My dad has been taking 22 scheduled pills daily. Most are prescription, with some various multivitamins and low-dose aspirin in the mix. Medicine management is one of the key things that he needs help with. Keeping track of all the random pills and dosage notes is not something he can manage.
We’ve got them currently set up to fit nicely into the 4 times a day pill dispenser. He has alarms on his iPad set to tell him ‘Hey take your medicine!’ but still without someone keeping an eye on things, mistakes are easy. I’ve seen him open a different day/time. I’ve seen him miss the alarm completely. I’ve seen him drop pills and not notice, thinking he put them in his mouth, etc. So while I still separate them into the daily portions to keep things easier for both of us, the real key is to make sure he gets the right ones at the right time.
One encouraging development: we just met with his new neurologist (since moving here) and she told us to stop taking one of the meds, reducing his daily pills to 20. Hopefully this reduction will help with the hallucinations. She was puzzled as to why he was taking it in the first place since the Parkinson’s symptom wasn’t one that was really manifesting with his mix of symptoms. I’m hopeful that this will be a positive change for his treatment, but it will likely take a week or two to have any sense of impact.
Here’s the quick story on how I messed up my kid’s Halloween night.
About a month ago he said he wanted to be a “Ghost Knight” and we started to look at references. Evil knights from older movies, zombie knights from Scooby Doo, the Black Knight from Monty Python, undead warriors from Thor Ragnarok, etc. We settled on a general design and I started working on some pieces trying to think of how best to make it work.
The key part was going to be glowing eyes, so his head needed to fit inside where he could see out but make his face hidden from the outside with red lights in a place that wouldn’t block his vision. So we made the helmet first and it was set up to fit over his baseball cap so that the glowing eyes would be above while he could easily look out from below.
Since I’m home with my dad, it was fun to have a little side project to work on when my dad was napping or using his iPad. I decided to make the armor out of cardboard and paint it with metallic spray paint. Velcro would be used to keep the pieces wrapped around his clothes and the only part I ordered was a toy sword that went well with his knight’s style.
Here’s the interim state of the armor. Helmet, feet and arms not attached to the main suit.
At one point, he was coming home and checking progress, often saying ‘this is so cool!’ Oh what’s that parenting committee? You would like to recognize me as Father of the Year already? Well, if you insist!
Here’s the costume as we put it on after parking in Norwich, VT (Norwich is across the river from our town and does a townwide trick-or-treat that we’ve done the past 4 years.
Uh oh. It seemed to be disintegrating with each step. Below is a dramatization of the costume coming apart.
He was a trooper though, trudging along trying not to make anything else break. Unfortunately the feet were just causing too much trouble, so I said we should rip the feet off his boots to make it easier to walk. He agreed without really saying a word.
As we got close to the first house, he was walking more slowly, his shield now hanging down to his side.
I tried to keep things going.
“Ok here’s the first house! Want to go get some candy?”
The evil knight shook his head no.
“Why not?” The mysterious warrior continued to look at me with his penetrating red gaze, unwilling to share.
“Should we go to the next house?” That got the knight to start moving again, but at a very slow pace.
“Are you ok?” A slight nod.
“Are you upset about the costume?” No response.
“Would you rather go home?” Another slight nod.
While much of the costume was still intact, there were enough random pieces taped or removed that he was just no longer in the spirit of it. He was no longer proud of the costume and had no desire to walk around in something that wasn’t matching the cool ghost knight he had in mind. Ironically, his disappointment defeated me handily, showing just how formidable he could be in battle.
At this point, I have returned my Father of the Year award, and my Parent Fail tracker was beeping triumphantly as I hit what felt like a new personal record.
I apologized that the costume didn’t work out the way we had discussed and we hugged. I asked him about making it up to him and basically settled things down with a nice discussion. On the short drive home, he eventually changed subjects to a new project he started at school and the pain of the evening was fading away.
Still, I fucked up his Halloween. Next year better watch out because I am going ALL OUT and getting that damn award back.
After getting over the pathway to the back deck that I wrote about previously, the next hurdle for my dad to get into the house was the step into the sliding door. At his former home near Tulsa, he had a couple steps both inside and outside that he was able to navigate but this one was slightly higher and also had the sliding door track on the bottom that would likely cause him trouble. The bumpy edges and odd angles can mess with his head as he negotiates the floor, and since balance is such a concern, I wanted to make sure stepping into the house was easy.
So I built a quick middle step that is big enough for his walker so he can get into the house in two stages. Now he can enter and exit the back relatively easily (of course with me still standing near to help offer support as needed). It’s sturdy but I not connected to the deck so I can move as needed when winter comes and regular snow shoveling enters the schedule.
The last big need was a way to get him into the shower. This house has a small standing shower in the bathroom near his room, but the shower floor is raised above the floor about 5 inches, and the shower door track is about 7 inches tall. I was hoping a single step on the outside with a sturdy handle in the shower would allow him to feel confident enough to get his feet into the stall, but it wasn’t enough. I decided to build something that made things easier for him to ease his way in. It’s three steps and has a galvanized pipe handle. It’s working well and he feels good using it but it’s a bit hefty and I can tell that I’ll be working on a V2 model eventually based on how he uses this one.
shower time takes a lot of effort for him, but it’s worth it!
Before deciding to move my dad here in September, we had a lot to think about. We started considering the move around March, when he had to go to a hospital for dehydration and lost a lot of strength. His care needs increased and he needed to have more home health coverage at my aunt’s house to help him through each week. So from March until around July we researched and discussed, and I waffled constantly not sure which way to go.
One key part of the discussion was whether or not he could even physically be comfortable in our place. We rent a home in Hanover due to the small town being extremely high priced with very low inventory, plus my wife still working toward tenure, which keeps us in a temporary mode.
The only way in for him is through the back sliding door (he uses a walker and moves slowly due to high risk of falling). The other ways into the house have big steps and simply not an option.
So the first thing I needed to to do once we committed to this move was to dig up a rocky path on the side of the house to the back deck and make it smooth. You can see the before/after in the photo, but since this is a rental I did it relatively quick and cheap. I think it came out nice though and seems to be holding up ok. Still have winter to test it, but so far it’s better than the rocks.
The most frustrating aspect of Parkinson’s is the inconsistency. Everything can be going great a few days in a row and you feel ready to focus on going another step, but then suddenly you are two steps back. In my dad’s case, physical pain or stiffness can randomly appear in a new location, or his mind might just not make the same connections as before and I struggle to make sense of how best to approach the moving targets.
When he first moved in, I had big plans with a regular weekly schedule, daydreaming that we’d be working together to attack this thing and get over new hurdles. Tuesday and Friday we’d do leg stretches and exercises, Monday and Thursday would be arms. Walks. Showers. But that was way too optimistic and I’ve slowed my pace to allow him more time to adjust to this new place and routine.
Now he’s been here a month and we are generally in a decent daily routine, but the exercises and additional work have been sporadic due to his feeling weaker and/or random pains. I’m doing my best to stay flexible and roll with his ups and downs, but my brain is just having trouble not trying to measure against some sense of progress toward a longer term goal. One day at a time!