Jack and I used to do everything together. Now I do everything and there’s no ‘together’. I was tempted to say that this is one of the hardest things to get used to, but then I realized I say that about everything. There is nothing easy about dementia.

In the ‘old days’ before Jack got sick, we would wake up together. Sometimes we would lie in bed for a while talking about our upcoming day. We would discuss a major decision that needed to be made. Sometimes we would just lie there holding each other and watch the sun rise.

We planned our work over breakfast. I had my master list and I would tell him what I needed him to do. Sometimes we worked together. Other times we had our separate lists. In a larger sense, though, we still worked together.

Silence between us was rare. We were always talking about something: the day’s work, our long term goals, or a major financial decision. Conversation flowed steadily, interspersed with laughter and occasional disagreements. Our relationship was built on communication.

Now I wake up alone. I change Jack; I clean him; I dress him. I mop and scrub the bathroom. I take out the trash, feed the cat and start breakfast. I feed Jack (then I eat) and get him to the bathroom. He can’t do anything by himself now.

I plan my day and Jack’s day. But my lists are made in silence. Jack talks very little now, and most of what he says makes no sense. He doesn’t understand plans, work, or days. He doesn’t know why I have to leave.

I work alone now. I do Jack’s job and mine. I’ve gotten used to doing it; plus the work is my break from caregiving. But I miss him.

I miss everything: the partnership, the conversation, having a husband. I miss being part of a team. I miss the days when I could go off to work and not have to wonder how Jack is doing. I miss being normal and having a normal life.

I especially miss my me time. Since Jack is in the shadowing phase, my me time has dropped to zero. Having no me time is exhausting at best. My few snatched moments are precious.

I’m not blaming Jack. Shadowing comes with dementia and he can’t control it. I am his world now; I can’t be out of his sight. Why wouldn’t he want to cling to me, when everything else has gone?

And the shadowing will pass. When it does, it will be a blessing and a heartbreak. It will be a blessing because I will once again be freer to come and go. It will be a heartbreak because my presence, or lack of it, will make no difference to him. He won’t be aware enough to know the difference.

I try not to complain about the path I’m on, because I know someday it will end. I will have more me time than I could ever hope to fill, more freedom than I’ve ever had. My life will belong to me and no one else. I both long for and dread that day.

But I still miss Jack. I miss him right now, when he is sitting silent next to me, lost in a world I can’t see. I miss him because I am eating breakfast alone and will soon be heading to work alone, even though he’s right here. It is the one thing I truly dislike about dementia, this being alone in partnership. I wish I could have him back.