I cleaned our kitchen table today. The table is Jack’s primary ‘dumping station’; if I don’t sort it out once in a while we have no room to eat. So I settled in with some plastic bags and began plowing through the mess.

Jack sat across from me. Usually he watches me work and raises a fuss every time he sees something hit the garbage bag. It doesn’t matter if said item is a food wrapper, a used tissue or a three year old magazine. He will always say the same thing: “I might need that someday!”

This morning he didn’t say a word. When I started throwing stuff out, he paid no attention. He watched me but he didn’t say anything. I don’t think his brain knew what I was doing.

I packed some of his discarded stones into a bag to take them outside. Usually if I do that he will change his mind and insist on keeping them. Today he didn’t say anything. He watched but didn’t see.

I thought of what a friend had told me back when this journey began. “The day will come,” she said,  “where you can sneak around right in front of him. You won’t have to worry about telling fiblets or doing things behind his back because he won’t be aware enough to notice.”

At the time, I couldn’t fathom that reality because Jack was challenging everything I did. But this morning, when I took a candy wrapper from under his nose and threw it out, I knew that day had come. Jack watched me throw it out and didn’t blink.

I am sad because this marks another step in Jack’s continuing decline. It erodes our crumbling partnership still further, reducing it to….I don’t know what. He is drifting farther away from me and I can’t stop his going. Watching him lose awareness of even the simplest things means I am that much closer to losing him for good.

But this new step also means I am freed from the challenge of explaining. I can do what needs doing without involving Jack at all. His insistence on knowing everything while understanding nothing will no longer be an issue, because he will no longer care what I’m doing. His actions this morning told me that.

So I’m relieved. I am also sad, because we always made decisions together. My heart breaks yet again; and at the same time my body is sighing in relief. It is a bittersweet moment that’s hard to describe.

I am free to do what needs doing now, without answering a million questions. I just wish this freedom didn’t hurt so much.

Jack had a rough night last night. He mumbled and thrashed on and off all night. He kept pulling the blankets off me and rolling up in them. I woke up shivering several times and had to pull them back over me.

He had nightmares too. At one point I woke to hear him snarling in my ear. He had my hair in a death grip and his eyes were blank. I knew if I woke him up he would lash out (he does that with his Vietnam dreams) so I talked to him very softly and waited until it passed.

After five very long minutes, his hand relaxed, and I was able to move away and check for damage. No hair loss, but my head is still sore this morning. I am also pretty tired. But that is normal.

Jack is tired too, in a different way. His body is slowly beginning to shut down. He has fluid around his heart; his heart is enlarged; his legs and feet are swollen, and he is in early stage kidney failure. He is moving more and more slowly. He is also sleeping more. Some days he needs a nap so he can digest his food. His body doesn’t have the energy to do that and keep him awake.

He is losing his ability to swallow. This scares me more than most things. His brain isn’t telling him when liquids go down wrong, and he is silently aspirating them. This puts him at a high risk for pneumonia.

He is no longer allowed to have liquids now. Anything he drinks must be honey thick. All solid foods must be pureed, since the tests showed he is perilously close to aspirating them as well. He is swallowing them too soon, and his windpipe isn’t closing fast enough. He is not aware of any of it.

Sometimes I feel weighed down by his care. Keeping him safe while he eats is a huge responsibility, and it takes a lot of time. I have to make sure everything he eats is the right consistency, so it doesn’t break up and go down the wrong way. I make sure I use his “magic powder” that turns all his drinks into milkshakes. I make sure he stays hydrated. I have to balance all this with his fading desire to eat.

In the back of my mind, though, I know that this won’t stop the progression. He will eventually forget how to eat no matter how careful I am. He will eventually have no desire to eat. This is already happening and he is losing weight.

I’ve been told several times that I need to place him, that his care will get beyond what I can handle. I am well aware of this. The problem is, I have also been told by the speech therapist that if I place him he will be at greater risk because he won’t get the same quality of care that I give him. There are not enough people, the therapist says, to monitor his every bite and remind him to take small bites, or to sit with him while he drinks. They wouldn’t be consistent about making sure his food was properly pureed.

They wouldn’t watch him to see if he actually ate; so if he forgot how to feed himself he could go hungry.  He would have a much greater chance of aspirating something and contracting pneumonia, because no one would know if he choked.

