The grilled cheese

His appetite has been pretty non-existent for the last few months. His weight was up and down for a while, and then stayed on the “down” side.  We started giving him Ensure, protein bars and whatever else he would eat just to keep some calories in him. We go through about 4 boxes of Honey Buns in a week, but most of the time he eats like a bird.

Lately, he’s been asking for a lot more. We give him a measly portion at dinner, thinking it’s all we’ll be able to get in him, and he comes back for seconds and even thirds sometimes. He had 4 slices of pizza not too long ago, which is HUGE.

Last night, Stephen decided to make a delicious treat I had seen on Facebook. Bacon wrapped grilled cheese sandwiches. Granddad was in bed (he sleeps a lot now at random times) so we made our own food thinking he wouldn’t be up anytime soon. However, the smell of bacon got to him I think.

He came into the living room, sat in his armchair and stared at Stephen. This was his way of asking for a sandwich. J

We sat and watched him eat his grilled cheese. He looked like a happy little child. He was eating it so fast, the cheese came out everywhere and he was struggling to keep up with it. He couldn’t seem to bite the cheese off, and so it kept drawing out like loose taffy from the bread to his mouth. He looked content. I won’t say happy, but content. It was the first time I had seen him really look like he was in a peaceful state of mind and he was enjoying himself.

I watched Stephen, too. He kept smiling and chuckling at his granddad. I think he felt joy. I think he was happy that granddaddy seemed to be so into his dinner. There was finally something he could do to make his granddad not miserable, even if it was as simple and brief as him eating a grilled cheese sandwich.

…and then he asked for “just another half”. J

The green chair by the door

He sat in the green crushed velvet chair by the door. He had his face in his hands and he was staring at the floor. He didn't move for about an hour. When we tried asking him what was wrong, for the first few minutes he couldn't even reply. He was trying to hide the fact that he was crying.

When we finally got him to tell us why he was so upset, he told us he was worried about David. You see, his hallucinations are a permanent part of his reality now. Sometimes he confuses seeing us around the house with the characters in his mind. He thought he had seen David in the house, and was now worried because no one (we) could tell him where David went or when he had left. "They just up and left without saying a word!"

He feels abandoned most of the time. He remembers loved ones in long-ago time periods. He forgets that the loved ones he's searching for are dead, and the loved ones he has here with him he doesn't know at all. I feel like he knows we've been around for a long time, sometimes he even makes comments about knowing Stephen his whole life. But he doesn't know why, doesn't know who he is and if we try to tell him it's his grandson, he laughs and looks at us in disbelief. Stephen, when he remembers him, is still just a little boy. Which is why a few nights ago when he said my name, it almost made me cry.

Everything about this is unbelievable. It's all so surreal and we're almost to the end of the road. There is no way to learn to cope with this. It will haunt us for a time, I think. Maybe it will always haunt us. I have felt so guilty. I have become numb. I learned to turn off my compassion and go through the motions mechanically. I used to cry every night, every time he mentioned Grace, every time he looked at Stephen and asked him for his name. At some point, you have to turn it off. If you don't, it will kill you. I swear to god, the suffering you watch an Alzheimer's patient go through will kill your spirit.

I'd give up anything to reverse life's fucked up sentence on him.

The birthday spanking

It was my sister’s birthday. Her Fiance’ planned for us to go out to a nice steakhouse with his parents, our whole family and a couple of their close friends.

MIL and FIL (as usual on birthdays and other important dates to us) were unable to watch granddad, so he came with us. He sat with my brothers, like he has every birthday dinner, and they goaded each other and told jokes the whole time. We had so much fun, and so did he. He kept saying "This is the most fun I've had in I can't remember how long!" Just like he does every time we went out and did fun stuff with him and my family.

Granddad loves red wine, in case I’ve never mentioned that. I mean, he LOVES that shit. So, of course, we ordered him a glass with his steak (which he also LOVES).

I was worried about him getting drunk and sick, so I decided to limit his alcohol intake. When he started asking for more wine, I ordered him a HI-C punch and asked the waitress to serve it in a wine glass. Much to my surprise (and no one else’s) he knew that was a glass of bullshit when he exclaimed “WHAT THE HELL IS THIS?” upon its arrival. That was a funny moment of truth.

