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.