Well, when I said this blog would be about the good, the bad, and eventually the ugly, I wasn't kidding. We are now in the bad, but I will not end with bad but good, because the good is what I want to remember about Dad.
Dad started going to Easter Seals Adult Day Center right after Thanksgiving holidays. He goes twice a week. The first couple of times went okay, though he was a little confused as to what he was doing there and where my mom went. Then a couple of weeks ago when I went to pick him up, the supervisor slipped out the door quickly and said she wanted to talk to me before letting Dad go. I knew right away it was bad because, well I knew. "Edward had a really hard day today. Late in the morning he went to the door and and said he was waiting to go home. I showed him the card you made stating what time you were coming to pick him up, and showed him that it was early still (Dad can still tell time and understands time). But he wouldn't come away from the door. When lunchtime came he refused to come and eat, he just stood at the door. We brought him food, but he didn't want to eat. I kept checking back and around 1:30 I found him sitting on the floor. He was clearly thirsty, hungry, and tired. So we brought him some food and water and he ate it all. Then I took him on a walk around the room. Shortly after he sat in one of the armchairs and fell asleep."
She said this kind of behavior is normal and in most cases they suggest that the family pick up the loved one a little earlier. So I told her we would pick him up at 2ish instead of 3 the next time, because neither of us could break away any earlier. Then I went in to get Dad. He was snoozing in a chair in front of the TV, and what were they playing but the conductor Andre Rieu! I started laughing and asked the supervisor if they watch him often and she said, "Oh yes! Everyone loves it!" Dad LOVES Andre Rieu and will sit watching Youtube videos of his concert for hours if you let him. He conducts and "dances" along and everything.
The following week Mom dropped Dad of and later told me it didn't go so well. He started to walk in, then a bunch of people started walking in at the same time and he came back out, kept pulling on Mom's arm to get her to come in. She finally left him, but I wasn't surprised when at 11:30 I got a call from the supervisor saying that Dad was having a really hard time, standing by the door, was starting to yell and push away the staff, so we needed to come and get him. When we arrived, he was surrounded by staff and the director was holding by both hands, trying to reassure him. When I saw his face I was shocked. He looked like he was on the verge of tears. Apparently he saw a group of people leaving and tried to leave with them. He couldn't understand why he wasn't allowed to leave the room when they were. This is a group of people that go to another room to do a craft or some other kind of activity, but they are cleared for staying with the group and not wandering off. Dad was obviously not going to be cleared for this, so he had to stay. The director was very, very kind, and she said, "I hate to ask, but does he take any kind of mood medication? I hate to give him meds just so he can come to daycare, but I don't like to see him so upset." I told her we would talk to Dad's neurologist about it. This past Monday Mom took him to daycare, and he walked right in, but by 11 she got a call asking her to come and get Dad. Again the problem was he wanted to leave the room and couldn't understand why he couldn't. He didn't want to do any of the group activities.
Mom finally took him to a neurologist today. She said it is common that at a certain stage of Alzheimer's depression and anxiety can set in. Mom mentioned that lately he had been getting up many many times and she was afraid to move in bed, otherwise he would immediately wake up and either go to the bathroom or think it was time to get up. So neither of them were getting much sleep. In the last couple of days Dad has been quite fussy, complaining about the same things repetitively. Some things were completely inexplicable, like insisting that some televangelist named Rolling Roberts was never on TV anymore, he must've died. Others were complaints about how he wasn't allowed to keep his floss. Mom took it away to keep him from flossing at the table, lol. That happened weeks ago and I was wondering when or if he was ever going to catch on. The NP prescribed Remeron, and said if Dad didn't show any ill effects to come in for a follow up in two weeks.
This is Christmas week, and Mom, being in choir, is participating in a few events at church. Tonight is our church's living nativity, and she was going to attend with Dad, then go to choir practice. But by late afternoon she said they weren't going to go because Dad was having some digestive issues and it would be too sketchy. However, by the time we were leaving I could see she was literally at the end of her rope. Dad, like other people with dementia, tends to have some repetitive behaviors that you just can't break. You can only intervene. All day long he had been doing these behaviors, and it was driving her nuts. Finally he started to put on his mouth guard, which he isn't supposed to do until bedtime and Mom just snapped. I went down and told Mike I wasn't too sure about Mom staying home with Dad because she was so fed up I could see an imminent meltdown. So he said, "Well I'll stay home with Dad, since I don't have to do anything tonight. Mom needs a break. Just have her go with you guys." So that is what we did, and I'm so glad. When she got in the car she said, "if I stayed home I would've just cried." I remember days like this when the kids were very young, feeling like if one more kidlet did one more aggravating thing I was going to have a meltdown. In times like this Mike would step in and take over.
At this point who knows how well the meds will work, if they will work, or if they will have some unacceptable side effects. I wondered if it was bad to medicate Dad just in the hopes of him going to daycare in a cooperative mood. But there are a lot of things I think people never think they are going to do, until their backs are up against a wall. At Dad's age, we're past worrying about longterm side effects, and it's clear Mom needs space, needs time alone, even if it's to fill up his and her medicine case without him hovering. Even at her most fed up tonight, Mom clearly said she didn't want to put him in a nursing home. So it is essential that he go away for a few hours each week so she can decompress and take care of herself for a change.
I promised that this post would end with a Good, so if you are still with me here it is. This past Sunday was Christmas Sunday. It's the week that the church handbells and choir doing a ton of Christmas music, and even the kid chimers perform. On this day Mom, Dad, and I went to church early to rehearse. Usually Dad sits in a pew while the groups are rehearsing, and doesn't do much. On this day though, my friend suddenly nudged me in the middle of Good Christian Friends Rejoice, and said, "Your Dad is conducting." Sure enough, Dad was waving his arms back and forth, in perfect 6/8 time. It was pretty funny, and also great to see him having fun. When we played it again during service, he was standing with the rest of the congregation, and just conducting away. Afterwards another handbell ringer leaned over and whispered,"Okay your dad needs to conduct us because he is ON." Later on Mom told me she was mortified she saw what Dad was doing and if she had been sitting next to him she certainly would've stopped him. But I said, "No! he was really enjoying the music, and if he's not disturbing anyone we should let him keep doing it." I remember the video I saw on FB about a woman with Alzheimer's, who hadn't spoken in a very long time. But when a visitor started singing hymns to her, she began to respond. Response to music is a primitive force, in my opinion, so memories of responding to music are buried deep. It's something that doesn't necessarily need cognitive function. It's absolutely heartwarming to watch Dad enjoy music. It's when he seems the most normal.
So, from this post I would ask for prayers for two things. 1) For continued strength and patience for Mom. For her to be able to reframe what is happening to Dad and to accept it, so that it is not so frustrating for her. 2) For Dad to continue to enjoy music as long as possible.
ps. In my next post I'll be sharing about how our family (that is, Mike, me, and the kids) is adjusting to our new blended life.
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