I always thought (some part of me did), that Jack would come back. I drew comfort from that thought, that there would be a ‘someday’. I held that thought, I see now, as a defense against the truth. My heart wasn’t ready for reality.

Yesterday I met that reality face to face. I was on the phone with mom when it happened. She was planning to send a card to me for both of us this Christmas. She would send one to Jack as well, she said, because she knew he loved to get cards. I liked that idea, but…

“You don’t need to send one to me for both of us.” I told her. “I’m not part of a Mr. and Mrs. any more.” It took a moment for me to absorb what I had just said. Then the tears came.

I ended the call. Then I sat there and cried. It was the first time I had really cried since I placed Jack and I couldn’t stop. All the months of holding it in let loose; and I finally allowed the tears to fall. It felt good and it hurt like hell.

It is a relief to face the truth. I’ve been pushing it back because I’ve had no time or space to feel it. Now I have both. I can finally start to heal.

It is also very hard. I can’t wrap my head around knowing that I will be living as a “me” and not a “we”. I know that will change with time; but right now it feels too large. Forever is a long time to be without Jack.

I realize I’ve already been living without him. But somewhere in the back of my head, that small part of me was waiting for him to get well and come home. That thought walled my heart against the grief of forever. Now I need to learn how to move forward without that wall.

I am visiting Jack today. I am looking forward to it, and I don’t want to go.

I am looking forward to it because it will be good to see him again. To make sure he’s still happy and has what he needs. To put my arms around him and hug him, even if he doesn’t hug me back. Just having him in my arms will be enough.

I don’t want to go because I will not be visiting Jack. The Jack I knew and loved is long gone. He knows we’re connected in a dim sort of way, but the understanding of ‘wife’, with all its connotations, has vanished. I will simply be a visitor, one that seems familiar. Someone he might know without knowing why.

I am not looking forward to that. But I’m visiting today, because aside from me no one visits. Thank God Jack doesn’t care. He forgets life as it happens now. He doesn’t know that no one comes.

I go because I love him. I go because hope dies hard, because part of me longs for reconnection. It’s hard to be the only one who knows. I still wish things were different.

Part of me is glad it’s not. Jack doesn’t know his mind is gone. He doesn’t know his body’s shutting down. He doesn’t know his time is getting short.

He is happy and content. In his mind, he is home, surrounded by those he loves. His nurses are his family. They hug and love and kiss him, give him all the care I can’t. It makes this journey easier to bear.

It’s hard to go, knowing he won’t know. He will say hi, of course, be glad I came. He will ramble on, thinking he’s made sense. But he will get distracted, forget I’m there, wheel himself away. The nurse will bring him back; he will say hi, ramble on and leave again.

His indifference is the hardest thing to bear. Knowing that it’s ‘just’ the progression doesn’t help. All my heart knows is, the man I loved is gone; and there is no way to get him back. All I have are memories and they have to be enough.

Dementia, that brutal thief, has stolen everything we had, everything we built. And I have to sit here with Jack and watch it die.

Have you ever gotten a comment that sounded like concern but wasn’t? I got one of those today.

I had just come back from the eye doctor. The gal on shift was out watering some flowers. When she saw me, she asked about my eye patch (I have to wear it for 24 hours). Then, without missing a beat, she said, “So, have you started getting on with your life yet?” To say I was surprised would be an understatement.

“Well, knowing that Jack might not make it past August is kind of a heavy load to carry around.” I answered a bit sarcastically, taken aback by the question.

“Mmm-hmm. But you’re young. You have a lot of life ahead of you and you need to start doing something about it.” she said. “Jack isn’t here any more.”

I was saved from answering (fortunately) by a customer who stopped to chat. I made a beeline for home, ears steaming, and slammed the door.

This woman has never been a caregiver. Her comments were probably well meant. I’m sure my life doesn’t look like much right now (at least to her). But she can’t judge whether I’m moving forward or not, because she’s not in my shoes. She wouldn’t last a day in them.

This woman has no clue that when I get up every morning and go to work, I AM moving forward. When I go out and socialize with guests while grief weighs down my heart, that IS getting on with my life. When I put in the energy and the time to make things look beautiful, I AM doing something about it. I am moving forward in spite of my grief.

