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!

Nothing much to talk about anymore

Friday was one of those visits that left me feeling very happy and very sad. I arrived just after lunch and he was sitting out in the hall in his wheelchair with his head down as usual. I approached from his back and put my hand on his shoulder and said, "Hi Papa! How's my dad?" He reacted with vigor. "Linda? Is that you Linda?" he asked without picking up his head to actually look at me. I started talking to him about the big news about the earthquake and tsunami in Japan. He was aware of it but hadn't seen any of the dramatic photos that were being shown already. I put my laptop on his bed and brought up some pictures on Yahoo news and Google news. He was very interested. "Those poor damn people don't need another nuclear Holocaust!" He was indignant that this should happen to these nice people.

One of the nurses came into the room. I hadn't seen her in about 3 months since she went out on maternity leave. I was so happy to see her. I engaged in conversation asking about her baby, and her leave. She was very forthcoming, maternal pride showing when she told us how good the baby girl was. When she left, my dad said something to me that he had never said before. He actually said I had a good personality. Many times he has rebuked me for being too talkative. He has reproached me for being negative. He has called me a "glass half full person". I have never had him praise me like he did Friday. I think it shows how grateful he is to have me come and see him, relieving him of his loneliness and boredom.

The two of us didn't talk about much. I let him put on the headphones and watch old TV programs on youtube. He watched Groucho Marx and Life of Riley. I also had a couple of videos that my friend sent to me showing a man in the cage with a lioness and her cubs. It was remarkable to see that great big pussy cat wanting to be petted and wanting to lay down on his lap the way my kitties want to do to me. Dad really enjoyed that.

My brother just called me from CV. He and my other brother went into Dad's room and he was asleep. My brother suggested that we get Dad moved to hospice. No, I don't think it's that time. He still is healthy. He still is a long-term care case. Not ready to die now.

We have to be patient. It seems so hopeless, but it has to run its course.

Candida Infection on His Hand

Candida rash is what they called it, a type of yeast. After holding his hand closed for so long, not allowing it to be cleaned, no wonder that it's got something growing in there. Today he told me that he has stopped worrying about it. He said he has resigned himself to the way it is. That is just the way his attitude is killing him. This I believe. It doesn't have to be like this, but maybe this is actually the right attitude for a person his age. "Youth can never judge age" our father has told us all our lives. I think that is mostly true, but if we are to learn from our elders, then we must judge them to try to figure out what we want to learn. My siblings and I mostly will say to one another that we really don't want to wind up like Dad. Watching his decline is enough to intimidate anyone who hopes to get old. Well, it's already too late for me to die young, but I sure hope I can avoid this long slide. None of us know what it's like to actually be 30 years older, so it is kind of a hollow statement to say we'd rather be dead quick.

Our clan tends to have big heads. Dad was always proud of his big head. Hats were always too small for him. He took that to be indicative of superior cranial capability. Now that big head seems to be too heavy for him. He sits with his chin practically resting on his breast. I try to get him to look up, but if I am successful it's only for a brief moment. He drops his head back down right away.

He still has a full head of hair. This is another thing he has always taken pride in. Glad to have

hair he always says. I always say that if you do have hair, you need to have clean hair and a good haircut. Before he came to the convalescent home and I had to help his caretaker wash his hair, it was a terrible fight. He had such bad seborrhea, it made him look diseased. He always had a close haircut on the sides and about two inches on top. Now that he gets his hair buzzed off, you can really see the huge cowlick on top of his head. Hair comes up from one side and meets the hair on the top and it stands up in a wave. I trim around his ears and his eyebrows so he looks somewhat groomed. I scratch his head and he loves it. He almost purrs. I rub his neck and back as well as I can while he's in the chair. He always tells me how strong my hands are and how sweet I am and how much he loves me.

His fingernails are dirty, but I wait until I can get him at a good time to do that. Today was not a good time.

I asked about his mouth and he said it was sore, so I had him put his dentures in a cup and I cleaned them. I put oragel on his gums using my finger because his finger is dirty. Also, I'm not sure he does a good job. I tried to get the oragel to stick, but with all the saliva, I'm not sure it did. I cleaned and re-lined his dentures with some felt-like liner. I put them back in his mouth but he couldn't tell me if it felt better or not.

I took him outside for a little while on the patio. It was the first nice and warm day for a while. He listened to old radio programs on my ipod. Now that I think about it, it's a little joke: Old radio programs on an ipod. When I got ready to go home he said he wanted to go to bed because he would be lonely when I left. It breaks my heart.

Amos 'n' Andy Save the Day

My ipod has 4 episodes of Amos 'n' Andy radio programs from the 1950's. Dad really does get a laugh out of them. I put the ipod on him when I got there and turned on those programs. I like it when I see him laughing.

I Don't Visit on Weekends

My sister said he was still in bed when she went to see him Saturday afternoon. He really loves to see her, but he didn't rally himself to have a conversation. That is so sad because it shows that he's depressed. He is a person who loves to talk. He will relish some juicy tidbit of gossip about someone in the family. He loves to joke about some of the romantic relationships that my brothers or sister or his grandchildren are involved in. With a large family like ours, there is always family gossip to hash over.

