Time

When the hospice nurse visited today, she told us to expect maybe 1-2 more days. As much as I hate to think about him no longer being here, it is awful seeing him this way. He is so unhappy and he never wanted this. He never wanted to be in a hospital bed with no way to take care of himself. He was a perfectionist that wanted everything done his way.

His medications are atropine (to decrease secretions), lorazepam (for anxiety/seizures), acetaminophen (for his fever), naproxen (for pain/fever), dexamethasone (for swelling), phenytoin (for seizures), scopolamine (for fever) and he just received his first dose of morphine. I left for a bit to get a change of clothes and wish Jantzen a Happy Anniversary. It is our 11th Anniversary today. I remember dancing the Father-Daughter dance with him to "Through the Years"...he may have been difficult to deal with, but he always cared about his family and did without so we could have more. When I returned, he was very agitated and we couldn't tell what was really bothering him. After we tended to him, we noticed his toes/feet seemed to be cramping up. I called the hospice nurse and she instructed me to give him a dose of morphine and call if that doesn't seem to calm him. I'm also going to give him a higher lorazepam dosage when he is due next. He is allowed a range and has been okay on the lower dose but I think it is time to up it.

I know time is running out. There are moments I am calm and other moments I feel like a child....I feel like I've been cheated out of some time. I know some people consider him "of age" to be ready to go...and no one is going to say "he was young", but he was so healthy before all of this, he put a lot of people half his age to shame.

Changes

As we all know, life can change in an instant. Our lives changed in July of 2009 when dad was diagnosed. Our lives changed again yesterday, May 14th. I was at a golf outing for University of Pittsburgh School of Pharmacy. My work phone is not working, so I was using my other cell phone to periodically check messages. Patty left me a message that basically said, "call me as soon as you get this." I called her back and she told me dad was unresponsive. I was on the hole furthest from the clubhouse, so luckily a co-worker was nice enough to drive me back to my car.

I drove straight to the house and mom and Patty and Tom were already there. He was in his usual chair but was having seizures and could not communicate. The seizures were very instense, lasting about 45 seconds at a rate of 3-4 per hour. His head would turn to the side and his face would turn purple, his entire body would go rigid, and he would seize for what seemed like forever. Earlier that morning, my mom found him trying to get dressed, and he was stopped midway with his mouth going like he was trying to say something. Mom managed to get him to the chair with his pajama top still on and in his pants.

When the hospice nurse arrived, she got orders to open the emergency medicine kit in the fridge. She administered Ativan to help calm down his Central Nervous System. He felt really warm so we took his temperature and it was up to 103, so she adminstered a rectal suppository. He reached 104.2 at one point, but luckily we have been able to keep it down to about 101 with suppositories, ice packs, and cool cloths, 100.7 was the lowest over the past 24 hours.

The nurse wanted to get him into a nursing unit...but that wasn't what he wanted. I tried to ask him if he wanted to go, but he couldn't tell me. He would follow people with his eyes, and a couple times I asked him to stick his tongue out or blink which he did, but it didn't happen too much. We know from his earlier wishes that he wanted to stay at home, so we ordered a bed and had it set up in the living room. Father Nick also came and we prayed and cried, and I know my dad knew who he was because his eyes got really big and he was responding in his own way.

He did manage to mumble, "uh-huh" or sort of grunt when someone was around and talked to him, so that was encouraging that he was still responsive.

More to come, but I can't type much more right now. Darlene, Ron, Joey, and Erica drove all night and arrived early this morning and he was able to look to the side although not respond much. He knows they are here. I know he never wanted to be this way, and I am not ready to lose him, but most of him is already gone. I just want him to be in a place where he can cut grass again and see all those that he loved that he lost. I don't want to wish the moments away but he is so frustrated and so unhappy. He has shed a couple tears when I talk to him and I know he knows what is happening but he is stuck in his own body and can't get out.

Mother's Day

I know I titled this post, "Mother's Day", but I will get to that in a minute. I was looking back, and this is from Christmas, 2008. It is hard to believe that a few short months after this is when he started having the "ache" in his side which we would eventually learn was melanoma.