I AM getting on with my life, every single day. And this woman doesn’t see the amount of energy and raw courage it takes to do that, because it happens in the privacy of my trailer. But it doesn’t matter if she doesn’t see it, because I do.

Her comments made me realize just how strong I am. They made me see the strength and determination that drive me to continue living, even when my grief wants me to quit. I am moving forward beautifully. And I am the only one who needs to notice that.

I am having a hard time adjusting to Jack’s absence. Right now it fills most of the space that my caregiving used to hold. I bump up against it in the morning when I’m having breakfast; I face it every time I go to work; I share my bed with it every night. There is no part of my life left untouched.

Jack’s absence is the largest thing in my life. It follows me everywhere like a pet dog. Wherever I go I’m reminded that he’s gone. His absence fills my life; all I can do is accept its presence.

Work is hardest. Not just because I work alone (I am used to that), but because there is no place for grief. My grief stays in the trailer. If I can’t leave it there, I wear my headphones and sing.

The people who knew and loved Jack are gone (except for one friend). It wasn’t planned; it just happened that way. Almost no one mentions him, which underlines his absence. But that is no one’s fault. They were coming as he was leaving, and he wasn’t seen as family.

On the surface I’m moving forward. I am remodeling and repainting the trailer; I am slowly weeding out Jack’s things; I’m working regular hours; I’m getting out and having fun. Outwardly I look like I’m doing very well.

Privately it’s different. I often dissolve in tears. At times I just sit, clueless, not knowing how to fill the space. Without the whirlwind of caregiving, I am at a loss. I was so, so busy. And now I’m not.

I don’t run from the space. I let the tears come. But I can feel myself wanting to be busy for the sake of being busy, so I can feel  like I have value. Without caregiving, without Jack, I have no idea who I should be.

I’m determined to fill the space with me. Which means I have to live with it until I know how to fill it. It has to be organic, not forced. Otherwise there’s no point.

For now I live with grief. I live with knowing that by fall I will probably be a widow, which means I will grieve again, differently but no less deeply. I live with what the poet Marge Piercy calls “this toothache of the heart”, this deep pain that never leaves. There is no other way.

Jack and I have been apart for eight days. In some ways, these have been the longest days I’ve ever had. I have felt lost in a wilderness, a vast empty space that used to hold all the duties of caregiving. It is both freeing and unnerving to feel so lost.

I am coming to realize that caregiving shaped my life in ways I wasn’t aware of. Getting up, going to bed, eating, using the bathroom, taking a shower—all of these activities revolved around Jack. His needs set the schedule for everything. I got so used to it that I didn’t notice it any more.

Now I am free to choose. I decide when to go to bed, when to get up. I eat when I’m hungry, not when Jack is hungry. I eat foods I want to eat, foods that I can chew. I take a shower when I want to, instead of waiting for someone to be there watching Jack.

I didn’t realize how all-encompassing caring for Jack had become, until I stopped doing it. His well being and safety shaped every decision I made. He was always foremost in my mind, even when I didn’t consciously realize it. He took center stage in everything. But I am not complaining. It had to be this way.

Now Jack is in a nursing home. It’s a beautiful place, filled with people who are dedicated to his safety and well being. He has settled in well and thinks he has always lived there. He has forgotten the trailer and the life we shared.

Although it’s a relief to be freed from the challenges of his care, I have not forgotten. As a result, this week has been a hard one. I have felt a roller coaster of emotions: sadness, panic, loneliness, excitement, joy, fear. I go from high to low, sometimes dizzyingly fast. I know it’s all normal. I try to ride it out and breathe.

My soul knows what the rest of me can’t face—that Jack is not coming home. For the first time in almost fifteen years, I am alone and can shape my life however I choose. This knowing is both exciting and scary. I haven’t had a life to shape in a very long time.

My life was devoted to Jack. My life WAS Jack. I couldn’t take a breath without thinking of Jack: what he needed, what was missing, how I could do better. Jack was the center of everything; and I was responsible for keeping him there. As his caregiver I had no other choice.

