I didn’t think I would write another post so soon. But today has been frustrating for several reasons.

I am learning yet again that pretty much anything I do for Jack is going to be up to me. A few days ago, I sent an email out, asking for information about adult day programs, being paid for caregiving, and suggestions on any avenues I might pursue to make life easier for Jack. I got an answer tonight, and I want to pull all my hair out.

For starters, there is no adult day care in this county. That’s right—none. The only program is in a different county, and Jack isn’t eligible since we don’t live there. Since we are a small town, we are—how did she put it?—underserved.

There is a senior center here in town, and they do lunch three days a week. But “they don’t do anything besides lunch”. All I would have to do is find a ride. I would probably have to go since Jack won’t go without me.

I can’t get paid to be a caregiver since the state is already paying for caregivers. A spouse cannot be a paid caregiver. I don’t know why the heck not, since I do more caregiving than anyone who comes in.

The paid caregivers, according to the email, are supposed to do things like dishes, laundry, cleaning, and helping Jack take care of himself. If they haven’t been, I should call the agency. But I’ve been told by the agency that those first three things are “gray areas” since Jack is married. He could get help with HIS laundry; but how do you sort out HIS dishes? What parts of the trailer are considered his? I would laugh if I didn’t feel like banging my head against the wall.

Jack’s care people normally take him out so I can get the cleaning, etc. done without being interrupted. But I’m out working during the week, so the cleaning doesn’t get done then, unless it’s raining. So cleaning is often reserved for Sunday, which is also shopping day. Know how much I feel like cleaning after I’ve been shopping all day?

I know I should be grateful for the help we do get. I AM grateful for it. My frustration stems from running into walls every time I want to make Jack’s life better. I haven’t been able to do it all myself.

There are certain things I’d like to give Jack that I haven’t been able to. I’d like him to get out more, to socialize more, to have things he looks forward to. But it looks like I will have to figure out how to get creative and do it all myself. I don’t see any other way to make things happen.

It has been an exhausting week. Jack has been having a period of lucidity coupled with zero comprehension, which can be more trying than anything else I deal with. When he is like this, he wants me to explain everything in minute detail. But he doesn’t understand the explanation, no matter how simple. Then he gets frustrated and paranoid and accuses me of playing games. I get frustrated trying to explain, which makes things worse.

Yesterday I actually had to walk away. I had called the bank to transfer money from the savings account to the checking account. Simple, right? Not to Jack. He assumed that I was taking his money away. And no amount of explaining got through. When he started accusing me of playing games, I quit trying. I got up, said, “I’m done.”; left the trailer and went back to work.

This morning it started again. I had called Olympic Area Agency on Aging to get information on several things; and someone finally called back. But I didn’t want to ask my questions because Jack was right there listening. So I asked the lady for her email and hung up. That got Jack’s attention quicker than asking the questions would have done.

Immediately he pounced. He wanted to know exactly what I was doing, why I was “sneaking around” behind his back. “You’re lying to me.” he said. “Why are you trying to change things? You’re trying to put me away.”

“I am asking for information. That’s all I’m doing.” I said. But Jack shook his head.

“I want you to tell me exactly what you’re doing.” he insisted. I took the first of many deep breaths and tried again. It didn’t work. After two hours of him grilling me, he still didn’t understand. I had a massive headache from biting my tongue so I wouldn’t rip his head off.

But that is not hardest part of the lucidity/lack of understanding combination. It is much harder when Jack asks questions that I don’t know how to answer. Like this morning when I had to help him with his shoes, after he’d put them on the wrong feet three times in a row. As I tied a shoelace, he watched me, puzzled and frustrated. “How come you know how to do this and I don’t?” he asked. How do I answer a question like that?

Driving is another one. Jack still insists that he can drive, that “all we need to do” is buy a car. Then everything will be fine. Things will be normal and he will be able to take care of me again.

“But I don’t have a licence.” he said later this morning, after he’d finally forgotten about grilling me. “I’ll need to take the test again.”

“We can practice that right now.” I said, picking up my phone. In hindsight, it was one time where helping him was a mistake. But I didn’t want to tell him the truth. “They have the test online. All you have to do is answer the questions.”

“Good idea.” Jack said, leaning forward in his chair. I read the first question.

“If you are driving 300 feet or less behind someone at night, which do you use? Emergency lights, flashing lights, high beams or low beams?” Jack looked puzzled.

“Read it again.” he said. I did. “What are the choices?”

“Emergency lights, flashing lights, high beams or low beams.” I said.

“Low beams.” Jack was unsure, But he’d guessed right. We moved on to the second question. I can’t remember what it was now, but Jack had no clue what the answer was.

“I don’t know.” he said, looking anxious. “Why don’t I know?”