On Mother's Day, we of course went to visit. My dad was in the chair in the living room, with a sweater on. Not a sweater you'd wear out to church or something, but a Mr. Rogers sweater. I've never seen him wear anything like it before. He didn't get up out of the chair one time while we were there. The worst part is, I have been experiencing awful, tremendous guilt over the fact that Kealie and Layne did not hug him good-bye. I can't get past it, and I know that they are kids....and they grandpa they knew is no longer there. He used to be such a presence in the house for being such a small person! You always knew where he was, and he never hesitated to tell his opinion. Yet, he was in this chair, and didn't say much. He watched a video Layne made for me for Mother's Day, and I watched him smile while he was watching, but he didn't say much.

Kealie asked, "what is that big thing over there?" The thing being his oxygen tank. She seemed stasfied with the answer, but it really makes me realize how much he is just different for them. In reading over the hospice materials, I know it says not to treat that person as if they are just "there"....but after a lifetime of knowing one person, now he is someone else, how are two young children supposed to understand that? It tears at my heart though, that I didn't take a minute and ask them to hug him goodbye. I don't know what I was thinking, other than I struggled with leaving that day. I may be a mom now myself, but I don't know what I'll do when I don't have my dad.

My mom called after reading my blog, and she told me I got one thing wrong. She told me she is not a saint. I told her she was. She of course, stated, "My mother was a saint. I am not." Her brother, my Uncle Len, e-mailed me and agreed with my saint statement. I told my mom, "you are what others believe you are." She is one of the kindest, nicest, caring people I know....and what they are going through is beyong my comprehension. So yes, mom, you are a saint....and dad is lucky to have you....and you him. Happy Mother's Day, I love you both.

Phone

Yesterday, I worked pretty late. It is appraisal time at work and I have to go over the annual review with each of my pharmacy managers. Well, due to some scheduling issues, I had to rearrange some times yesterday, which left me about an hour in the late afternoon before anyone came in.

I have a company vehicle, and it accumulates all my work stuff in my trunk. So during this hour, I took out all of the paperwork I no longer needed. I also have a phone in my trunk.....one of those old, heavy, rotary dial phones.

Awhile ago, my dad gave it to me. He said since we had cordless, it was always good to have a regular phone in the house. Plus, he thought Kealie might enjoy playing with it. :) Well, it has been in my trunk because it is so heavy and old. When I saw it yesterday, it reminded me of when my grandfather passed away. My dad had one of my grandfather's phones and he wouldn't get rid of it because it had belonged to his father. I felt the same emotion yesterday. It is still in my trunk. I don't know if I'll be able to get rid of it.

I walked back inside to work and my friend Jodi was leaving for the day. She said bye, and as I said bye my voice cracked.....she knew something was wrong, and turned right back around. I don't know why, but that phone triggered such a strong emotion for me, I just cried and cried.

My mom used to tell me that you cry in order to make room for more. Your body can only handle so much, so you cry to let it out and enable your body and mind to prepare for more. Pretty smart, that mom of mine.

My sister Patty texted me last evening that her and Tom took him fish tails (not REAL fish tails) for dinner and he ate them AND enjoyed watching the hockey game. So he had a good day yesterday, and that is good to hear. :)

For anyone reading, thank you for your kind comments and thoughts and prayers. I was hesitant to share this because I use writing as a way to express my emotions, but at the same time, there are days where I want people to know what is happening, so I thought a central place for updates may be best.

If nothing else, if this gets someone out of the tanning bed or into some SPF, then I will be happy. :)

Hospice

This is Dad on Easter with the kids. He was having a very good day this day. A lot has changed since then.

We started hospice this week for my dad. He is down to 120 pounds. We were in touch with Forbes Hospice last week to begin home care that would transition into hospice care once that became necessary. The nice thing about Forbes Hospice is that the same nurses do palliative care then also transition into hospice care so we can become comfortable with the same set of nurses until the end.