Now I am the center of my own life. It is exhilarating. It is terrifying. I have no idea what to do next, except take things a day at a time. And breathe.

I am going back to Westport tonight. I am sad to be leaving Jack. I am also worn out and I can’t wait to get home.

It is hard to let go. But the reality is, I can no longer care for Jack. He had two major strokes a week apart and needs lots of skilled care. It now takes a village to do what I used to do by myself.

I would be lying if I said this was the outcome I wanted. But I know in my heart it’s the right one. He is in an amazing place, with an entire team of people devoted to his care. I could not have asked for anything better.

There are no words to adequately describe how I feel right now. I can say that I am rock-bottom exhausted at a level I’ve never known. But that’s not quite true either. I’ve been exhausted for months, but had to push through it. I couldn’t not push through it. Jack depended on me and I had to be there.

As I’ve watched this fleet of people, though, doing as a team what I used to do alone, I’ve seen how much I was actually doing, the tremendous volume of non stop labor. It was a labor of love, truly, but it was still labor. I was doing the work of a team.

And now that work is done. For the first time in two and a half years, I will not have a life that’s entirely devoted to Jack. My life as a ‘me’ is unrolling before me like a long, green rug. I have put my toes on the edge. It is a good first step.

I will have all the me time I need now. I am scared to embrace it. I feel guilty for craving it. I am excited to begin it, to have a life. I have both dreaded and longed for this day.

But I need my life again. I need to rebuild my health, which has taken a hit. I need to reconnect with ME. I need to rest my body and allow it to heal. I had to lift and turn Jack in the hospital several times when they were understaffed, and I am hurting. A lot.

In my darker moments, my new life feels like a long string of losses. I’ve lost Jack; I am losing his income to the facility; I have lost my role as caregiver. I have lost my main sources of transportation. The space left behind is massive. I feel the space and fear it will never be filled. I don’t know yet how I will fill it.

But then I look ahead with different eyes and see my life. I see myself freed of the worry of caring for Jack 24 hours a day. I see a life where I can get a good night’s sleep. I can keep the trailer clean, play my music loud, journal, color, build my web site (finally!), work a normal schedule, come and go as I please and do fun things, for me. It’s been so long since I’ve done any of that. I will have to remember how.

I am going back to Westport tonight. When I get home, I will close the door and hug the cat. I will sleep in my own bed for the first time in almost two weeks. When I wake up, I will have breakfast. I will begin the tentative process of settling in.

I will probably cry. A lot. Two and a half years of unshed tears have been spilling over at the oddest times. In the many months of caregiving, there was no time for tears. Now they are demanding to be shed. I can’t stop them. I don’t want to.

But I will heal, over time. I know this. Underneath all the churning emotions, I feel a deeper peace. I’ve done what I promised I would do and I have no regrets. Jack is safe, happy and comfortable, and he is getting good care. And I am finally coming home.

This is the hardest thing I’ve ever done.

They had to medicate Jack last night. He got anxious and combative because I wasn’t there. He insisted on getting out of bed so he could find me. He doesn’t realize he can’t walk safely on his own because of the stroke.

When I got to the hospital just after six this morning, Jack was in a med-induced sleep. But he wasn’t wearing his CPAP, and his oxygen saturation was down to 89. When I asked why he wasn’t wearing it, I was told he had just fallen asleep. I told them to please put it on immediately. They did. His numbers came back up.

I promised Jack I would never let this happen to him. I promised him I would keep him home. Now, due to things beyond my control, he isn’t home. He is lying in a hospital bed and being given all sorts of medications. This is exactly what I didn’t want.

Now I have to let go. I have to accept that he may not come home again. I have to let go of caring for him. Since I’ve devoted this part of my life to caring for him, I’m struggling.

I’ve always given him good food, kept him safe, allowed him his freedom as much as I could. Now he is in a hospital bed, not allowed to get up, being fed a diet that I wouldn’t choose for anybody. It breaks my heart. I am both angry and sad that it has come to this.

But I can’t have him home. This is the reality. I can’t keep him safe now. I can’t catch him if he falls.

