I need the medication I started taking and the moments that make me think I need my husband home! Thank God my Dad stepped in and helped calm us all down. He even said I was a good Mom and that I am doing better than I think I am. That was nice.

I am sure I was just stressed and tired etc from the travel. But I hate freaking out on my kid and spanking her in anger. I told my Dad that if anything like that starts to happen again to remind me about time-outs. What I should have done is told her she had to get ready for bed or she would get a time-out. There is no reason for her to be in a fit and for me to yell and spank her without any warning. (At this point I wasn't feeling the effects of my new meds and was starting a new dosage. Obviously, it wasn't working for me yet. I started another medication in addition to that new dosage and now seem to be feeling much better. JD left for work a couple days ago and I have been fine with the kids.)

Back to the visit... We were all shocked on the second day when my brother decided he wanted to go out to dinner with all of us! He made it through his meal and then had to go lay down in his GF's camper/ truck. But I am glad he made the effort. I am hoping that he finds something to help him with the main tumor and the pain SOON! Talks of hospice care and plans for cremation were topics of conversation between he and my Dad, not something I wanted to hear. I am so confused as to what I should feel. I feel like I want to mourn but then my brother isn't dead, but then I realize he is in the process of dying. Very strange emotions. I feel like I am about to cry at any moment, just push me a little bit over that line and I am going to be a blubbering fool.

When it was time to leave I wasn't even able to give my brother a hug, it hurts him to even be touched. But we did an "air hug" and said we loved each other. It was good visit, but difficult at the same time. He was sitting or lying down in pain most of the time, but he was able to talk to us and have some conversations with a clear head. That is one thing that I don't look forward to, the day he is in hospice care and he can't even talk because he is so drugged up. I told his GF that if she wanted to move him down near myself and my Dad that I wouldn't object. I don't want her to have to go through those end days by herself. And I don't want to have my brother dying and in a place where I am unable to see him as often as I want. I want to be able to sit by his bed and talk to him and encourage him, even if he isn't able to talk back. I want to be there holding his hand as he journeys from this life to the next. I would want my family to do that for me if the tables were turned.

Of course the morning of the last leg, driving back home, I found out JD had to go back to work. This news was horrible to me. #1 It meant he could have gone on this trip with us! #2 The moment I got back with the kids he was going to be packing and heading out the door! He needed to stay at a hotel by the airport because he had an early flight the next morning. When I got home JD suggested we all stay at the hotel with him. I hated the idea of another night in a hotel, but I didn't want to miss out on seeing my husband before he left. I agreed to go with the kids, but then KD decided she wanted to stay at her Grandma's house (JD's parents live two houses down from us). JD actually let her do that! I was shocked, but I also knew KD was ready to be in familiar surroundings, and the next morning JD would be leaving and I would be in a hotel room alone with both kids to get fed and ready again. So I didn't object to her sleeping over at Grandma's. But this whole leaving right when I get home from seeing my dying brother thing just sucked. And not going with me to be an emotional support while visiting my dying brother when he could have (even though he didn't know that at the time) also sucked.

Sometimes being a pilot's wife sucks! Although the time he was home has been great. And I am blessed to have him home like that, around 24/7 with me and the kids and no job to go to every morning. And he has been kept home from his last two rotations. The last time he only had to work the last week of his rotation. This time he has only one week as well, after that he has to go to recurrent training though. We are still hoping he can quit his job soon. But for now I'm still a pilot's wife. Loving the times he is home and helping out full-time, and hating the weeks he is gone and I'm doing it all alone. Even if I have the in-laws down the street and great neighbors no one can take the place of your husband. No one else can take that role or fill his shoes.