When the nurses came for the initial visit, they decided we would skip the palliative care and move right to hospice. He is so weak and so tired. They stopped his blood pressure medication (and in reality, his other maintenance meds could be stopped too, but if it is "mentally" a challenge for him to stop them, we're going to keep him taking them. No harm, no foul).

Hearing that we have brought in hospice has been difficult for me. At times I want to cry and at times I want to just not talk about it. Times I wish people would ask me how I'm doing, how he's doing, how my family is, and other times I want to just continue on with my day and block it all out. Today was one of those days I had no desire to call or text anyone about anything.

I called my dad on my way home today and he was a bit confused.....he told me that "Patrick and some friend of his came over to help with some stuff".....we have know Doug, Patrick's friend, for many years now, yet my dad didn't seem to know who he was. He also wasn't sure what "stuff" was going on.....and if anyone knows my dad, they know he KNOWS what goes on in his house. :) He also started on oxygen today.....he said they gave him a big tank and also two smaller ones in case he wants to go anywhere........I didn't have the heart to tell him he's not going anywhere.

I then talked to my mom, who told me she is giving him showers and she gets soaked so after she gets him dried and settled she showers herself, which is why he answered the phone. She is a saint. After 53 years of marriage, to face being alone is unimaginable to me. The social worker from hospice took her aside the other day and asked how SHE was doing. She said she was handling all of it, and is prepared for him to die, but broke down when she said, "I don't know what I'll do without him." I cry every time I think of it.

I miss him already. I was at Duquesne University today where I graduated from pharmacy school and all I could think about was how proud he was of me when I got accepted....and then graduated. He's the reason I became a pharmacist and was so driven to do well in school. He always used to tell me, "I don't know how a man as dumb as I am had a daughter that is so smart." He never gave himself enough credit. We came from a blue collar community and he took care of his family the best way he knew how, which was pretty damn good.

Since he couldn't make the talent show or Kealie's string concert recently, we took her violin over last night and she did a show for him. He was smiling and enjoyed the show. I was proud of her. She is having a bit of trouble in school lately because of all of this, they are very close. He calls her, "my little sweetie pie." Really? That is my dad saying that? Being a grandfather changes you I suppose. :)

I never thought I'd see the day.

When we realized you'd be taken away.

You held my hand, you stroked my hair.

You were the one that believed.

I am who I am because of you....

because of your beliefs, you ideas, and your commitment to me.

You made me a strong woman.

You gave me strength to believe in myself.

You are a man who is afraid of getting into heaven....

Raising three daughters gives you entrance.

Raising grandchildren gives you a straight pass.

I say how stubborn you are, and a friend's response shows I get it from you.

I say how much you love your family, and a friend's response shows I get it from you.

I was always your little girl....and I always will be. Cancer will not take that from us.

I love you Daddy.

Father Nick

I was off yesterday, so I went to my parent's house. I took strawberries and fruit dip over. My dad is craving fruit lately, and as long as he is eating, we are happy. He is still losing weight so anything he will eat is fine.

He was sitting in the chair when I got there with his feet up and was very tired. We did his Living Will, Advanced Directives, and Power of Attorney. It was mentally exhausting for myself, my mother, and my dad. He has always had very neat penmanship, but it took him forever to sign his name and initial. I am just glad that we were able to discuss everything while he was still able to do so. My mom (and myself) had trouble with his wishes, but we want to do what he wants. He decided against any type of further care...no CPR, no IVs, no antibiotics, no tube feeds, no nothing. He knows now the battle is over, and we are hoping for the easiest transition possible from life to death.

Father Nick, their priest, came over while I was there. As soon as he entered the house, I broke down into sobs. It was the first time I broke down in front of my parents. My mom and I went outside so my father could talk to Father Nick alone. We held each other and cried and cried. My mom kept saying, "he was a good man, he was a good man...he took care of his family and he cared about all of us....he would do anything for us....he was a good man....".

Father Nick came and got us and said my dad wanted us all inside. He received Anointing of the Sick and then we all held hands and prayed and received communion. I was so happy that Father Nick could come over for us, but it was so difficult, I'm guessing because of the symbolism it carried for me.