I can’t do a two person transfer. I can’t choose what he wants to eat because I don’t know how his swallowing was affected. I can’t help him in the bathroom any more. There is so much I can’t do.

Right now all I can do is be with him. I can be his advocate, his voice. I can work with the nurses and calm him when he’s upset. I can help him adjust to this new chapter.

I pray that what I do will come to be enough. I pray I can adjust too.

I just got home after the longest 24 hours of my life. I was greeted by the overjoyed cat, who climbed me like a tree, rubbed my face with hers, purred madly and drooled happily down my neck. There is nothing like being greeted by a cat.

I put the cat down. I fed her, changed her water, and gave her a large handful of treats. I rinsed a mug in the sink. I pulled out soup, filled the mug, and put it in the microwave to heat.

I found peace in these mundane acts. My bones felt the reassuring tug of familiar routine. There was nothing better than coming home after a long ordeal to rest.

I took the hot soup from the microwave and brought it to our small shared table. Then I put the soup down, sat, and cried my eyes out.

Jack is gone. He most likely won’t be coming home again. After several days of evaluations, he will probably be placed. My days of heavy care are done.

I will no longer have to clean, change and bathe him. I won’t have to mop daily lakes. I won’t have to puree meals, do toilet runs, dress him in the morning and undress him at night. I won’t have to worry about leaving him alone.

But I won’t have Jack. I won’t have the chance to hug and kiss him many times a day. I won’t have his smiling face at my table. I won’t have his warmth beside me in bed.

I won’t have Jack. But I will have a life. I will have a chance to breathe, rest, and heal. I will have me time. I will have me.

I sip my soup, wondering how these two large realities can coexist in one small, broken heart.

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.

This post was sparked by two things.

One was an article I read about everything that is wrong with caregiving. I am guessing it was written by a caregiver, because there are certain things that only caregivers know. The article was in the Huffington Post. This is the link, if you are interested. https://m.huffpost.com/us/entry/us_57e2e78ce4b0e80b1b9fff6e

The other thing that sparked this post was a conversation on my Facebook page. Some friends and I were discussing the reality of caregiving versus the “advertised” reality. We agreed unanimously that the two are vastly different.

In the “advertised” reality, all I have to do is dial a phone number (perhaps the Alzheimer’s hotline or the local AAOA) and I will get all the help I need. The idea promoted is that finding help is easy. I am not saying these resources aren’t helpful because they are for many people. But they aren’t helpful when it comes to caregiving.

The reality is, when it comes to day to day caregiving there is no real help. While there are paid people that will help with certain aspects of it, at some point they leave. Then it’s just Jack and me. My shift never ends.

When I am feeding Jack dinner and he sneezes a mouthful into my face, there is no one to call. When I am wiping his bottom after he has diarrhea and he poops on me while I’m cleaning him, there is no one there to hold my nose. If he pees on everything during the night, I am the one who cleans it up. If he wants to find home and the only way to calm him is taking him out for a walk, I will walk him until he gets tired. I have no choice. There is no one else to do it.

The reality is, while people may offer to help (and sometimes actually do help), no one wants my job. If Jack is having a bad day, his caregivers are glad to go home and leave him to me. I am not knocking them when I say this. Dementia is trying on the best of days.

And Jack, since he has dementia, has no clue how much I do for him. He lets me dress, change, clean, feed and toilet him, but he fights me at every turn. Not because he wants to, but because he can’t help himself. The dementia has stolen his self awareness. He has no idea of how he actually is.

As hard as this reality is, however, there is one that is even harder to come to grips with. That is the knowledge that no matter what I do, Jack is going to die. It doesn’t matter how many things I try, how much I adapt to his needs, how many ways I use to reach him. In the end, none of it will make the slightest difference. I will keep expending more effort for less return until the day he finally goes home.

Getting out of bed every day with that reality staring me in the face makes things even harder. I have days where it feels pointless to try. But I make sure Jack gets the best care possible because I love him. He is worth it, no matter what anyone might think.

And I keep caring for and loving Jack, even though I know it won’t be enough. He will continue to fade out in front of me and nothing I do will stop it. But knowing that, and facing that truth daily, won’t stop me. When he goes I will have no regrets.