I don't think anyone went to visit him on Sunday. We had a family birthday party, so the family was all there. Whether or not Dad knew that no one was there is something I wonder about. How did he spend the day?

He says that so many thoughts come and go. He will say that he's only a shell of what he was and he can only get through the day by talking to himself, using all his philosophical resources. I know it must be terrible because he is not senile. He knows that he's going to probably die there without ever walking out of there again. That does suck.

Dad looks like a little shrunken rag doll

I push Dad across the street from his convalescent hospital to buy a Mexican Coke for him. They have real sugar, not the high fructose corn syrup we get in the American product. He still loves his sugar. I'd like to be able to talk him into drinking something that would help hydrate him, thereby helping his elimination--he does suffer so terribly from constipation, but I get tired of fighting.Whenever I give up trying to help, I realize that I've conceded the fact that he's actually dying! Why fight with a dying man? What pleasures does he have? Up until about 6 months ago, he was still reading books.

My brother Mark still brings him books that he thinks Dad will like. Well, he would like them if he could still concentrate, still focus well enough to read a page and turn it before he forgot what it was. Actually, thinking about it, I do that a lot myself. I'm getting older and my younger brothers and sister even show signs of aging. We are all saying that Dad has taught us so much and is continuing to teach us even though he doesn't realize it. We know we don't want to wind up like him, in a convalescent home.

His heart seems to be healthy and also he has no kidney or liver problems that we know about. He is taking no medication, if you can believe that! A 96 year old man and all they have to give him is a stool softener and vitamins! It's a real testament that eating all the wrong things isn't what necessarily does you in. What's killing him is his attitude. He always has had a terrible attitude about following the dictates of health "experts". He acts like he thinks it's a conspiracy to make you give up being happy. Right now it's impossible to get him to discuss that he should drink water or juice, or maybe try to eat veggies to get some fiber, or try to tell him to raise his arms above his head to give his shoulders some movement! He gets nasty, even vicious.

His right hand has been unusable for more than 6 months, so we really have no hope of it getting better. At first he complained that it was sore, and indeed, it was swollen. He had it x-rayed first by someone who came into the facility where he's staying. They said he didn't have anything wrong with it. After the problem persisted a couple of weeks, he was taken to a doctor who x-rayed it and said he had a small stress fracture in his metatarsal. We were happy to know that actually something was wrong and it wasn't totally psychosomatic. He wore a brace on it for about three weeks. It was x-rayed a third time and they said it was healed. Nothing was wrong now except for the way he wouldn't even try to use it. No entreaties, no threats of future atrophy, no pain killers, absolutely nothing helped change his idea about that hand. He held it down in his lap, and now I believe it is frozen. He strenuously objects to any attempts of anyone to touch that hand. So, forget about him walking again.

When he first went into CV, he would be given a daily walk in the walker. Someone would help him take 15 or 20 steps, sit down, and then walk back. That seems to be totally in the past now and the future looks like he'll die in the wheelchair.

It was really hard to leave him today because it was relatively early. I couldn't imagine what he was going to do the rest of the day. TV is no longer any diversion and reading is out. I had to go though, and he asked to be put back to bed. Poor Dad. It was only three in the afternoon and he went back to bed.

How is Dad today?

That is always the question.
It's Friday. I'd like to be doing anything else, anywhere else. I'm at CV where my dear old dad is residing. He's been here about 14 months. He walked out his long driveway to pick up his newspaper and fell down in the gutter November 30, 2009. That was the beginning of the end.
My wonderful brothers and sisters all come and visit Dad. When we talk to each other, it's always, "How was Dad?" Today, I'll have to say, "Not so good." I've been here about an hour and a half. He hasn't spoken very much. I gave him a banana and he said he'd like some pomelo. I brought a huge pomelo with me today. He was in the activities/dining room with many of the other residents when I arrived. The pomelo was admired all around. I allowed Patsy, blind from diabetes, to feel it. Linda, a young-looking stroke victim, unable to speak, asked for a piece. Patsy wanted a piece. I gave the first piece to Dad, that was an hour ago. It is still sitting in front of him.

So, Dad is not too well today. His poor right hand is very swollen. What can be done about it?

He turned 96 on November 2, 2010. That is a very long time to live if you haven't taken good care of yourself. Dad used to live on ice cream, hot dogs, canned spaghetti, bologna and white bread. If he's on the wagon, he would drink Coke and coffee, otherwise whiskey and beer.

How long will he live like this? He has lost so much weight over this last year. Right now he weighs less than I do. Sorry to say that I've gained as much as he's lost, so I'm probably over 135 pounds and he's for sure less than that.
He still has moments where he's the good conversationalist, the compassionate humanist, the literary quote meister, and delightful friend that we remember. He always had the appropriate quotation to help you through a situation. Dad could always make us feel better. He's an armchair philosopher and a satirist. He gave us pride when we were dirt poor. Just to be one of our family seemed like a great stroke of luck. We thought our family was the best.