My mom ended up with dementia as a result of radiation for brain cancer. She had the tumor surgically removed, but they wanted to zap the surrounding area a bit to make sure they nuked everything that might cause trouble later. Seems nuking a brain doesn’t always go without issues. I was 1200+ miles away, but saw her nearly every Christmas when she and dad came to visit me en route to their winters away from the Midwest. Sometimes the changes were very noticeable. Mostly, I heard things over the phone; we talked often.
I remember a brief period of time when she knew she was starting to decline. That was terribly sad. She’d tell me “I don’t remember things as well anymore”. She started labeling things, and even wrote her own obituary; she knew she wouldn’t be able for much longer. It was heartbreaking. I’d been an RN for many years at that point. I knew what was coming. It didn’t really take that long for her memory to be unreliable for current things. She still remembered the past fairly well, so we talked about that. I’d ask her questions about recent events now and then to assess where she was in the progression of the dementia. If I got too inquisitive, she’d ask to talk to the dog. Literally. SO, I’d put the phone to the dog’s ear, and get the dog to ‘talk’. That would make mom happy. She loved her ‘granddogger’. She thought it was a riot when Hannah (dog) would howl if I said “woof”, or “bow wow”. That was the cue for showtime. Mom loved that. And it got her out of answering my questions. The dog was ‘safe’.
Mom went through the usual memory issues, and then her judgement got weird. Normally, before dementia, mom was very polite and had great manners- sometimes even a bit prissy. Not with dementia ! She was generally agreeable, but it was better not to tell her ahead of time if she was going to get out of the car on outings. For a long time, she preferred to sit in the car and wait for dad- doing word find games or reading when she still was able. But then the dislike for doing anything unfamiliar started. On one Christmas trip to see me, we went to a nice little town known for their antiques, and a little town diner that had great bread pudding (I’m told; I hate the stuff). SO, Dad and I got her into the wheelchair and got ready to move the chair up the three steps into the restaurant. Other patrons were immediately helping with the door, and before she could get too bent out of shape, she was sitting at the table. If we would have told her ahead of time, there would have been all sorts of wailing and gnashing of teeth.
She was wheelchair bound except for a few steps, but would order the buffet at a restaurant… like the buffet fairy was going to whisk it tableside for her. Dad went and got her what he figured she’d like, as many times as she wanted (she wasn’t a big eater, so it wasn’t more than one refill- usually of something starchy). He and I, with our stable feet, would order the sit-down stuff. But, mom would be happy. He did all he could to make every day something that was as pleasant, and pleasing, as possible. Her last years were one long, huge gift from him. There weren’t many days when he didn’t at least get her out for a ride, even if just to some random place, and home again. He didn’t let her just ‘sit’.
Dad took most things in stride. He’d been through a lot with mom, and figured they’d just get through whatever came along. He called me one day in a moderate panic. “I don’t know what I’m going to do with your mother”. Uh oh. She was “MY mother”…. that couldn’t be good. I asked him what was going on. Seems that whenever a telemarketer called, she’d say “yes” to whatever they were peddling. Anything. Stuff started showing up on the doorstep that was baffling him. When he asked her, somehow he got an answer that involved some “nice person on the phone”. Oy. I suggested unplugging the phone when he ran to the store, or some other brief outing. She couldn’t use the phone any longer, but he didn’t like that idea; he wanted to be able to call her. She wasn’t one to get up on her own, and wasn’t able to wander, so he could get out for up to a couple of hours if he popped in a movie, and helped her to the bathroom before he left; it was their system, and it worked for them. Anyway, he ended up getting a Tele-Zapper, and calling the various vendors of the stuff that showed up; they were understanding and cancelled any subscriptions, and accepted returns of any items.
And don’t call her during a movie. If dad had put a movie in for her before stepping out for a bit, and mom got a call, she’d say “I’m watching a movie. I can’t talk.” Click. Dial tone. Manners? Zippo. It would be a movie she’d seen about a bazillion times, but it was all semi-new to her. She especially liked “The Cutting Edge” skating movie. I used to skate, and she took me to lessons. The town they lived in was a big winter sports area, and skating had always been part of the local culture. She used to sew costumes for local skaters when I was little. She made my little skating skirts when I was four years old.
Thanksgiving often occurred repeatedly in June or July. Instead of trying to force her memory into reality, Dad went looking for pumpkin pie. It might take 3-4 stores, but he’d get it, and make her happy. She’d be clueless a couple of hours later at most, but he didn’t ever want to be ‘mean’ to her.
One trip to some 5-star resort in the Phoenix area got a bit awkward. After finishing lunch, dad went to wash his hands. When he got back to the table, the head waiter and some guy with a tray of chocolate and bottle of champagne were talking to mom. What now? The head guy then congratulated dad on his anniversary (this was in February; their anniversary was in August). They left the chocolate and champagne (which mom couldn’t have with her seizure medication), and left. He called me and asked me what he should have done; he didn’t want to embarrass mom. I told him just don’t show up again at that place for another year. They’d already left the stuff at the table; it wasn’t usable for anyone else at that point.
When the seizures started, dad was dumbfounded at the weird behavior mom displayed. One night he called me all upset. “She’s speaking in tongues again” he half hollered. Huh? We’d all gone to the same church since I was a baby, and while they believed in tongues, it wasn’t a holy roller tongue-speaking crowd. Clapping was considered a rousing expression of appreciation. (Swedes, ya know!). And ‘again’ meant she’d done this before. He put her on the phone. She was making NO sense. He got back on the phone and said she was also taking her clothes off. MY MOM? Stripping for the heck of it? Something was wrong. I told him I thought she was having temporal lobe or frontal lobe seizures, and he needed to take her to the ER. I didn’t know how long it would last, and with her history of the right frontal brain tumor, this needed to be checked. So he got some friends to help load her in the car, and off they went. She was admitted, and started on seizure medication. The ‘religious’ outbursts stopped.
The dementia progressed, and every Christmas I’d see the latest level of decline. She could still talk, but her memory was shot. She transposed past familiar places into the city we would be passing through. “Where is the Talcott building?”. Well, gee mom, about 1200 miles northeast of here…. but I couldn’t just say that; she still had feelings, and now and then would feel badly if she was ‘wrong’.
I had decided to move back home to help dad take care of her. He was so adamant about not putting her in a nursing home, even though she was a full-time job. He wanted to be the one taking care of her. I didn’t want him to be alone in that. One of the last things I remember about her was him calling me to come and “look at your mother”. When I went upstairs and went to the bedroom where she was sitting in her favorite chair, I had to keep myself from cracking up. She had put her wig on backwards, and it looked like a fuzzy ski jump hanging over her nose. I asked her if she was coming or going. She said “It’s really on backwards? He’s not messing with me?”. I assured her it was indeed on backwards. She fixed it. Sort of.
They went on their planned 3-month trip to the Phoenix area for the winter. I was staying in their house as I got used to being back in my hometown (a big adjustment from the friendly South). I had no idea what was going to transpire towards the end of that three month trip. That’s for another post. But I will always remember that dealing with dementia is a very difficult process. Without some humor, it would be soul consuming.