Life moves on, whether or not we want it to. Thru all this time I was actually in school. I was trying to do online classes to finish my degree. How I juggled school and my DH I could not truly tell you. I do remember exhaustion, doing school work at 3AM, setting alarms to remember to go check on him or make dinner. I kept notes around everywhere I could to help me remember. Looking back on that time I just didn’t let me feeling hit me. I didn’t acknowledge them. I didn’t acknowledge my feelings of being overwhelmed, frazzled, frustration. I couldn’t acknowledge them. To acknowledge them would be to accept that I couldn’t do it all. And I was still trying to do it all, and all by my self.
I was really stupid about that.
DH had appointments. Thank goodness for smart phone calendars. Everything was in my phone. Names, dates, doctor information, prescription information, you name it I kept it in there.
And of course I was still learning a lot. Not just school mind you, but how to handle a house alone. This wouldn’t have been bad except there was so much I didn’t know. DH had always had this idea that nothing would ever happen to him. So he had never written anything down where I could get it. I didn’t know much about our finances, he had handled it even though I had asked about it. He had always felt it was his job to handle it. So I knew nothing. I didn’t even know what credit cards he had. I say he had, since I had one of my own, and one he had given me. Other than that, he handled it all. He had more credit cards than I even knew about. I had a lot of learning to do.
And I had to figure out how to access his accounts just to pay bills. I didn’t even know what bills we had. Who did we get water from? Who was our trash service? I actually didn’t know. I had asked for years, but all that information he had kept from me. I got quite an education, and fast. I took notes about everything. And little things too. When did we need to change the air filters in the house. Where did we get those filter from? What did we need to cover when it got cold?
And then there was the home owners association. He was part of the board. But now, that is was out of the question. I had no choice but to call and talk to them. But that brought its own problems. He had information on a computer that would need to go to another member. But which computer? He had 5, not counting his laptop. How was I supposed to know which computer to look at? What files did I need to look for? It was a mess. But I had to figure it out. He couldn’t help, but life goes on.
And then there would be days when he had it all together. Sometimes, maybe for an hour, maybe half an hour, he was there. He could answer questions, he knew how to help, he remembered. One day he got a call from a friend out of state. They talked. He remember who they were, friends they had, work they had done together. It was like listening to his old self. It didn’t last long. But it could be amazing to see. And it happened with me too. One day I needed help with some filters. He showed me what to do, where to find things, could tell me how often it needed to be done. But after about half an hour I could tell he was getting tired. And as he got tired, his memory faded. It was like for a time he had crawled out of that rabbit hole he was in, until he got tired. Once he started to get tired, he fell right back down that rabbit hole.
But no matter how it felt, I couldn’t cry. I don’t think he could have handled it if I had cried. That part got hard on me.
One time, I needed him to help me make a decision. I still tried to ask him, to at least have him feel like he was a part of us. One day I must have pushed him too hard. He told me I had to ask him wife, Anne (not her name). I even asked him, who was Anne. And he told me that was his wife. So I asked him, who was I. He wasn’t sure. That was hard, it was heart wrenching. But it took him almost a year before he accepted that I was his wife. I guess being around all the time helped. The funny part of about telling me Anne was his wife, was he couldn’t even tell me what she looked like. Another time, he mentioned Beth (not her name), saying that was Anne’s sister. Beth was actually his daughter, Anne’s daughter from a previous relationship, that he had adopted. But in his mind Anne and Beth were sisters, not mother and daughter.
I had to learn to deal with those good days, but not to plan on them. On one good day DH agreed to go on a cruise with me. That year we actually went on a couple of cruises. It wasn’t a great idea. But he had always enjoyed traveling so I thought why not. It was worth a try. Looking back, I probably didn’t accomplish much for either one of us on those cruises.
The first cruise we took was a short one week trip. It went to one port and spent a few night there in one place. I figured it might be easier doing that they a new port every day. He wasn’t happy. Maybe it was too much too soon. We fly into the city the cruise left from. He wasn’t happy being in a new room. Even the hotel room through him for a loop. I spent much of the night letting him know it was okay. It was just a hotel room. And I was there with him. We got on the cruise ship, got to our port, tied up and were able to get off the ship. It was okay, but not great. He got lost the first night on the cruise ship. Now I look back and I realize I was just too tired, I couldn’t keep track of him and me. I was too exhausted. But I tried.
Ironically, even though he got lost, we had been on enough cruises, he knew what to do. He knew where to go to find help. He made it back to our cabin, safe and sound. I could tell there was some relief once he saw me, but he could figure out what to do. He was okay. It wasn’t a great trip, but it did help me realize how much I need something of a break. Even just not having to cook was a help. Having a smallish cabin meant we couldn’t lose things easily.
The second trip was okay. It was a week long trip. We saw more ports, places we had been to. He didn’t get lost on that trip. The only real problem was coming back thru customs. He got cranky. Not the best thing to have happen while going thru customs. His crankiness got him pulled aside and his luggage searched. I stayed with him thru it all. Trying to calm him was not easy. He just wasn’t happy and he showed it. It was something of a mess. Not something I wanted to go thru again.