I have been immersed in dementialand for several days, trying to make sense of where Jack is. I can usually get a clear idea as I listen and ask questions. But this time I’m not having much luck.
For three days, Jack has been talking about looking for a house. It is, he says, a house he saw ‘before’, when I was ‘busy fixing the cat’. He tells me he talked to a man who was tired of taking care of his house and wanted to give it to us. He (meaning Jack) doesn’t remember the man’s name or where he actually saw him. He never got the man’s name. He doesn’t know where he lives. But the town, he says, was ‘where we first started here’. Sometimes that means Westport; sometimes it means Port Angeles. I haven’t been able to make sense of his ‘memory’.
Jack wants to find the house RIGHT NOW, before we lose it. He says repeatedly that we have to get a ride to this house, to talk to the man and tell him we want it. It’s not that far away, he insists. He would know it if he saw it. It’s “right on the top of the hill”. We could walk there, but it’s easier to get a ride. I need to ask someone to take us there.
“You never want me to have anything.” he accuses, when I don’t run right out to find us a ride. “It’s always about YOU and what you want.” He storms off in a huff, leaving me wondering how I can understand. How can I find a way to make things work?
In Jack’s mind at these times, I’m the enemy. I don’t want us to have this house. Or I don’t believe him. Or I don’t care. I’ve heard all of these several times and the words hurt. But there is no point in answering. All I can do is keep trying to understand.
“I wasn’t there.” I finally said today, when he again got mad at me for not remembering. “When you were talking with this man, I was busy with the cat. I don’t know enough about what happened to help you. I wasn’t with you when you talked to him.” It was a shot in the dark, but I’d run out of answers. “I can’t help you to remember when I don’t even know.”
And somehow that got through. Jack told me more of ‘what had happened’ that day, But as I asked more questions, the story kept changing. I knew there was truth in it somewhere but I didn’t know what it was.
Jack didn’t remember the man’s name. He never knew the man’s name. There was going to be a house, but it wasn’t built yet. The man had the land and it was ‘all filled up’. There was no house. But… “There’s a place where you can buy ice cream. The girls run it.” Jack said. “That’s what you and I could do—we could sell ice cream. It would be perfect.”
He wasn’t sure where the man lived, but it wasn’t here. It was “where we started here”. It was “up on the hill”. He needed to look for the man to tell him we wanted the house. It wasn’t that far away. If we walked long enough we could find it. The man was working on the blueprints and would build the house just for us. But we needed to go soon.
“If you don’t want to go with me, I’ll just have to walk there myself.” Jack said, as we ate dinner. It was a challenge I didn’t know how to answer. So I took a deep breath and said, “If we’re going to walk there you’ll need to get used to walking longer distances first. Why don’t we take a walk around the campground after dinner and you can see how you do?” Jack’s face lit up and he readily agreed.
It is not a real solution. At the moment I don’t have one. But Jack knows, at least for now, that we’re on the same side. I have no idea what will happen next.
THE CAREGIVING LIFE 
Oh honey, you are dealing with something impossible! And what a dear, compassionate friend you are being to Jack. I am familiar with this difficulty and it is nearly impossible to do. My partner Mike has dementia too — it manifests same way — he spouts nonsense, “word salad,” gobbledygook. When I say “No, honey, that can’t be true” Mike might jump me with a raised fist. Pout. Show an evil eye glare. Curse me under his breath. Slam things around. Tries to bully me. But the things are nonsense — some dangerous. He is defiant and uncooperative. It is a result (we had brain scans done at The Amen Brain Clinic) of left frontal lobe and other brain damage. Mike was bricked in the head during an assault. It is so unfair! And now Mike has become assaultative! I grieve for him. And because NOBODY CARED and everybody was terrified of him, he became homeless, unemployable, landed in jail a lot, and was headed for prison because police thought he was a junkie. SO SO WRONG! SAD! Because Mike has a Masters degree in physics, donated to charities all his life, was a teacher, loved animals, played beautiful guitar, spoke several languages, kept a garden and was soft-hearted with kids. Now he is like a second-grader. Not always, but often, especially when tired to r stressed or missing sleep or hungry but won’t eat. Why did I stick by this ruined person? When he broke my things and went to hit me? I lost all my friends and most of my family because I chose to stick with him till he got some answers as to what the eff is going on in his brain. And three years after the brain scans (SPECT scans) showed “dead spots” and “hot spots” in his brain, and the docs at the clinic offering him targeted treatments, and him listening to THEM (he would not listen to ME!) — we still have outbursts and all that, but we KNOW WHAT DAMAGE HE HAS and he is much less frustrated, he cooperates, and he takes his meds, which sedate him when this gets out of control. I am no longer alone with this. I feel I am free to leave because he has a plan and I wouldn’t be leaving him to die alone. I will not say I am happy I am with him, because this car does NOT lead to happiness. But it DOES lead me to having a lot of self-esteem. It handled this like the granddaughter of a U.S. Marine that I am. No man left behind. You too, babe, you are a WARRIOR. You show guts. All kinds of strength not many people could muster up. Bless you. He is having delusions, you cannot budge a delusion, nope. But your charming, patient engagement with your guy shows him he is a part of life, not a lost outcast, and you protect him (and others) from harm. I just bought a book about handling dementia. I have to learn more and reach out for more help and I will. Mike was able to get a part time job — tutoring math! — this semester. I feel as proud as a mom would feel for her boy. This hard hard work is NO PICNIC but there are payoffs. NEVER be hard on YOURSELF! You have my great respect!
Thank you Cherry. I know my car won’t lead to happiness in the end either but I’ve never regretted staying with him. I am all Jack has now and he trusts me to take care of him, even on the bad days. He doesn’t want me out of his sight because he is afraid I will leave him too. So he always makes sure he knows where I am.
It can be exhausting and frustrating at times. But underneath he is still the same person, even if he can no longer express it. He still needs love, care and attention, and he needs to know that what he wants matters, even if what he wants exists only in his mind. I know the answers will come. In the meantime, he knows (at least for the moment) that I am trying to help him get what he wants. Hopefully for now that’s enough.