I care for Jack, the therapist says, better than any facility ever could. This adds to the guilt I feel when I think about placing him. What if I did that and he choked and no one realized it? It is one of my worst fears. I would have a hard time forgiving myself if that happened.

I watch Jack like a hawk when he eats. I even feed him sometimes now (he’s forgetting how to use a spoon). Who else would care enough to do that? How could I leave his care to strangers, knowing that he would be at greater risk?

The hard part is knowing he is at the same risk with me no matter how careful I am. I can’t win this battle with his brain. At some point he will be unable to swallow regardless of where he is. I can only hope that when that day comes he won’t be aware of what he has lost.

I gave Jack CBD oil for the first time this afternoon. He has been re-living his earliest trauma (his birth mother abandoned him when he was two) for several days now, and he has been clingy, terrified, and crying if he even thinks I’ve raised my voice. He has begged me not to leave him. No amount of reassurance has helped.

So I slipped a dropperful of the CBD oil into his mug of hot chocolate. Within an hour he was much calmer. He sat quietly at the table and played with his quarters. Then Tim, on his way out, reminded him of his upcoming test tomorrow. That set off a round of questions.

“Why is the test being done?” Jack asked. “What will happen? Who said I had to have it? What is the reason for it?” He was on the edge of anxiety again, ready for a fight. I took a deep breath as I phrased an answer.

“Your brain doctor ordered two tests.” I said, speaking slowly to make sure he understood. “He’s concerned because you’ve been having trouble swallowing and he wants to find out why.”

“How long have I had that?” Jack asked, puzzled.

“You’ve had some trouble for a few weeks and it seems to be getting worse.” I said. “He’s set up two tests for you and then we will see him again.”

“What will the tests do?” Jack asked. I explained about the CAT scan and the video swallow test. “They will help to see if something is causing you to have trouble swallowing. If he finds something he will tell us how to fix it.”

“What if he doesn’t find anything?” Jack asked. It was an unexpected question; and I swallowed hard before I answered.

“If they can’t find something, they will show me how to make it safer for you to eat.” I said. I wanted to answer without giving him the truth; but strangely, Jack was having none of it. Maybe it was the CBD,

“What happens if they can’t fix it?” he persisted. I hesitated; but he pushed the issue. “What does it mean if they don’t find anything?”

“It means that something in your brain is making you forget how to swallow.” I said, taking a risk and telling him the truth. Jack nodded, his confusion clearing.

“Then that means I’ll die.” he said. It was the first time he’d ever said those words. I swallowed a huge lump in my throat and nodded. “When?”

“Nobody knows that. But your body will tell you when it’s time. I think it already is.” I said. This last was an intuitive guess, but Jack nodded immediately.

“It is. I didn’t want to tell you.” he said.

“Were you afraid I’d be scared?” I asked. He nodded. “Are you worried I won’t be okay?” Jack nodded again, his eyes filling.

“I don’t want to leave you behind.” he said, his voice breaking. I took my deepest breath ever and put my hand on his arm.

“If you need to leave, it’s okay.” I said, speaking slowly to make sure he understood. “If you leave I will be okay. I will miss you and I will cry, but I will still be okay. You can go whenever you need to.”

Jack nodded, wiping his eyes and blowing his nose. “How do I get there? Where do I go? I don’t know where the path is any more.” he said. I heard the fear in his voice and I squeezed his hand.

“There’s only one path and it’s yours. Nobody can take it away.” I said. “When it’s time, the path will just open up in front of you and all you have to do is start walking. There’s no way you can get lost.”

“Who will help me get there?” Jack wanted to know.

“I will. And your family will too. Remember you told me you talked to your family before?” I said. “You saw your grandma and grandpa, your mother and your two brothers. They’re all waiting for you.” Jack nodded, his face breaking into a smile. Then he sobered again.

“But you won’t be there.” he said, his eyes filling again. He grabbed me and held on tight. “I don’t want to lose you.”

“We’ll still be together; we’ll just be living in different places, that’s all.” I said, trying to reassure him. “All you’ll have to do is think of me and you’ll know exactly where I am. You can visit me any time you want.”

“But I’ll be dead.” Jack said, clearly scared. I shook my head.

“No you won’t. Your body is something you have, not something you are.” I explained. “Do you remember when we talked about this world being the fake world?” Jack nodded. “Your body is part of the fake world so it stays here. It’s the coat you wear as long as you’re here. But when it’s time for you to go home, you take off the coat and you keep going. You don’t need it any more.” Jack nodded.