I read the third question. I should have stopped at the second one. Jack thought, then froze, looking stricken, his eyes filling. I put the phone down, got up and hugged him.

Jack buried his face in my chest, breaking into tears. “I don’t know anymore.” he said. “It’s all gone. Why can’t I remember?” I just held him. I don’t know how to answer that question yet.

This is most when I feel like I’m walking a tightrope. What do I say when Jack wants to know why he can’t understand things? Do I answer truthfully and take away his hope? Or do I lie, pretending that things are still normal, that this is a temporary state?

I promised him I would always be truthful. What happens if I lie and he realizes I’ve lied? I don’t think that question has an answer.

I have had some light bulb moments this year. The first happened back in the winter when a good friend asked me how I would survive without Jack. I was shocked to realize I couldn’t answer.

The next one, in the spring, was the realization that I didn’t need Jack’s permission to do anything. I had always sought his approval when I wanted to do something, and deferred to him if he said no. When I realized he was no longer capable of giving permission, another light went on. I realized I didn’t need anyone’s permission to do anything.

But the biggest realization happened just a few months ago. I had been wondering how I would survive alone (which happened rather frequently), and it suddenly hit me. I’m already alone. And I’m doing just fine.

I am a solo act. I handle the finances; I pay the bills; I make all major decisions; I do the trailer maintenance. I work; I cook; I do laundry, shopping and cleaning. I do everything that a single person does. I just happen to be caring for someone else while I’m doing it all.

I have been alone for a long time. This realization, hard as it was, was the catalyst that made me really start thinking about my future. What did I want it to look like? How would I support myself? What were my dreams? Did I even have any?

It was the first time I’d dared think about a life without Jack. The realization that I could create my future any way I wanted to was a revelation. For the first time ever, I could build a life that I wanted, one that would reflect who I really was. I could do it after he was gone. I’d never had that opportunity before.

But why wait until he was gone?? That was the next question that occurred to me. Why not build the foundation now, while Jack was still here? I was essentially alone anyway, and I didn’t need his permission. Why not do it now and make the transition easier?

I’ve done a lot since then. I’ve gone back to school full time to learn web copy and web design. I’m building a vision board about how I want my future to be. I have even started taking care of myself now by eating better and making time to do things I love to do. I am working intensively on my own healing too. I have put myself on my own to do list in ways I never thought possible. And I have put myself at the top.

This does not mean I have stopped loving or taking care of Jack. When he goes I will miss him terribly. But in a lot of ways he is already gone. The dementia took him away a long time ago, and he is not my husband any more.

I would never wish dementia, or caregiving, on anyone. It is a brutal and exhausting way to live. But Jack’s dementia has freed me to be myself, which is a blessing I will always be grateful for. I just wish he was here to celebrate with me.

The post I wrote earlier today was not the one I planned on writing. This one isn’t either. But I need a place to park things, and at times this is the place. It is easier than trying to write in my journal with a flashlight.

Jack is already in bed. He is sensitive to light now. He wakes up at sunrise and goes to bed as soon as it gets dark. His average bedtime is between seven thirty and eight.

I don’t like going to bed this early. But if I don’t go to bed with him, I have to wake him up later so I can get in. Waking up someone with dementia, I’ve learned, is a dicey thing. He is just as apt to wake up fighting as he is to welcome me into the blankets. So I go to bed when he does. It is easier that way.

That doesn’t mean I go to sleep, however. I am more apt to watch YouTube or check out a few Facebook posts until I start dozing off. Some nights, however, my brain doesn’t shut off, and the only way to settle it is to write what’s inside it. Tonight is one of those nights.

During the day I can push certain thoughts away. My days don’t allow much time for thinking, which is often a good thing. At night, however, when things are still and Jack is sleeping, my brain wakes up. All the thoughts I’ve tucked away come out for an evening stroll. This is not what I want when I’m trying to go to sleep.

Tonight my brain is pondering things that have no answer. Like, why did this happen? We came all the way across the country to start over, to build a new and better life. We dreamed of everything we would have and do. We had long conversations about our future, what we wanted it to look like. Why did it go so wrong, just when we were starting to turn our lives around?

Dementia wasn’t supposed to be a part of our lives, especially not after we’d learned to be husband and wife. We went through a lot of learning to become partners. A team. We decided things together; we planned our future together; we dreamed together. We learned through the hard times what really mattered—each other. By the time we left CT, we were partners and soulmates, ready to start over together.

We thought we would have many years together. We thought we would rebuild and go on to do greater things. And we were getting there. We had a new place to live, awesome jobs, and our own (admittedly small) home. We were building ties in the community. We were free of the financial stresses that had plagued us for so long. For the first time in our marriage, things were going well.

