Life settled into a bit of a routine — punctuated by constant challenges from Devin’s autism! If it was not a behavior, it was a learning issue. If not a learning issue, it was a communication issue! But we rolled with the punches, and made it through the next couple of years! But the year 2008 would bring big changes to our household!
Changes in Lonnie
My husband was 22 years older than me, but over the years we had developed a method of working through the differences caused by our ages. In early 2008, we started noticing that he was having some issues with his speech and his memory. When responding to comments or questions, Lonnie would often respond with words that did not correspond with the conversation — as he heard the words that were coming out of his mouth, he would shake his head in dismay and try again.
One of the most common phrases that would be spoken was “Shadow outside” even though the conversation would have nothing to do with our dog, Shadow. Needless to say, this was very confusing for us — but even more confusing for Devin! He tended to take everything that was said very literally, and he could not figure out why Dad was saying that Shadow was outside when Shadow was sitting right next to Dad on the couch!
Every year we made a trip to visit Lonnie’s family in his native state of Oklahoma. Lonnie looked forward to this trip every year, but this year was different. He was excited, but at the same time he was saddened by a premonition that this would be his last trip there. Despite my reassurances, he could not shake that feeling! He was also very nervous about his speech issue and the possibility of it happening while talking to family members.
Over the years we had made this 13-hour trip many times — taking turns driving and stopping at our favorite stops along the way! But this year it became apparent in the first hour of the trip that Lonnie would not be driving on the highway — although his driving in town seemed to be okay, once we got out on the highway one would have thought he was drunk because he could not stay where he was supposed to be on the road.
Once we arrived in Oklahoma, another issue made itself known — Lonnie started having tremors and they seemed to be more pronounced in the presence of a large group of people. This resulted in Lonnie spending a lot of time away from his family members, whereas normally he was right in the center of activities. His brother expressed concern to me that he feared that Lonnie had Parkinson’s. I assured him that I had already scheduled an appointment with the doctor for later in the month and promised to keep him informed.
At the doctor’s appointment later that month, I explained what we had observed and the suspicions that we might be dealing with Parkinson’s. After completing some screenings, the doctor said he did not suspect Parkinson’s but said he would like to do a screening for Alzheimers. As the doctor went through the screening exercises, I was dumbfounded! Lonnie could not tell him what day of the week it was, who the current President was or draw a picture of a clock — all of this from a man who watched the news channels most of the day! When we left the doctor’s office, we had an official diagnosis of Alzheimers.
Later that day, I called Lonnie’s brother to let him know what we had learned. After I told him about the doctor’s appointment, my brother-in-law asked me, “So you have Devin with autism and Lonnie with Alzheimer’s — now what are you going to do?” My response was, “I guess I am going to deal with it!” “Deal with it? You are just going to deal with it?” he asked. To which I replied, “What else can I do? I can’t very well give up on either one of them, can I?” My motto and lifeline through the coming months would be “Deal with it” more often than I could have imagined at that point!
Dealing with Autism and Alzheimer’s
I had never given much thought to it before, but there are a number of similar underlying issues between autism and Alzheimer’s. After about 6 months, I was starting to feel like I had 2 children at home instead of 1 adult and 1 child. I could no longer leave Devin and Lonnie at home alone together — they were constantly at odds with each other and I felt like a referee at times! Both were now dealing with high levels of anxiety, which made me feel like I was walking on eggshells.
Just as I had when Devin came to live with us, I had started researching Alzheimer’s online right after we received the diagnosis. But Lonnie’s case was not following the path that I had come to know through my research. In the late winter/early spring of 2009, he started losing his balance and falling at times. We started having home health aides come into our home several times per week to help him with showering and having noon meals delivered through our senior nutrition program. His hands were no longer steady enough to shave himself, so I started doing this once a day as well. He had decided in December that he no longer felt comfortable driving, so we arranged for Devin to be transported to and from school on a bus for students with special needs.
One afternoon in May, I came home from work and as I walked through the front door of our home I noticed that Lonnie’s lunch was still sitting on the living room table. I could also see the light on in the bathroom, which was at the back of the house. I called Lonnie’s name, but did not get a response so I walked toward the bathroom. Lonnie was lying on the floor of the kitchen near the bathroom door, trying to get up. I quickly tried to get some information from him, but he was too shaken up to answer much. Not knowing how long he had been there or whether he had hit his head, I called 911.
Lonnie spent 2 days in the hospital as they tried to determine whether he had any injuries from his fall other than the bruises. After an MRI and a CT scan, the doctor determined that there was no sign of anything on the scans other than normal aging — confirming the fact that we were dealing with Alzheimer’s as opposed to anything else. He just happened to have a type of Alzheimers that attacked the portion of the brain that controls motor skills more so than the part that controls the memory.
That summer, I sat down and talked to Lonnie. I explained to him that I was a basket case at work, worrying about him being at home by himself and thinking that he might fall again. We decided together that the best thing to do was to find a nursing home so that he would always have someone around to check on him and help him.
At the end of July, Lonnie moved to the nursing home. I took the day off work to get him settled in and then retrieved Devin from a friend’s house to take him to see where Dad was staying. When we arrived at home for supper, we were not out of the car yet when Devin asked me, “So when are we getting a new Dad?” As I tried to explain to him that he still had a Dad but he did not live at home with us, I realized that in his mind getting a new parent or two was not a big deal to him — after all, he had spent 3 years in foster care and changed “parents” all the time.
And that was how Devin and I started our time as a 2-member household.
I would love to hear how you have handled or managed a situation where you are juggling another family member’s health issues with your child’s autism! Please leave me a comment below!