Does he really want to go? Really?

I arrive. He's asleep. I stroke his head, trying to arouse him from slumber. He responds minimally, and I mean minimally. He doesn't look up. I start talking to him and get a little response. How are you feeling? He mutters unintelligibly. I put some apple juice up to his mouth. He sips a tiny amount. I keep doing that, and some of it drips down his chin. I keep talking. He can't even look up at me. Should I talk about his life? Should I ask him what he wants us to do with his remains? It's very hard to guess what I should do. New territory now. We're in new territory.

I feel pretty sure that my brothers will suffer more than I will when he passes.  I suffered when Mom went, and I really suffered. My sister, I can't say if she will suffer. She is somebody I barely know right now. This is so slow and drawn out. It's a shame to see the decline in this fashion. I guess we all would like our father to keep being himself, and then die of natural causes in a peaceful way. It seems that he will die of starvation. He'll experience organ failure more than likely.

But, really, how long can someone exist without hope? I just don't see that he's got any hope at all for anything to change. What could have been? That's always what we wonder. I could have taken him to Tijuana to get his dentures fixed a little. He can't even chew lentils now. He spits out the skins. How can you enjoy eating lentil soup when you have to chew forever on each little bite, and then spit out the skin? Maybe I could have pushed harder for better rehab therapy. When he came here he was recovering from a broken hip. He just got weaker and weaker. They scheduled an hour on Monday, Wednesday and Friday. That was no good at all. He needed 15 minutes twice a day. It seemed like he lost capability so fast.

How do you get stronger at age 98? He should be able to walk, but doesn't have enough muscle left. He still looks pretty good, if cadaverous at 115 pounds. His hair and skin are healthy. But that doesn't get you out of a wheelchair. That doesn't get you to where you can go anywhere and enjoy yourself.

I need to try to comfort my brothers. It's very hard for them to lose their dad. Why do I feel somewhat detached? Over-exposure? Have I come here too many times, leaving my husband and my home and any hope of doing anything productive, just to have him refuse to drink anything, and even be temperamental with me? When I say temperamental, it's not really descriptive of how he acts. He can be mean and rude.  Well, he did love us and was the best dad he knew how to be given his upbringing.

Sorry to inform you -- Dad's last week

My brother K wrote this email to all the family:

My brilliant Dad

    My sweet loving, compassionate, understanding, brilliant father with the most wonderful personality combined with unmatched humor, who instilled values in me that has affected countless lives, and who brought comfort to many souls is now on his death bed.

    We have had our last laugh together last month. We have had our last conversation, shared out last Reese's peanut butter cup, had our last share, our last disagreement. 

    My Dad will never tell me again how happy he is to see me. His eyes will never light up again when I enter the room. He will never give me fatherly advise again. He will never comfort me when I am down on myself. He will never recite a poem to me again or share quotes. We will never talk about history, adventures, religion or politics again.

    A big giant piece of my life is leaving me. I have talked about my wonderful Dad all of my life. Everybody who knows me knows my close relationship with my Dad. All of the platitudes that he has left me with fall short when it comes to my grief and loss. I miss my Dad. All that is left now is my crying, my tears, my sorrow, my pain.

    Please don't call me for awhile because I can't talk, I can only cry.

    I will go and sit with my Dad and talk to him without expecting a response. I will tell him that I am in deep sorrow, that I love him and miss him while he refuses to eat or drink. I will give him permission to die. His spirit will live through me and all that he has come in contact with.

    I gotta stop now because I can't see the keys through my tears & snot. 

K

He Wants to Die in Peace

"Help Me! Please Help Me!" he keeps saying this. What help can I give him? His UTI is giving him pain. He says he can't tell us how bad it is. Of course he can't tell us. No one knows another person's pain. I have had bladder infections in the past that have burned like hell, but I'm sure I know nothing about his pain. He keeps asking for help and I just don't know what to do. He'll ask for help and then say, "Just let me die in peace."

Is this the time to discuss how he wants to die? I do intend to let him die in peace when the time comes. I'm not going to do anything to stop him from dying if he is really ready to go, but I don't think a UTI is worth dying for.

I brought my new computer with me today. It's got a bigger screen. I'm going to show him the trailer from "Lincoln", the movie. He'll like it for sure.

Two days ago, on my brother's birthday, he took off work to come with my dad on a visit to a urologist. Someone screwed up the orders and they went, instead to a GP's office. My brother and dad had to wait for an hour and a half for the transportation to return to pick them up and return them to this facility.  That was a total waste of time. Who do we get mad at? The nurse says she didn't know the orders were wrong. 

UTI -- Over a Month Now

It's a beautiful day outside. And it's Friday. But in here it's anyday and it's not beautiful. Dad's in bed suffering from the symptoms of a nasty urinary tract infection. He's 98 now, and I don't think people expect him to be around for much longer, so what should they do? Well, I say they should at least make sure he has access to water. How's that for lowered expectations? Just water, I'm thinking, would really be a help to have a hope of getting over this. Every time I come here, he's in bed with no water in reach. He doesn't ever ask for anything, so they just let him lie there. Now Iask myself who "they" are. CNA's are so busy here. They have a very difficult job. Most of them are cheerful and caring, but we can't expect them to understand that this man has a need for water when he doesn't ask for it. The nurses should be a little more tuned to the problem. They always seem so busy too. His water is not like someone else's meds. They worry about passing out medication. That's number one. And he never asks for anything!
His personality is a real puzzler. Always has been. No other person I know has such contradictory aspects to his character. Truly a puzzle. Also, he probably doesn't feel like he's thirsty.

