So What Is Dementia?

Most people have heard of dementia, and normally think of Alzheimer's. Right? That horrible disease that steals memories from our loved ones, and leaves them incapacitated in the end. Through this journey with FIL, we were told he had dementia; that's it, just dementia. It was not until we were preparing legal documents that I saw in his doctor's note the words, "Alzheimer's type dementia." Finally! We were finally given a name; we could deal with this much better. Or so we thought...

As I began daytime care giving for FIL, I took note of his behaviors. By this time, he did not communicate much, and when he did, most of it did not make sense to us. However, as I spent more time with him and really listened, I began to understand what he was trying to say. It became very clear to me that we could not just ask him a question out of the blue. "FIL, what do you want to do?" "FIL, are you hungry?" No, this did not compute; he would ask us what we said, over and over. We found ourselves speaking louder and louder, thinking he could not hear us. He actually had hearing aids several years ago that seemed to help, but he does not wear them now. I could tell that MIL was very frustrated every time she asked him a question. She wanted so badly to have a real conversation with FIL, just like they had for over 62 years!

I then realized that I would have to be with him in the moment and let him lead every conversation. When I did that, he began talking...a lot! One of his favorite activities was to visit the big shop he had built out back. As I said in the previous post, he was very talented and very active all of the time. The Shop represented what he knew: to be productive; to be the provider of his family. At first, he was so excited to show me his many tool boxes, and pegboard covered walls full of tools. "Look at this!", he would say. "Have you ever seen so many tools?" He would proudly uncover the band saw and the jig saw he had standing near his toolboxes. He showed me a collection of jacks that he said worked so well when he needed to work on a car...He often told me that he built houses, and fixed cars...but he didn't know how many. I told him that he built the house I lived in; he asked if he did a good job!

His pick up was one of his prized possessions, and I remember when he bought it new. He used it for hauling brush, building materials, musical instruments, and electronic amps. He often said, "It isn't very old." Almost every time we went to The Shop, he wanted to show me that it still ran, so he would try to start it up...when he could find the handle to open the door. There were days that he went straight to the handle and opened it with no hesitation. But other times, I watched him start at the front wheel well and feel his way along, as he tried to "open the door". Once open, he would climb inside to "crank" it. FIL was a man of many keys, too. He had a big bundle of various keys that he kept in his pocket: Keys for the house, all of the sheds around the property, tool boxes, his pick up, MIL's van. You name it, he probably had a key for it on that key ring. It pained me to watch him. He tried key after key in the ignition...but could not find the right one. At times he did have the right key, and the bells sounded; but he didn't hear them and tried more keys. One thing I learned about FIL--when he wants to do something, he is very persistent. Nine times out of ten, he eventually started the truck. When it didn't, I suggested that hubby take a look at it later.

As time went on, day after day, and numerous times a day of going to The Shop, I began to despise it. How many times would he show me the tool boxes by opening drawer after drawer? How many times would he explain that he used to build things and use all his things? One day in particular was very disturbing. He was in his "dementia stupor", as I liked to call it. He was mad at me for something, so he headed to The Shop. Once he was able to open the door and climb in the pick up, he shut the door and began trying to start it! I knew we were in trouble when he shut the door! He tried and tried several keys and once he found the right one, he revved the engine. He revved the engine so hard, I thought it might explode! In fact, the truck began to smoke heavily. I tried to get his attention so he would turn it off, but he was still quite angry and would not look at me. The fumes were horrible, so I had to step outside in fresh air. I called my hubby and told him what FIL was doing and that I thought he was going to blow up the engine! During that particular incident, I had to call MIL from the house to get him out of the truck. It was not a good morning.

You may have heard the term "sun downers", which generally means as the sun lowers in the horizon, dementia patients begin to act out and become agitated. This was true of FIL. Interestingly, as time went on, his became "after lunch downers". After our noon meal, he would get in his dementia stupor and act out in some way. Some days he was just angry and would give me lectures. It became a cruel joke when FIL would declare angrily, "You know who this belongs to? Me! It's all mine! I spent thou-sands and thou-sands of dollars on this." (He has a strange way of drawing out the word thousand; we will never forget it, and can now joke about it.) Over and over, day after day, increasingly angry and paranoid someone was taking his things. He had a habit of moving something every time he went to The Shop. Then, when he returned, oh my! "Someone" had taken this or that, and not returned it. When I asked him who was doing that, he said he knew, but would not tell me. I knew what he thought; he thought it was his sons. In the past, FIL lent them anything they needed. Car parts, tools, whatever he had. Now, they generally would return such items. But, FIL had it in his dementia mind that they were taking from him and not returning. "I don't like theives!" he would often declare.

More to come...