“How will I know when it’s time?” he asked, repeating his earlier question.

“Your body will tell you.” I said. “You won’t feel like eating any more and you’ll want to sleep more.” I didn’t say that he had already started to do those things. “I think your body’s been telling you.”

Jack nodded. “I’m ready to go home.” he said. Then his eyes filled again. “I’m sorry that I have to go.”

“Don’t be. I’ll be fine.” I told him. “I know how badly you want to go. You can go any time you need to. It’s okay.”

After some more talking, Jack was calmer, so I got up to make dinner. As I turned to start putting food on the table, I almost bumped into Jack, who had come up behind me. He looked at me for a long moment, right into my eyes. Then he wrapped his arms around me, hugged me for the first time in months, and kissed me three times on the lips.

“Thank you.” he said. “I love you.” And just like that, he was gone.

Jack is officially in late stage dementia. My world has come unglued.

It is hard to find the words for how I feel right now. I don’t think I have any. But I feel like I’m straddling two worlds. One is the world of the competent caregiver. The other is the world of the grieving wife.

In my caregiving world, I do what I’ve always done. I feed Jack; I bathe him; I dress him; I coach him through his bathroom trips and do his pericare. I wash his hair. I shave him. I reassure him when his constant shadowing has him velcroed to my side. I play music and calm his fears. I hold him and say I love him many times a day.

I puree his meals and thicken his drinks so he doesn’t choke. And I tell him how to eat. Slowly but surely he’s forgetting how.

I just asked for a hospice evaluation. Jack’s swallowing issues make him eligible for end of life care. This is a hard thing to get my head around. But caregiving demands that I get my head around it. I have no choice, no time to think. Caring for Jack comes first.

By day I am Jack’s rock. But at night, when he sleeps, I crumble and cry. I lie there in the dark, listen to him breathe, think of him not there. My tears crawl down my cheeks and soak the bed. My chest bones ache. My body hurts from holding back the sobs. I don’t want Jack to hear me cry.

I mourn for our old life, for what we have lost. I weep for Jack, for everything he endures. I cry because I want to save him. I cry harder because I cant.

I cry until I sleep. Then I wake, crying done, to don my caregiving coat and start again. There is no room for tears in my caregiving world. In this world, I am here for Jack. He needs me.

I have to be strong for Jack. I have to keep being strong because he has no strength left. He is counting on me to be there, to walk with him until he can’t walk any more. And I’ll be strong, for him. I will save my tears for night. He will never know how much this journey hurts.

I am ready for his journey to be over. I am so not ready.

Jack has started shadowing me. Although it can happen any time, this behavior usually shows up in the later stages of dementia. It is both predictable and frustrating. I am having a hard time adjusting.

Jack never lets me out of his sight. He has to know where I am every single minute. He refuses to leave the trailer unless I’m with him. I can’t even go to the bathroom without him asking me where I am and what I’m doing.

If Jack can’t see me, he panics. If I’m out working, he will come out and find me. If I’m off the property for any reason, he comes completely unglued. He thinks I’ve left him and I’m not coming back.

It doesn’t matter if I’ve just gone to the bank, which is an eight minute walk down the road. It doesn’t matter if I’ve left him a note saying where I’ve gone and when I’ll be back. All he knows is, I’ve left him. And he needs to find me RIGHT NOW.

Jack’s shadowing has changed everything. Before it started, he went shopping with Tim almost every week. I had several quiet hours to put my music on and clean the trailer. I had time to breathe. It was precious time, even if I spent most of it cleaning. I looked forward to it every week.

Now Jack won’t shop without me. My cleaning time is spent shopping. After a day of shopping, making sure Jack doesn’t wander off, having lunch, coming home and putting all the groceries away, I am too tired to clean. So I put it off.

And I keep putting it off, because when there is no shopping to do, Jack won’t leave the trailer unless I go with him. Which means he and Tim sit and watch movies all day. They hang out in the trailer while I’m working (unless Jack insists on knowing where I am). Since we are in the rainy season, they stay in a lot.

This all but guarantees I can’t do anything, because I can’t clean a trailer with two large men underfoot. I can barely make lunch. I can’t boot them out into the rain, much as I would like to, because I wouldn’t be going with them. And Jack won’t go without me.

So I put off the cleaning until it’s just us. But then, Jack needs his weekly bath. Or he has a bad bathroom day and needs cleaning, changing and a bath. Sometimes the cleaning, etc. happens more than once, if he has diarrhea. Then I have to do a laundry run too.