More Sentimental Than Ever

Our dad has always been expressive, not a man who hides his sentimental feelings. He always did tell us he loved us when we were children, and he is still telling us. Lately though, it seems as if that's all he can say: "Have I told you lately how much I love you?" "I love you so much there are no words to express it." or "I'm the luckiest man in the world to have such a wonderful daughter." If we rub his head, shoulders or back then he is effusive. Since he has always been very appreciative of that kind of attention, I am reluctant to say that this is a change, but his expressions of joy just seem more rapt, more urgent. It's as if his ability to enjoy living has been distilled down to only enjoying a hand on his back or head.
Yesterday I was on my way to see him and decided to call my sister. I was so happy to find out that she was already there at his home. This meant a more fun visit for me and for him. I therefore was completely surprised and delighted when I received a call from my niece Ana who lives 9 hours from here, saying that she and her new husband were in our area for a job interview. She wanted to come down and introduce her hubby to her grandpa.
I prepared him for the visit so that it wouldn't disappoint her that her grandpa didn't appear to remember her, or know that she was married. I do think the visit went well. I am not absolutely sure he remembered her, but he told her he loved her many times and talked to her new husband enough to make them feel like it was worth the effort.

He Is Not Maintaining

When I arrived carrying my laptop computer, Trader Joe's Garden Patch juice, cheese, crackers, fruit cocktail, and my usual bag that has tissue, plastic cup, spoons, bowl, scissors, jojoba oil, and other sundry items that I might need in the visit, I found Dad still in bed. He was very happy to see me. I offered him some Garden Patch and he readily accepted it, but instead of really drinking like he usually does, he just sipped. He ate some cheese but left the crackers. He only nibbled at the cheese which he normally wolfs down.
I discussed a few items of family gossip and my husband's visit to the doctor for his injured shoulder. Dad was alert enough but not talkative. His cough was still troublesome as it has been ever since I returned from Texas two weeks ago. I asked the nurse to check him. She listened to his chest and went away before I could ask what she heard.
At some point, he told me his tailbone was hurting. I asked whether it hurt more when he was in the wheelchair, but he couldn't say. I asked him if it hurt when he was just lying down, and he wasn't sure. I told the CNA about it. She said we would look at it. She wanted me to see it too. I actually was trying to walk out while she checked his problem, but she called me back. So, she rolled him over and pulled down his pants and diaper so we could see what was hurting him. Indeed, there was a bit of discoloration. I could see that it wasn't diaper rash. There was no break in the skin, but as she pulled the diaper down a little more, we could see that he needed to be changed. Really I could smell it before I saw it. Carlos, his CNA for the day was called and he changed him.
During the examination of his tailbone and the discussion of how his butt looked, we talked about him as if he wasn't there and he never interrupted. He will just sit there and allow me to discuss his condition with other people and never offer any comment at all. I often wonder what we would have to say to get him to feel compelled to chime in.
I had an LA Times op-ed piece discussing the electoral college and advocating for the end of the all or nothing way we cast votes in a presidential election. Dad was happy to discuss this. It seems like he still cares about politics and government. He likes me to read to him, but he's not able to read a whole article by himself and process the information. When I discuss family problems, he often says that it's not important. Leave it be, he'll say.
He really is thin. He is not maintaining.

Now He's Starving

I was away for a month. While I was away, I spoke to him on the phone one time. I think about calling him all the time, but I don't pick up the phone. I know I'll have to get someone to help me talk to him because he can't answer the phone by himself. I have been put on indefinite hold so many times. I get really mad. But lovely Theresa gave me her cell phone number and told me to call on Wednesday because she works late that day. That one day I was able to get through on Theresa's phone was wonderful. He seemed so happy to hear from me.

Two days before I came home my brother sent out an email to everyone in the family to come and say good-bye to Dad. He said Dad was failing fast. Since January he's lost 20 pounds so CV wanted to put him in hospice.

I know large weight loss is a cause for worry, and instead of putting him in hospice, let's ask the question, "Why is he not eating?" That question is easy to answer. The food is inedible. At 96 years old, having consumed more than average amounts of salt all his life, he is not going to be able to find unsalted food palatable. They have put him on a pureed diet because a speech therapist said he has a swallowing problem. When we bring food in for him, he eats it. He loves cheese and crackers. He loves any soup from Von's. He loves Trader Joe's Red Pepper and Tomato soup. We take him across the street once in a while for a chile relleno. He will eat real food, but since he doesn't really feel hunger pangs, he's not going to eat unsalted pureed unrecognizable gruel.

I have to work to get him off that pureed diet. He's starving to death!