When Dad was diagnosed with Parkinson’s, he was already showing a decent amount of symptoms. After the diagnosis, we as a family did some research about disease progression and made our decisions based on a primary goal.
Keep his quality of life as high as possible.
That meant meant keeping him at home as long as we could. If we could keep him safe and happy, that would count as a win.
We did a lot of the conventional things you would expect but we also did some things that weren’t initially obvious. Dad was always a planner and he was way ahead of the curve on things he would need. This is our opportunity to share some of the things we did.
1. The Bed. As the disease progressed, he grew weaker. We purchased an adaptation for the bed, a frame of various bars and gates, that allowed him to get in and out of bed by himself (some of the time)
2. Internal cameras. Mom was Dads primary caregiver. It’s easy to forget how much toll that being a caregiver takes. While he often could get himself out of bed, often he needed help. Internal camera with an iPad let Mom step away, have breakfast, do laundry, take a moment for herself while he slept. It is trading privacy for convenience and everyone needs to make that decision for themselves.
3. Key box. Build a good relationship with your local fire department. They are crucial after falls when they fall and can’t get back up. Our fire department asked us to put up a coded key box so they can get in.
4. Echo Dots. Amazon sold these buttons that look like they were from a gameshow. We purchased several of these and set them up in every room of the house. Then we set up a routine that said ‘Need help in [room of the house]’ on every Amazon device in the house. Think of it as a localized panic button. This is very helpful and eliminated a lot of screaming for help.
5. Speaking of Amazon devices, we set those up too. Trying to dial a phone with his hands became very difficult. With an Amazon show, he was able to call any of us just by asking. If you name the devices differently (Alexa, Amazon, Echo), it helps to make a label for each device with its name. Eventually calling out to the devices became more difficult (Alexa kept being pronounce Alex-ee-ah) but they seemed to work most of the time.
6. Medically, our parents were incredibly well organized. They kept a running log of vitals, symptoms, events and they were lucky to have Doctors that were engaged and willing to partner with them. It wasn’t truly just luck, they were decisive when a provider wasn’t up to their standards.
The spreadsheet they kept unhand at all times covered procedures, medication, reactions, a list of their providers with contact info and a myriad of other things. The times they had to go to the hospital, this information was extremely valuable.
This is going to keep going, we’ll go into home automation strategies (what worked and what didn’t). How did we deal with changing symptoms and personality changes, whatever comes to mind.
This is a cathartic endeavor for us and we hope our experience helps the next folks going through this.
-Rachel