Jack needs to be fed. He needs to be dressed. He needs to be kept busy. He needs me to sit and listen (or redirect him) when the delusions take over. He needs me for everything. He needs, God help me, to know where I am every single minute. Which means he will follow me around this tiny trailer, and—you guessed it—I can’t get anything done.

His dementia has reached a point where he has to come first. I have no choice in that.

Jack’s shadowing is a challenge. Every time I go somewhere, he gets anxious. If he’s not reassured, he gets paranoid. Then he thinks I don’t love him any more. He asks me what he did wrong. He begs me not to leave again. Sometimes he cries because I left him. He doesn’t remember that I always come back.

But Jack is also loving. Shadowing has brought out a sweetness I’ve never seen. He gives me hugs. He kisses me. He tells me how much I mean to him. He asks after my well being so often that it almost drives me nuts. He worries constantly about me. He wants to watch over me twenty four hours a day so I don’t get hurt or sick.

I understand the shadowing. I know why he needs me there. I am the anchor in his crumbling world. I am his safety net. I give him everything he needs: food, baths, safety, acceptance, love. I understand him (or I try to). I am his everything, the one he depends on.

But I can’t stand the shadowing, sometimes. I am worn thin, exhausted, in need of space. I go to the beach for an hour, only to have Jack show up with Tim because he “had to be with” me. Tim has to bring him. Jack panics if he doesn’t.

I want the shadowing to end. I look forward to that day, because I will have some semblance of a life. But I also dread that day, because I know that when it comes, Jack will no longer care if I’m there or not. I want him to care. At least for now.

Everything in life is made up of steps. Before dementia, I never looked at it that way. But now I break everything down into steps. It makes life easier.

Getting dressed is one example. For Jack, this process takes at least an hour. I have to name each item as he holds it up and tell him where it has to go. I have to tell him how to put it on. I have to tell him the right order to put things on. Otherwise he ends up in underwear and shoes and we have to start over.

Jack has six articles of clothing (socks, underwear, undershirt, tee-shirt, pants and shoes). Each one has its own list of steps. I talk him through getting dressed every morning, one step at a time, while I’m feeding the cat, making breakfast, and eating breakfast. We have some really strange conversations.

Sometimes, though, I just dress him. Some mornings no amount of talking gets through.

But this is second nature. I’ve been doing it for months. Now Jack is having bathroom issues. And I’ve started to learn the steps for that.

Have you ever thought about how many steps it takes to use the toilet? I didn’t either. Now I not only have to remind Jack to use the bathroom; I have to tell him what to do (and how to do it) once he gets there. I have to do this every time. If I forget, or I’m not paying attention, the results can be, well, messy.

This week, the sh*t hit the fan. Literally. It was a steep learning curve, but I was saved by one thing: my practice of breaking things into steps. That kept me from pulling out my hair. It kept me patient.

What happened was, Jack had the stomach bug. He had the runs for three days. But he kept saying he had to pee. When I realized that first day he actually had to do something else, it was too late. The bathroom looked like it had been trashed by a herd of cows on ExLax.

As I surveyed the mess, I didn’t know if I should laugh or cry. Then without realizing it, I asked myself what the first step was. My mind automatically broke the cleanup into steps. It was the first time I had done that.

So I put gloves on. I put pads on the bed and floor. I undressed Jack. I wiped him down. I sat him on the bed. I filled a bucket and scrubbed the bathroom, one section at a time: toilet, cupboard, floor. Then I got soap and towels. Refilled buckets and scrubbed Jack. Dressed him in clean clothes. Did laundry.

I repeated all of the above steps twice. I hadn’t learned—yet—to pay attention when he said he had to pee.

But steps saved me. When I broke that massive cleanup into tiny steps, I got through it without stress. I stayed calm and patient. I  reassured and comforted Jack. I told him every single thing I was doing as I was doing it, so he would know what was happening. Steps made those hard days doable.

My next step is adjusting, once again, to the new normals of Jack’s dementia. Right now it feels overwhelming. But I know that as I break this massive task into steps, I can do what must be done. I can do it calmly, patiently, without stress. Steps will help me do it. And I will get it done.

I didn’t choose to be a caregiver. I didn’t wake up one morning and say, “I’m bored. I think I’ll ask God to give Jack dementia so I have something to do.” I was blindsided by his diagnosis. We both were.

