How do you deal with life when the person you love suddenly doesn’t remember you? This wasn’t a low progression downward. This was a fall off a cliff. Could he climb back up? Did he even want to? What else would happen?
As I write this, its been a couple of years. And they have not all been good times.
When DH couldn’t remember much, it was hard to deal with. Emotionally I found myself wrung out, squeezed dry, wondering how to cope. At first I didn’t let him see people. It wasn’t that I was ashamed of what had happened, it was more a way of protecting him. And I did, and still do, feel he needs protection.
Did DH know friend from foe? Would people take advantage of him? Would that actually care about his needs? Well the short answer is no, they don’t really care about him, and yes they will take advantage of him. I realize how easy and tempting it is to do that. Just because he doesn’t know the difference, don’t make it right. I had to learn that, and I had to watch out for it. Not just from myself, but from others also.
The first couple of months I really didn’t let DH see much of anybody. I protected him from others. Trust was an issue. Did I trust the person he was with? Would they hurt him, even if they didn’t mean to? Would they take advantage of him? As I slowly let people back into our life, I go some interesting reactions. When people realized how much DH didn’t remember, I actually had “friends” tell me that I didn’t sign up for this. This wasn’t a marriage. I should get out. I stuck around anyway. No matter what, I still cared, and still care.
As DH couldn’t seem to remember, he seemed to lose his appetite. He lost enough appetite he lost about 20 lbs. He didn’t want to eat, he didn’t feel hungry, so he just didn’t eat. At first I didn’t realize how much he wasn’t eating. But as his pants got bigger and bigger, I realized he had just stopped eating unless I was right there with him. And even then he wasn’t eating much.
Another problem was his personal hygiene. He would shower if I told him too, but I couldn’t say he did a great job. It was a learning curve for both of us. I had to realize that I needed to watch over everything he did, and he had to learn to listen to me. It wasn’t easy for either of us.
Thru it all, one doctor suggested that DH do a cognitive test. It took DH about 4 hours for this test. It was difficult for me to just drop him off and leave him for this test. I made a lunch/snack bag for him in case he wanted anything. I wasn’t sure what to do. But I dropped him off, kept my phone with me, and returned to pick him up. We returned to the office about a week later to get the results. I’m almost glad he didn’t understand those results.
During the test they took note of more than I expected. They looked at everything from his personal hygiene, did he take care of himself, cut his nails, shower, how his clothes fit, etc. Now I realize how much that does matter. Its not about vanity, but it is about caring, even for oneself. And at that time, DH didn’t care. And it showed.
But they did a variety of tests. For a person with the BS and MS from a prestigious school, the results showed him as just average. He would have been upset had he understood. For him that would have been embarrassing, unacceptable, humiliating. As hard has that was, what was worse for me was the diagnosis of severe depression and anxiety issues. But after talking with the psychiatrist that was giving us the results, I understood that the depression and anxiety were issues that needed to be handled.
Ironically, there had been times I had wondered if DH had issues with depression. I’d even had a couple of friends ask me if he had depression. And here I had a psychiatrist telling me that DH really did have depression. And depression was, and still is, something I don’t quite understand.
But depression helped me understand some of what was going on. If you are depressed, why would you want to live in a world you don’t feel good about. Sleep and dreams give DH a world where he is great, he’s the hero, he can do whatever he wants. Here in the real world he doesn’t have that. But this doesn’t seem to be episodes of depression. Its become more of a long lasting lifestyle. That’s hard for both of us to deal with.
Then there’s the anxiety. I got a glimpse into his depression and anxiety within the first couple of months. This happened just before my birthday. As a gift, more a break, for myself I wanted to go out to dinner. Nothing fancy, but I needed a break. All this was new to me, and I was still figuring out how to cope.
But the day of my birthday, I told DH I was going out for dinner. He didn’t want to come. He didn’t feel well. He was sick. He wasn’t hungry. He didn’t want me to go. All of these were excuses, but I listened to them anyway. I also gently told him, he could stay home, I would go out, eat, then return home. He wouldn’t be home alone for long. But I was going out to dinner. He came with me. Not only did he come with me, he ate and ate well.
But he was afraid. He was afraid of doing something wrong. He was afraid of how he acted. He was just afraid, and just afraid. It was like there was not specific action of thing he was afraid of, he was just afraid. I truly think he came with me because he was more afraid of being left home alone, than that he wanted to come to dinner with me for my birthday.
There was no card, no gift, no nothing from him. He just couldn’t bring himself to do anything. And it was hard accepting that because what came with it, he still wasn’t sure who I was. So he didn’t want to do anything for someone who he didn’t know.
I cried to myself a lot during those times. I did my best to keep a straight face and calm demeanor, calm temper around him. He really didn’t know what I was to him, so my birthday didn’t really register as something he should care about.
Shortly thereafter we had to deal with Thanksgiving and Christmas. Those were some tough days. I bought myself things, bought him things, but he really didn’t want to celebrate any holiday. It just wasn’t a happy, not even a calm time for him. Not for me either.
It was a tough 60 days.