My life is far from normal. Living with Jack makes every day an adventure. I’ve gotten better at navigating his ups and downs and his changing abilities. I take things in stride more easily.

On the flip side, however, this way of life has become the norm, so much so that I sometimes forget what a ‘normal’ life is like. I view most things through the lens of dementia now. This point of view has evolved from the day to day realities of dementia, so I accept that it’s part of my life. But once in a while I need a reality check.

Everything Jack does is caused by his dementia. Sometimes I forget this. He still has days where he seems fairly lucid (he is lucid in a different way now, if that makes sense). The difference is, this lucidity is paired with an almost complete lack of comprehension. It is this part that is hardest to get used to.

Like school. When Jack was well he always wanted me to go back, but we didn’t have the money. Now that we have the money, he isn’t well enough to celebrate my going back. Nor does he get, at times, that school costs money. So he has accused me of stealing his money and playing games with him. And no amount of trying to explain makes any difference. His brain no longer gets it.

Jack’s latest version of reality is, I’ve given up on school. I’ve wasted all that money for nothing. All the school did was take the money and run.

I spend all my time working, he accuses. He ‘never sees’ me studying or going to class. If I don’t get busy, they will throw me out. I will never get anywhere, and we will be stuck here forever.

Jack doesn’t see the balance I maintain. My weekdays are for work; my weekends are for studying and homework. Sometimes I’ll catch a class during the week when dinner is done. But that doesn’t happen often. After a day of working and caring for him, I am usually too tired for school.

Jack no longer gets the concept of time. He thinks that after one class I should know everything and be making tons of money. He doesn’t understand that I’m trying to cram a two year program into six months. He wants results RIGHT NOW, and when he doesn’t see them he thinks I’ve given up.

Which means he rides my butt constantly about ‘getting busy with’ my classes. He doesn’t see all the work I’m putting into them. He sees me sitting there looking at my phone and he thinks I’m ‘playing’. And no amount of explaining gets through.

I realized yesterday that my trying to help him understand is the norm. I try all kinds of ways to get through. This is not a bad thing. But when he doesn’t get it, we both think there’s something wrong with me.

If Jack was well, he would see things just fine. If he didn’t have dementia, I wouldn’t HAVE to explain everything over and over again. He would instantly understand everything I was doing and know that it takes time. Since he has dementia, he’s not going to get it no matter how much he wants me to explain, no matter how many times I try.

This realization is both sad and freeing. I am sad because he relies on me to help him understand, and he feels I’ve let him down when I can’t. It is freeing because I now see that I’m not wrong when I can’t help him to see things. He’s just not going to. And that has nothing to do with how well I explain.

Today hasn’t been fun. The Wi-Fi installation was held up by an inaccuracy in the company records, which said that someone else was already using it. I bought extra data for my phone so I could do my class, only to realize that said class began at 2:00 East Coast Time, not 2:00 WEST Coast Time. I logged on at 2:00 West Coast time and couldn’t figure out why it wasn’t happening. All I can say is DUH.

But it’s been that kind of a day. I woke up with a cold this morning, and I’ve been achy, tired and cranky. Which means my normally legendary patience…isn’t. Which means Jack’s dementia has gotten on my nerves. Which is not his fault. But it hasn’t helped that he’s asked me, “Are you still sick?” almost every hour. He doesn’t understand why a cold won’t disappear even though he wants it to.

I managed to stay calm through the morning, although Jack’s paranoia was in full force. (He insisted that the reason we couldn’t get the Wi-Fi was because “those people over there” were stealing it). I held my tongue when he gave me the attitude for being sick. I even stayed quiet when he said, “If you’re going to be lazy, you can get up and do the dishes.” But at lunchtime, as I was putting the meal together, I tripped over his feet and almost fell on my face. And an entire morning’s stifled impatience exploded in a roar.

“Would you get your f—ing feet out of the aisle?” I barked. Yep. I actually said the ‘f’ word. And there was no way to take it back.

Jack looked hurt. He got up, limped over to the bed, sat on it and sulked. “Leave me alone.” he said. “I’m going to go live somewhere else.”

“Go ahead. You won’t get taken care of the way I take care of you.” I retorted. I heard myself saying the words and was shocked. This is not how I normally talk to Jack. But I couldn’t stop the words from coming out.

I took a huge, deep breath. I said a prayer. I asked God to help me stay patient. I stayed quiet for fifteen minutes as I finished fixing lunch.

Then I went to Jack, who was still sitting on the bed and rubbing his foot. I hugged him. He leaned his head into my chest. I kissed the top of his head. “I’m sorry darling.” I told him. “I won’t do that again.”

Jack looked up at me, puzzled. “Do what?” he asked.

It was one of the rare times I was grateful he had dementia.

