Yesterday, Tony and I went to Asheville for the day to get out of the house and have a change of scenery. He’d been a bit restless of late, and I thought a day trip to our favorite destination would be the perfect cure. We had planned to go downtown to a great old bookstore, eat at one of the best restaurants we’ve been to, and visit some of the record stores downtown. We did all of the above, and though we had a nice time, Tony never quite settled into the day until we went in his favorite record store, Harvest Records. We spent over an hour there, and he found several records to purchase, lifting his mood and grounding him. After that, we went to a local grocery store to get a few items that we can only find there, then headed home.

Because Tony had purchased so many records, we had planned a “listening party” for when we got home, something we’ve always liked doing. It’s been a comforting thing in the past for us to sit together in the front room where his and my records are and play music to each other on his turntable. We’ve spent many a Friday and Saturday night spinning tunes and enjoying each other’s company, but we haven’t done it much lately, largely because of our hyper pup Zuzu, who tends to spoil the mood with her mischievousness, and also because of Tony’s (new) inability to focus for long periods of time.

But tonight, our chances of having some quality time listening to music were high, as Zuzu was boarding, and our old dog Bugsy was so quiet that he didn’t bother us, just slept on his cushion.

I settled into my easy chair in the front room, waiting for Tony to come and play some music. Ten minutes passed, and he didn’t show up. Ten minutes more…

I listened closely, and heard him in our bedroom, shuffling around. Curious, I went back there and found everything off of my desk and on the floor, with Tony moving things around. There was no reason for this: I hadn’t even spoken about my desk, and the last thing I’d heard was Tony saying he was going to go grab a book for me out of the room, then we’d play music.

My desk is my sacred space. To some it would look cluttered; to me, it is peace and creativity. The desk is an antique captain’s desk that my father gave me, originally from an old ship. It’s small yet heavy, and tucks into a corner of our bedroom perfectly. On it I have a 1950s transistor radio, two Freewrite typewriters (including the one I’m typing on now) and a variety of little trinkets and things that have meaning to me. I also have some books to the side of the desk on a small bookstand, as well as some cards I’ve been meaning to send, and a few other items. It’s my peaceful, creative space.

When I walked into the bedroom, Tony was taking apart everything, and all of my stuff was on the floor. I asked what he was doing, and he proudly exclaimed, “I’m cleaning up!” I reminded him that he was moving around my stuff, and that I had everything the way that I wanted it. He continued to “clean” and move things around. I asked him to think about how he would feel if he found me taking all of his stuff off of his desk and moving it to another locataion. He got angry and said that he was trying to do something nice, then stormed out of the room. 

Instead of relaxing as planned, I now how to put everything back on my desk, though I couldn’t put it back the way it was because he had misplaced some things. He had lost the envelopes to the cards I needed to send, and moved some of my trinkets that I have yet to find. 

Because of his Alzheimer’s, nothing is sacred in my house. Tony is constantly moving my stuff to “clean up” and then forgetting where he puts things. Recently, he went in my underbed storage boxes and took everything out. He took an antique book that my grandfather had given me and put heavy packing tape all over it, proudly showing me that he had “fixed” the book, when in reality he had ruined it. He also stated that he was going to give the book to a friend of his. When I told him that it was my book and not his, he said he thought that the things under the bed were his. I’ve yet to find some of the things that were under there, a once private space that held some of my most dear items. I had put them in underbed storage boxes to keep them safe, but no space is immune to his cleaning sprees.

This is yet another example of what Alzheimer’s looks like in our life together. Tony would have never gone through my things in his “right” mind. He has always been a man of order, that’s for sure, but to randomly take things out of my space would never have happened. So why is it happening now?

The frontal lobe of the brain is responsible for rational decision-making and judgements. In those with Alzheimer’s and other dementia-related illnesses, this part of the brain becomes damaged. For people with Frontotemporal Dementia (FTD), this type of damage happens earlier. For people like Tony who have Alzheimer’s (in his case, Early-Onset) this type of damage happens a bit later in the progression of the disease. This is the first year I’ve seen this kind of behavior in Tony, a complete lack of boundaries where “stuff” is involved. He moves and misplaces my things frequently now, including letters, books, clothes, and basically anything in view (and, in the case of my underbed storage boxes, things not in view!) He claims everything as his own, not mine, and I am now having to hide things that are important to me. I am in the process of fixing my daughter’s old room into my office. Tony never went in that room much, so he doesn’t have a relationship with it and usually stays out of it. So it should be a safe spot for me to create a new office and feel a bit more secure.

Yesterday, after I had told Tony that I wasn’t happy that he had moved my things off of my desk, he stormed out of the room angry. Another symptom of Tony’s Alzheimer’s is an almost childlike pouting response to anything he feels is admonishment from me, even if I am speaking calmly and kindly, stating facts without emotion. He often stomps off, or sometimes even curls up in a ball and pouts. This, too, is common of people with Alzheimer’s, as their brains can no longer regulate emotions in the same way. But at least for last night, in five minutes time he had forgotten the whole incident, and we finally started playing records in the front room. 

Now I just have to sneak back in my room tomorrow and put everything back the way it was and hope I can find everything.

Easier said than done.

With love and respect,

Amanda