I didn’t ask to become the parent for my husband. I didn’t plan to spend our marriage taking care of an adult size baby. But that’s what I was given. I deal with it and make it work as best I can.

Nothing prepared me for caregiving. I learned as I went along. While there is a loose formula to it, so to speak, there is nothing to prepare you for the many ‘firsts’ in caregiving. Nothing, that is, except living them head on and learning what works in that moment. And then learning something different the next time, because what you learned before doesn’t work any more.

No two caregiving experiences are the same, just as no two caregivers are the same. As a caregiver, this was the first thing I learned. I can share what works for me, but I have no right to say it’s the ‘right’ way or the ‘only’ way. That is a slap in the face to anyone who does things differently. It is a disservice to everyone on this path.

As caregivers, each one of us is different. We have our own ways of getting through the day, our unique coping skills, our own talents and mindsets and abilities. We have our own unique breaking points. Unfortunately, the ‘normal’ world tends to view it as a one size fits all model, with a linear progression and a predictable timeline. I did too, until I actually started doing it. I’ve learned first-hand how narrow that perception is.

I am not saying that it’s wrong. This linear view of caregiving arises out of an inability to understand what is actually involved. In the linear version, you start at Point A. Then at Point B “this” happens; then at Point C “this” behavior is observed; and then at Point D you have done all you can and it’s time to put the loved one away. It makes for a nice, tidy textbook package. But real life isn’t like that.

Life is an organic, constantly evolving process. And caregiving is exactly the same. You can visit all the points on the spectrum in a single day, especially when the caregiving involves a loved one with dementia. You could have a day where the loved one has no idea how to use the toilet, can’t get dressed, and forgets how to use a spoon; and then the very next day they dress themselves and use the toilet without a hitch. There is no rhyme or reason to the progression. You just roll with it.

My point here is that I have absolutely no right to tell another caregiver that they have done all they can; that they shouldn’t have to live like this; that they are orchestrating their own ruin and need to put their loved one away “immediately”. I have no right to make that judgement, simply because I haven’t got a clue about their life together and all the dynamics therein. I don’t know what their breaking point is. The only person who can decide that is the caregiver. And I have no right to tell them otherwise.

I didn’t choose caregiving; but I have chosen to be a caregiver, for the simple reason that I love Jack. He deserves to have his dignity for as long as I can help him to maintain it. He deserves to live in his own home, surrounded by the things he loves. He deserves to die in a dignified manner rather than being hooked up to tubes and wires in a strange place. He deserves all of that. And i, as his caregiver, have chosen to give that to him.

I find it hard to share when I’m struggling. That little voice in my head tells me it’s better to keep it to myself because no one wants to hear it. But I’ve had a really hard day today. And I haven’t said anything.

I don’t want to share. Which is why I need to. When I write, the darkness has no power. So, this post:

Christmas Day sucked this year. When I gave Jack his gifts (DVDs that he’d left in CT), he looked blank.

“What are these?” he asked. I told him they were for him. “What do you want me to do with them?”

“You can open them. They’re yours.” I answered. Jack picked a box up and shook his head.

“I don’t know how. You do it.” he said.

I cut the tape without a word and showed him the contents. He was pleased, in a blank sort of way. And that was our Christmas day.

Except for his bath. Did I mention the agoraphobia? Jack now has it because of his dementia. He will no longer leave the trailer unless I’m with him. He won’t go shopping without me, nor will he enter a store. He won’t enter stores, period. No more doctors either. And he absolutely will not go to the shower house any more, end of story. He is done, exclamation point. And that’s his final word.

So I’ve been bathing him in the trailer. And he got a Christmas bath. This was no small feat, since we don’t have a workable shower. It took planning and effort. Fortunately, I’m getting used to the routine.

I pulled the curtains first and put absorbent pads on the bed and floor. Then I rounded up towels, washcloths and buckets (small for soap, large for rinsing). I filled the buckets with hot water and put them by the bed. I found the soap. I got an extra towel for my knees (kneeling on linoleum hurts). Finally, I undressed Jack.

Jack’s bath proper took an hour and a half. To keep him warm, I wet, soaped, rinsed and dried one part of him at a time. I also aimed the heater at him. This kept him comfortable, but left me looking like I’d been swimming. I was soaked when I was through,

As I worked, I told Jack what I was doing, step by step. This way he wasn’t surprised. He was quite perky after his bath, especially after I dressed him. I, on the other hand, was ready for a nap. But it was time to make his lunch.