And then they fell apart again. Jack was diagnosed with Frontotemporal Dementia. We left the doctor’s office that day, determined not to let this thing wreck our future. How innocent we both were.

So now I sit here, wrestling with a why that will stay unanswered. My rage and sadness at the unfairness of it all won’t change what has happened—I must learn to make my peace with that. And I will. But it comes slowly. And on nights like this, as I sit in bed, listening to Jack breathe beside me, the enormity of what we have lost comes out to have its say. And all I can do is let it speak.

Jack is bored this morning. He is complaining there is nothing to do. But he doesn’t want to DO anything. None of my suggestions interest him.

“Would you like to watch a movie?” Nope. “How about coloring?” No. “Would you help me with the laundry?” Jack laughed so hard I thought he’d fall off his chair. “How about going for a walk?” No. It’s too cold and it’s going to rain.

I have run out of ideas, for the moment. And I don’t have the energy to keep him entertained. After a full week of working, I’m tired. I don’t even have the energy to tackle my own to do list.

So we are at an impasse. Jack is demanding my attention, wanting me to find something for him to do. But he is rejecting all of my ideas, preferring in this moment to pester me like a hyperactive two year old. I can see I won’t be getting much done today.

Now Jack is looking through a coloring book about fairies, telling me a story for every page. He is singing the story instead of talking. He is my happy little boy, at least for now. It is a good first step.

Perhaps I can coax him to color a page for me, one that I will tear out and hang on the wall. Then it will be lunchtime. After that, he will probably nap. That will give me time to come up with something to keep him busy until dinner.

There is no simple answer. In the trailer’s limited space, there aren’t many options. Once my new tablet comes, I will have games and other interactive things on it to keep him busy. I can stream movies and tv. I will have Skype so he can talk to people.

But the tablet isn’t here yet. I still have to get through today.

My husband is gone and I don’t know when he left.

I don’t mean gone physically. He is still here, next to me in bed, snoring gently. The body is the same. It’s the person who inhabits the body that has vanished. For some reason I never realized that.

I still think of Jack as Jack. I still think of him as my husband. But I need to see him differently because he isn’t my husband now. I am viewing him through the lens of who he used to be. And that is hurting me.

My husband would never call me names like “bitch” or “c_nt”. Jack has done both. My husband would never accuse me of stealing his money, playing games, cheating on him, trying to make him crazy. Jack has done all of that. My husband wouldn’t sit there, expect me to wait on him hand and foot, and get mad when I didn’t do it fast enough. Jack has done that. My husband wouldn’t hit me. Jack has, twice (this was more than a year ago). It’s part of his dementia. I understand that.

Lately Jack has been saying how unhappy he is. He wants to go home, he says. He wants me to stop working and stay with him all the time. He doesn’t understand why I have to work so hard. I’m not moving fast enough to get us out of here.

He wants me to help him understand things. But lately, no matter how many times I explain or how many ways I try to explain, I’m not getting through. “You need to try harder.” Jack says at those times. “You’re supposed to help me!” He doesn’t understand why I can’t. He thinks I’m not trying hard enough.

For some reason, I never thought of these words as being part of his dementia. I thought of them as my husband’s words; therefore they were true. It was my fault that he was unhappy. I wasn’t doing enough fast enough to make things better.

I couldn’t make him understand. I felt guilty because he wasn’t getting it. He blamed me and I agreed. I wasn’t trying hard enough.

This ‘not doing enough’ was a weight on my shoulders for more months than I care to think about. I was constantly trying to figure out how to make it work. What else could I do? What new thing could I try to help him understand? How could I keep him busy and happy when I wasn’t there?

Tonight, reality whacked me upside the head. I was journalling, wondering what else I could try to make things better, and it hit me: I can’t. No matter what I do it won’t be enough. The dementia is going to progress no matter what I do or don’t do.

The hard truth is, I can’t help Jack understand because he is incapable of understanding. I haven’t failed him even though he sees it that way. The dementia won’t let him understand.

I am not the source of Jack’s unhappiness, even though he says I am. His own brain is, and he can’t control that. I can’t fix it, nor am I capable of fixing it. If I moved him somewhere else like he wants me to, he would still be the same person. Moving somewhere else will not fix Jack.

Jack is gone. I know that now. It is a hard truth to face. I don’t want to face it, especially since I still love him. But facing it will allow me to finally lay down the guilt that I haven’t done enough. The truth is, no matter what I do it won’t be enough.

This realization won’t stop me from trying my best. It won’t stop me from loving Jack, from giving him the best life I can. What it will do is remind me that I am not the person Jack sees. In truth, he doesn’t see me. What he sees is a projection of the dementia. And nothing I do can fix that.