It has been a challenging morning. Since I’m home, Jack naturally assumes that all my focus will be on him; and he acts accordingly. He is like any little boy who wants mommy’s attention 24-7.

Perhaps unlike any little boy, Jack gets unduly anxious if I am not focused on him 24-7 when I’m home. If I sit down with my journal, or my paintbrush, or a class video, I have about five minutes’ peace. Then the questions begin.

“Whatcha doing?” Jack wants to know, coming over to the table as I’m trying to paint a wave. When I explain, he says, “You can’t paint. You’re not him.” He is referring to the person in the YouTube video that I’m watching, who is explaining how to paint waves. I ignore the remark and put brush to canvas again.

Ten seconds later, Jack is back. “You’re supposed to be doing your school.” he says, a familiar edge to his voice. “Don’t waste your time playing around.” I make some noise to show him I’m listening. I keep painting.

Then Jack amps up the drama. He starts rummaging through some of his things and unearths three “gold coins”. They are Sacajawea dollar coins, but he thinks they’re real gold. Now he has a crisis on his hands because he ‘only’ has three.

Where, he demands, did the rest go?  He knows he had more. There is only one possible answer.

“Somebody stole them.” he declares, as he slumps on the bed, the picture of dejection. “You need to help me right now. My coins have disappeared!”

I put the brush down with a sigh. “No one stole them, dear. You put them with the rest of your coins. They’re right up here.” I point to Jack’s latest hiding place. He is not reassured.

“Show me.” he demands. I get the box down and hand it to him. Then I sit down to paint some more. But my concentration has been broken, and I can no longer focus. I give up and put my paints away.

But Jack, for the moment, is happy because he has my full attention. He sits on the bed, looking through “all of my gold and silver” and showing me each coin multiple times. “Look at all this gold.” he says, holding up a handful of coins. And then a second handful. “Look at all this silver.”

All the “gold” coins are Sacajawea dollars. All the “silver” coins are half dollars or ‘silver’ dollars. They have no real value beyond their denomination. Fortunately, I bite my tongue before I tell him that.

The coins, to Jack, are priceless treasures, treasures that can someday buy us a ‘real home up on the hill’. They are to be hidden away and zealously guarded so no one can steal them. They are the means by which we will have our freedom. They allow him the freedom to dream.

Maybe there’s a lesson in that. Maybe instead of seeing them as coins with little value, I should see them as Jack sees them. Maybe, instead of taking a practical view, I should view everything as treasure.

It is something worth thinking about. Especially now, when Jack senses my attention has wandered and he’s insisting I look at his coins again. My time with Jack should be treasured, not lamented. I will have plenty of me time later.

Sometimes I hate caregiving. This is something I have never shared with anyone. It is the dark secret that usually stays in my journal. This morning, though, after talking with a caregiving friend who ‘totally got’ the ‘dark secret’ part, I realized I needed to write about it. It is something people need to hear.

Sometimes I hate caregiving. This does not mean I hate Jack—far from it. He is the man I love and always will be. The part I occasionally hate is being a caregiver twenty four hours a day.  It is a never ending job that takes all my energy.

I used to be a sociable person. Now I seldom have the energy to interact with people outside of work. It’s not that I don’t want to; I am usually too tired. There is no recharge time in caregiving.

I used to go to church. When Jack said he didn’t want to go any more, I was relieved. I like church, but I dreaded having to be upbeat and sociable when I didn’t want to be around people. Now I use Sundays for shopping and homework. It is my one ‘rest day’ before I go back to work.

I don’t usually share this with anyone, because ‘normal’ people are quick to tell me that I need to put Jack away somewhere. They say I shouldn’t have to deal with this. As well intentioned as this statement may be, it isn’t what I need to hear. It doesn’t take Jack or his needs and wishes into account. It reduces him to a problem that can’t be fixed, one that is better left behind.

There are days I dream of freedom. There are days where I wake up and feel like I can’t face the reality of what my life has become. It sometimes takes more energy than I have to get up and start the day. It is the knowing that Jack needs me that gets me up and moving. His world is crumbling around him and I’m his only anchor.

I hate caregiving sometimes. I hate the dementia and what it’s done to Jack, what it’s doing to Jack. I would love to be free of that burden at times. But that would mean giving up Jack. And I am not ready for that.

I have been immersed in dementialand for several days, trying to make sense of where Jack is. I can usually get a clear idea as I listen and ask questions. But this time I’m not having much luck.

For three days, Jack has been talking about looking for a house. It is, he says, a house he saw ‘before’, when I was ‘busy fixing the cat’. He tells me he talked to a man who was tired of taking care of his house and wanted to give it to us. He (meaning Jack) doesn’t remember the man’s name or where he actually saw him. He never got the man’s name. He doesn’t know where he lives. But the town, he says, was ‘where we first started here’. Sometimes that means Westport; sometimes it means Port Angeles. I haven’t been able to make sense of his ‘memory’.