It takes energy to care. Today I had none. I didn’t stop caring; I just did it slower. But I felt worn out and overwhelmed. When Tim came and set up a movie for Jack, (Star Wars. Volume maxed.) I had to leave. I grabbed my journal, hid in the laundry room, and tried to write. But I was too tired to write. I started to cry and found I was also too tired to cry.

I am not tired because of Jack. I am tired because of my thoughts about Jack and of what lies ahead. When I look at 2018, which is now breathing down my collar, I don’t want it. All I see is this same treadmill, this day after day slog of feeding, dressing, bathing, wiping his bottom, cleaning spills and telling him how to use the bathroom every single time he goes in. I see me going on every shopping trip because he won’t go without me. I see no room for myself in my own life. Jack’s insistence on being with me means my me time has dropped to zero.

And further ahead? Just more worse, faster, until he dies. I have the skills to care for him; I don’t plan to stop. He will not be the first dying person I’ve helped. But he will be the first dying husband I’ve helped. It is my joy, my honor, my love…and my albatross.

When I see what’s next on this journey, I don’t want it. I want to stop time right now, to freeze the calender right where it is. I don’t want to look ahead, because I dread what’s coming. How do I plan a year knowing I will be watching Jack die? How do I find anything to hope for?

In this moment I have no clue. All I see when I look ahead is Jack’s life winding to a close. He will keep fading from my life until he disappears into darkness. And on this night, when this treadmill to oblivion is all my mind can see, I can’t think of anything to look forward to. I don’t even have the energy to try.

Jack came back yesterday. Last night and this morning, he was almost his old self. We were together again, a couple. I have no words for how good that felt.

It was different for Jack. For that brief time, he saw clearly how much of his life he’d lost. He realized how he was. He saw (I think) his future.

We talked for two hours last night. It was an intense conversation. He was angry, sad and scared. He had questions, so many questions. I tried to answer truthfully without being fully truthful. I wouldn’t take away his hope.

“What happened to me?” Jack asked, shaken at his insight. “I can’t remember anything. My whole life is gone.”

“You have something called dementia.” I said. “It makes your brain not work right.” Jack nodded. He understood that much.

“Where did my life go?” he wanted to know. I took a deep breath, praying for the right words.

“Imagine your whole life is a picture on a blackboard.” I said. “Can you see that?” He nodded. “Dementia is like an eraser. It erased big parts of your life off the chalkboard and they’re gone. That’s what the blank spaces are.”

“I know they’re in there but I can’t find them any more.” Jack said, meaning his memories. Then he changed the subject.

“Is it going to get better? Will I get better?” he asked. I wanted to say yes and I couldn’t say no.

“We can always hope.” I said. It was the best I could come up with and it wasn’t enough. Jack’s shoulders slumped; his eyes filled with tears.

“Then it’s over.” he said, his voice breaking. “I don’t think it’s going to get better. I’m not going to be able to drive again.” He cried silently for several minutes. Then he burst out, “Why did this happen to me? What did I do?”

“You didn’t do anything. This just happened. You can’t control that.” I answered. Jack nodded, still fighting tears, letting my words sink in. Then he squared his shoulders and looked at me.

“You need to get your schooling done.” he said, his eyes intense. “Then you need to lock me in a room and leave me there. You can live wherever you want.” His voice wavered, then cracked. “Just come and visit me once in a while.”

“I’m not leaving you.” I told him. But he shook his head.

“I’m no good. I can’t do anything!” he said. “You need to put me away somewhere.” I swallowed the lump in my throat and took a deep breath.

“You don’t need to do anything to earn my love.” I told him. “I didn’t marry you for what you can do. I married you because I love you. And I’m not leaving. I’m not putting you away. We’re walking this road together. You’re not doing this alone.”

Jack’s shoulders sagged again, this time with relief. He wrapped his arms around me so tight I couldn’t breathe. He buried his face in my shoulder and burst into tears.

“Thank you.” he said, his voice raw. “Thank you.”

I held him tightly, not speaking. I was crying too.

This morning, Jack was still here. He bounced out of bed, said “Good morning, sweetheart.” and put his clothes on. He got his shoes on the right feet. He said, “I love you.” several times. He even kissed me.

I felt him across the table from me as we ate. Some of you will understand that.