You can’t fool a man when it comes to his drink.

What I didn’t know what that night he had already gotten little toasty and slapped my sister’s butt as she bent over to hug someone in front of him. When she turned around to see who it was that had smacked her, granddad sat there with a smirk, and with no hesitation, pointed a blaming finger at my dad sitting next to him.

His sense of humor has never died. I’m so thankful for that.

Counting days

Granddad is getting worse on the daily. He fell and cut his arm about a week ago now and it is still bandaged up, blood seeping through every couple of hours. It’s scary to think about getting older. You become so frail, and broken.I wish we could alleviate his stuggle.

He was talking about David again last night (his youngest deceased son). He kept seeing him walk through the house and would try to follow him, only to open the door to the front bedroom and find our dogs inside, tails wagging. No David.

He started getting frustrated when Stephen told him it was just us three in the house. It’s not the first time he’s hallucinated, but he was pretty adamant about David being there.

He finally went to bed a little after midnight and all it took was me walking by his bedroom to get him out of bed, off looking for “the guy who just blazed passed” his room.

This is the week he is supposed to go to a facility. We’ve been waiting for this to happen, not because we’re tired of taking care of him, but because it’s no longer safe to do so. I don’t know if it’s all an earful of smoke. I don’t know if he will actually go anywhere or not, and at this point, I’d almost rather he didn’t. It feels like the end is so close, I just want him to lie down in his comfy bed after a dinner with people who love him and dream of Grace. I want so much for his dignity to be preserved.

None of this is fair. This is fucking bullshit.

Early birds

It's currently 6:15 a.m. and I have been up since 5:30. I found granddad in the family room talking to someone named George and Jackie. Hallucinating.

Then he went into his office and started pulling everything out of the filing cabinets.

He's still there. Rifling through old papers he doesn't even understand.

This is so frustrating.

Dark days

Today isn't a good day. We've hit a new low. The time feels like it's slowing down on the cusp of an impending doom.

I wish there was a way to preserve his dignity. Maybe it's a blessing in disguise that his memory wanes as much as it does now.

He said "I'm dying. I've seen people die before and they weren't as bad off as me. If Grace were here, this never would have happened."

The lucidity in his words is the most upsetting thing. The detachment I'm guilty of is what is the most unsettling thing. It's hard not to retreat from the gravity of the reality you face when caretaking in this type of situation. It's hard to stay emotionally present.

It's hard feeling so much. Not as hard as watching granddad struggle though, and there isn't a thing you can do to help him.

He damn sure doesn't wear sunscreen

Granddad loved to be on the water. He taught my husband to fish when he was a little boy. He had a boat they would go out on, or he would drive down to the little park near his house and they would fish in the pond there. They even had a beach house they frequented when the kids were younger. Not too long ago he kept asking about the beach house and when we told him it had been sold a long time ago, with much regret he said “Why did we ever do it? Why did we sell the house? We had so many good times there”.

With all of his talk about being on the water, we decided to take him to the river and get him on a boat. It was my dad’s birthday and we all got out on the water. The sun was bright and high in the sky, the water was as cold as an icebox, the manatees were making friends with us, the kids were laughing, and the boat motor kept leaving us stuck in the middle of the river. This all made for a pretty interesting trip.

When we weren’t being towed by my brother’s boat, granddad was yelling at the boys to “Stop messing around and get down the river”. He really liked going fast on the water. He also really liked the girls in bikinis.

What he did not like, absolutely not one bit, was me trying to put sunscreen on him. His skin is fragile and his head is bare and all I could think about was how bad it was going to be trying to treat sunburn on his poor little body. So, after his refusal to put it on himself, I had some stealthy moves to pull. Every time he would turn his back to me, I’d spray the top of his head. I’d get an arm, another arm, his neck…and every time he was turning side to side trying to figure out where the mist was coming from. Finally, he caught me dodging him and said (with a bit of gusto) “You wanna get knocked off of this thing?!”

After we all laughed hysterically at his (anything but idle) threat, I settled for the job I had managed to finish and we enjoyed watching the kids splash in and out of the water.

That was by far one of the best days we ever had.