Jack wants to find the house RIGHT NOW, before we lose it. He says repeatedly that we have to get a ride to this house, to talk to the man and tell him we want it. It’s not that far away, he insists. He would know it if he saw it. It’s “right on the top of the hill”. We could walk there, but it’s easier to get a ride. I need to ask someone to take us there.

“You never want me to have anything.” he accuses, when I don’t run right out to find us a ride. “It’s always about YOU and what you want.” He storms off in a huff, leaving me wondering how I can understand. How can I find a way to make things work?

In Jack’s mind at these times, I’m the enemy. I don’t want us to have this house. Or I don’t believe him. Or I don’t care. I’ve heard all of these several times and the words hurt. But there is no point in answering. All I can do is keep trying to understand.

“I wasn’t there.” I finally said today, when he again got mad at me for not remembering. “When you were talking with this man, I was busy with the cat. I don’t know enough about what happened to help you. I wasn’t with you when you talked to him.” It was a shot in the dark, but I’d run out of answers. “I can’t help you to remember when I don’t even know.”

And somehow that got through. Jack told me more of ‘what had happened’ that day, But as I asked more questions, the story kept changing. I knew there was truth in it somewhere but I didn’t know what it was.

Jack didn’t remember the man’s name. He never knew the man’s name. There was going to be a house, but it wasn’t built yet. The man had the land and it was ‘all filled up’. There was no house. But… “There’s a place where you can buy ice cream. The girls run it.” Jack said. “That’s what you and I could do—we could sell ice cream. It would be perfect.”

He wasn’t sure where the man lived, but it wasn’t here. It was “where we started here”. It was “up on the hill”. He needed to look for the man to tell him we wanted the house. It wasn’t that far away. If we walked long enough we could find it. The man was working on the blueprints and would build the house just for us. But we needed to go soon.

“If you don’t want to go with me, I’ll just have to walk there myself.” Jack said, as we ate dinner. It was a challenge I didn’t know how to answer. So I took a deep breath and said, “If we’re going to walk there you’ll need to get used to walking longer distances first. Why don’t we take a walk around the campground after dinner and you can see how you do?” Jack’s face lit up and he readily agreed.

It is not a real solution. At the moment I don’t have one. But Jack knows, at least for now, that we’re on the same side. I have no idea what will happen next.

We are sitting at the kitchen table. Jack has emptied his wallet and is studying the contents, his brow furrowed. He doesn’t know what anything is for.

“Tell me again.” he says, for the fifth time. “I’m all confused.”

“The brown card is the debit card. The blue card is the credit card.” I explain, also for the fifth time. Jack just shakes his head,

“Can you write that down for me?” he asks. “I need help figuring it out.” I make a list of his cards and what they are for, and I hand it to him. He reads it carefully, his brow still furrowed. Then he reads it out loud, slowly.

I know he still doesn’t understand. I also know the list won’t help. But I won’t tell him that. HE thinks it will help and that is enough. I am willing to do anything if it helps him to feel better.

So much seems to be changing right now, in both good and not so good ways. On the good side, Jack seems calmer and happier. He hasn’t asked to go home for almost a week. He has gone from hating the trailer to feeling safest in it, even if he still grumbles about the lack of space. He has resumed playing with his stones after several weeks of ignoring them.

On the not so good side, he has lost more ground. I realized this last week when he couldn’t remember how to water the plants. I had to show him which end of the hose to use, how to turn it on, how to make the water come out of the nozzle. I held his hand in mine, closed his fingers on the trigger and squeezed. He nodded without understanding and watered the entire patio along with the flowers. I thanked him for doing such a good job.

I also had to teach Jack how to husk corn. I showed him how to peel the “green” off, how to throw it in the garbage, how to clean the silk, how to break the cob in half and put it in the bin. He kept forgetting what to keep and what to throw away. I kept explaining.

And now the cards. This is the first time he has had no clue what they are for. No matter how many times I’ve explained, the light hasn’t come on. I suspect it may have gone out for good.

I am not sad, exactly. I have gotten to the point where I am beyond sadness. I am…I don’t like to say resigned to what is. Perhaps accepting is a better word, accepting what is. My mind is no longer fighting what my heart already knows. In some strange way it makes this new loss easier to bear.

And Jack, in his own way, has just summed up how things will be from now on. When I asked him if he wanted chicken and sweet potatoes for dinner, he just shrugged. “I don’t care anymore as long as you feed me.” he said. I swallowed a sudden lump in my throat and got up to light the stove.