“We need to get this apartment quickly so I’ll know I’m safe.” Jack said, as we dug in to our eggs and cereal. I told him Tim was coming at ten to drive us over. Jack nodded, munched, swallowed and tapped me with his fork.

“We need to get this apartment quickly so I’ll know I’m safe.” he repeated.

“Tim’s coming at ten, darling. We’re dropping the papers off this morning.” I said again. Jack nodded, reassured.

“Good.” he said.

We drove to the apartments. Tim joked with Jack on the way, and Jack actually joked back. He was chatty and happy, saying how nice it would be to have a real place to live. Tim was amazed at his clarity and awareness. It was a lively ride.

We brought the papers to the office. The lady interviewed us for an hour; then we all relaxed and chatted as she reviewed everything. She wrote a few things down and typed something on the computer. Then she looked up from the screen.

“Everything looks good. We’ll call you when a place opens up.” she said. “You’re number ten on the list now, so it might be a while. But you should be in some time next year.”

I looked over at Jack, smiling. I saw the blankness rising in his eyes, and I knew that he was gone.

I talked Jack into trying Depends yesterday. It isn’t something I’m proud of. But after a full day of cleaning him up and changing his clothes repeatedly (he had multiple accidents due to being sick), I had run out of fuel. I am still getting over the flu, and my energy is limited.

I talked him into trying them “just for today”. I didn’t think he would actually say yes. In the past, he has resisted the idea. But yesterday he didn’t. “Okay.” was the only thing he said. And he tried them on.

I was unprepared for sadness. And guilt. Seeing Jack in Depends was…I have no words. He looked helpless. Vulnerable. I couldn’t reconcile this image with anything I knew.

But I was also relieved. I needed a break from cleaning and changing clothes. I was worn out and my impatience was poking through. And that wasn’t his fault.

My payback for my relief came later, when I forgot to take a laundry bag off the toilet. Jack had to go, saw it there and panicked. He didn’t know what to do.

He turned around, pulled his pants down and peed in the cat box, watched by the bewildered cat. I was getting the bed ready when it happened, and I looked around and saw him. I was like, no, please, not now. This meant I had to change the cat box before I could go to bed.

When I came to where Jack stood, feet tangled in his pants, I saw he was surrounded by a lake. He was standing in a sea of pee. He had soaked the floor, the bunk bed, and the footstool as well as the cat box. And the towels were past him, in the bathroom.

I tried to stay calm. But my frustration came pouring out. He didn’t understand what I wanted, and that made it worse.

I ordered him to sit down in his chair and stay there. He shuffled over, his feet still tangled in his pants, spreading pee all over the kitchen.

“What did I do?” he asked, baffled at my upset. “What did I do wrong?” I couldn’t answer calmly. My self control was gone.

“You peed in the cat box and all over the floor!” I barked. “Now I have to clean up the mess before we can go to bed!”

I couldn’t take back the words. Jack sat there, the picture of shame, big tears starting to roll down his face.

“I didn’t do anything!” he cried. “Why are you picking on me?”

I bit my tongue. Hard. God, help me. What have I done? Knowing I had made Jack cry was the worst feeling I’d ever had. I have never done that to him.

I clamped my mouth shut. I prayed for strength. I mopped the lake up and scrubbed the floor. I dumped the cat box and put fresh litter in. I tidied the bathroom. Then, undone by sheer exhaustion, I leaned against the bathroom door and laughed until my eyes ran, an act that made Jack look at me, baffled.

“What did I do wrong?” he asked again, his cheeks still damp. Struck by inspiration, I went over and hugged him tight.

“You didn’t do anything wrong.” I assured him. “You acted creatively in the face of an unexpected obstacle.”

“What did I do?” Jack wanted to know.

“When you saw the laundry bag sitting on the toilet, you turned around and peed in the cat box. It was a brilliant move.” I told him. Jack’s face lit up and he smiled broadly.

“I did that?” he asked, starting to laugh. I nodded.

“Yes you did, dear.” I answered. “And I am so proud of you. Come on—let’s go to bed.” I got him on his feet, walked him over to the bed, and settled him in. Then I crawled in next to him.

“I did that. I’m really smart.” Jack said again, reaching over to hold my hand. I put my arm across him, snuggled close, and kissed his ear.

“You are very smart, my dear.” I agreed. “And I’m glad you’re here with me.”

I stayed there, holding him until his eyes closed and his breathing evened. Then I rolled over and cried myself to sleep.