Underwater

This has been a most challenging week for Dad, so by extension for us as well. 2 weeks ago, Mom noticed that the battery charger for his hearing aids was no longer working. She took it to Costco to get replaced. At the store the audiologist told her that it probably wasn't the charger itself, but the power cord that was malfunctioning, so they ordered another one right away. In the meantime, they put a pair of disposable batteries into Dad's hearing aids to tide him over until the power cord arrived. This past Wednesday we went to Costco and picked up the new power cord, but that night Mom told me it still wasn't working, so it really had to be the charger. On Friday, she said the disposable batteries were drained and gave me a new pair to replace them. After putting them in I noticed that they were still silent. Normally when hearing aids are working they will squeal when you move them around, or move them close to each other. But this time I didn't hear a thing. We put them on Dad anyway, but it was pretty clear by day's end that he really couldn't hear much. He got more repetitive with his words, and fussier. Saturday we went out to lunch, and while waiting for our food he started talking, louder and louder, until suddenly he shouted. Mom grabbed his arm, and said, "Hey! What are you yelling about??" Suddenly Dad seemed to calm down, and he nodded and mumbled in assent. But it kept happening, until I said, "do you think he just can't hear us talking to him, and he's getting mad?"

This morning was Easter Sunday, and since Mom is in choir and I am playing handbells we knew it was going to be a busy morning. The three of us got to church early for rehearsal. We thought everything was going to be okay, until suddenly in the middle of the scripture reading, I heard Dad talking. Really loudly. He was so suddenly loud that even the speaker was startled and looked up for a second. From then on it was downhill. Dad just would not stop talking. I didn't hear anything while the choir was singing because I was at the piano banging away for all I was worth, but Mike told me later that Dad wouldn't stop talking, and he didn't know how to shush him without provoking a tantrum. Shortly after the anthem Mom got up and went to sit with them. We had started sitting at the back of the church so Dad would know when to stand and when to sit. But it backfired in that whenever he talks his voice really carries. It's just one of the weird acoustical characteristics of this sanctuary. The farther back you are, the more sound carries. Mike also told me that Dad kept asking where Mom was, so when she finally went back there and sat with him, he quieted down. The final straw though, was when Mike was trying to lead Dad out of the sanctuary. When he got to the pastor she greeted them and put our her hand the way she always does, and he yelled at her. The pastor is one of the most understanding people I know, and I know she was not offended, but I'm sure even she was taken aback because it was so sudden. Normally Dad smiles and shakes her hand, but I think this morning he was just fed up.

Both Mike and Mom told me later that one of the things Dad kept saying was, "There're too many people here! I don't like it! Too many people." It's true that today, being Easter, the sanctuary was packed, when it normally is more like 3/4 full. On the way home Mike said, "Maybe this is it, it's time to stop bringing him. There's nothing we can do to control his behavior, and he's just getting so loud." I was really torn. On the one hand I understand what he means. What happened this morning was similar to the phase we went through when the kids were much younger and very squirrelly during service. If they got too unruly we could take them out. But in this case there's nothing we can do, because if we try to get him out of the sanctuary, we're liable to cause an even bigger scene. When the kids were young we went through years of coming to church and leaving without remembering what the sermon was about, because we were so distracted by whether the kids were behaving. This morning for the first time in ages, I sat there during the sermon and and found my mind wandering again and again, because I could hear Dad's voice from the other side of the sanctuary. By the time he stopped my thoughts were completely scattered, and the only words I remembered from the sermon were, "Christ has risen indeed!"

On the other hand, I don't want to give up just yet. I really think, or I want to believe, that one of the main problems was that Dad cannot hear. And since he cannot hear he is not getting any feedback, which must be extremely frustrating. It is not normal for him to talk while the choir is singing. He's really into the choir, and the one time he has always been quiet is while they are singing. So I'm wondering if he just couldn't hear them and couldn't figure out what was going on. I also think this morning was challenging because there were indeed a ton of people compared to usual. Maybe it was too overwhelming. Finally Mom told me that he pretty much stopped sleeping last night starting around 2am. He just kept getting up or playing with his cpap mask. He's been doing that a lot at night. One reason is that it is worn out and needs to be replaced, which is due to happen very soon. The other is more challenging, and that is one common behavior of Alzheimer's is restlessless at night. A person will get up and either wander, putter, fiddle around, etc.

This is putting a huge strain on Mom, who is getting even more sleep deprived. I suggested that it might be time to consider getting a night nurse so she can get more sleep. She is open to that. She also said that at support group yesterday she was told it would be a good idea to put Dad's name down for a nursing home, just like they have done for the assisted living home in CA. Because a vacancy opens only when someone passes, so you want to get your name on a list BEFORE you need a spot. You can always defer when your name is called. There is a country nursing home very close by that has been highly recommended by a few people. I think we will also do the same for 1 or 2 memory care facilities. One of them hosts the support group that Mom attends. We have filled out an application for adult daycare there and hope Dad passes the assessment this week for enrollment. The other daycare is just not working out. It may be a combination of their set up and Dad's personality, but it is not a good fit. Twice in last two weeks Mom dropped him off, only to be called 5 minutes after she got home to pick him up because he was agitating to leave and causing too much of a ruckus. That's a bad day. On a good day. he wouldn't fuss, but also did not do anything except sit in a chair, or stand by a window. He would also never use the bathroom, and for the next few days he body would need to recover from that. We are hoping that this new daycare, housed in a memory care facility with staff fully trained in dementia, will be more comfortable and reassuring.

When I was in college a movie, "Children of  Lesser God," was released, and later won at least one Oscar. It's a story about a teacher who goes to work at a school for the hearing impaired. He meets and eventually falls in love with a former student, who at the beginning of the movie is angry, and cut off from most people. There is one scene where he is submerged in a swimming pool, trying to understand the experience of being hearing impaired. That scene came to mind many times this weekend. Not only because I know Dad is very hearing impaired at the moment, but because his impairment spreads broadly across many levels. I'm told that people with Alzheimer's eventually close in on themselves, seeming to be mostly in their own world. I wonder if part of what is really happening is that THEY feel closed off from the world more and more. They see people, the world, and life, going on about them, but for reasons they can't understand they have more and more difficulty joining in. They want to converse, but they can't find the right words, so they say anything they can recall. They want to do things they've always done, but they find it harder and harder to remember the sequence, and one day they find they can't even get started. This must be extremely frustrating for a person who is going through the process, so it's no wonder they lash out in angry words that don't always make sense to the listener. It's no wonder they get anxious. Any rational person would get extremely anxious when constants in their life start to fade away. A person who has dementia would understandably get very anxious when their anchor person suddenly walks out of their sight, or drops them off and leaves, or goes away for a few days.

Yet, having some insight to their thought process, or assuming that I do, doesn't make this experience any easier. You can completely understand why a person behaves the way they do, but dealing with them still sucks.  And still, while screaming in your head, "why are you not cooperating??" you know you love them. Even on days when love is boiled down to an act of choice, not a sentiment.