Tag: parkinsons

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The best timing, or the worst?

march
The month of march turned out to be terrible timing for so much change

In early February I was looking ahead to the summer at our plans to visit Tokyo. Knowing I’d need to find temporary arrangements for my dad while traveling, I looked around the area for respite care options. This coincided with the recognized need that eventually my dad would need to be in a different environment as his Parkinsons continued to progress, since I can’t hire a second helper to be around all day and if his mobility got worse I’d be stuck. Doing a respite stay as a trial of a facility was part of the thinking.

After finding a very nice assisted living facility across the border in Vermont, I had the feeling that a move there sooner rather than later might actually be the better decision. Bigger hallways and brighter, warmer rooms. Nurses available on-site and visiting medical team from Dartmouth-Hitchcock every two weeks to avoid needing to leave for primary care visits. Very nice, easy to use shower. Aside from the financial aspect, it seemed to me that being there could open him to more consistent stimulation, having more people around and better options for exercise and food.

We discussed the benefits and costs. And the costs were tough to swallow, but we ended up continuing our investigations and I took him to visit one day. He felt comfortable there and the benefits became even more real. We decided to make the move and set it up for March 10.

As March started, the Coronavirus news was building and my daughter’s high school trip to Spain got cancelled, but I kept focused on making sure the move would go smoothly and all things were in place. I wrote up detailed information about his daily routine for the nursing staff to reference, filled out all the paperwork and prioritized the move itself. I moved one carload of stuff on the Saturday before his move to get a headstart and have some things in his new studio apartment for his arrival.

On the morning of the move, I loaded up the car, got him dressed up and we got him settled. I put together his bed and chair, organized his clothes and everything and the friendly staff made sure he was taken care of. I made a few trips that day to make sure he had everything he needed (it’s only a 25 minute drive from our place).

I visited again on Wednesday morning to see how the first night went, make another delivery of supplies and built a rolling table, continuing to just get settled. Everything going great so far!

The next time I pulled up with a small bag of stuff, there was a note on the door that visitation was RESTRICTED. The director didn’t have my email address on his list yet, so I didn’t get the notice sent out the previous night. I understood and was happy that they were taking strong precautions to protect residents’ health.

But now I have to wonder: Do I have the BEST timing ever, getting him into a facility that can provide 24/7 care and all the other benefits before our new Coronavirus rules happened? Or was it the WORST timing ever, creating an indefinite wall between us? Who knows when I’ll be able to visit again, and it’s hard to keep that little voice in my head from asking ‘what if’ each day.

I’ve been checking in on him regularly and he seems to be taking it easy, liking the staff and food. He also got a referral for physical therapy that will happen at that facility so overall I should have no concerns. But what if?

The other aspect of the timing: Now that he is in the new facility, I was going to be looking to work again. Hahahahahahahahahahaha…… ugh, definitely worst on that front.

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Angry Voice?

Beeker fighting a toy
this was #1 for ‘conflict’ on unsplash and i had to just go with it!

Tonight was interesting. I was getting my father ready for bed and he said something I didn’t understand. I spoke up and said “What did you say?”

Please understand my father wears hearing aids, and the Parkinson’s interferes with communication regularly.

He suddenly responded “I don’t know why you’re mad at me. Never mind!” and I was slightly stunned.

Partially because I rarely raise my voice in anger – I rarely get angry in the first place. But also because it was an entirely innocuous scenario with no opinions involved. I realized that despite the known hearing and communication problems we’ve had for close to 3 months, he was misunderstanding my volume as emotion sometimes.

I waited until things settled a bit and clarified for him “I promise I will never raise my voice in anger, and if I’m suddenly louder it’s only in hopes of making things easier to hear.” He understood, but it was a bit weird for me. One of the most dissatisfying aspects of this disease for me is that randomness of losing my sense of who my father is, and also realizing he doesn’t process me the same way either. The combination of physical and mental decline regularly creates a person who is no longer the father I remember and our relationship loses any feeling of shared history. He’s never known me to yell in anger, or even be emotional in any way, yet suddenly he is feeling like I’m reacting to him so negatively.

Earlier in the evening, he urger me to come to the living room. Once there, he asked for a flashlight with a voice in emergency mode. I calmly asked why. He said because “Mom dropped something under the table and needs it to see.” My mother died in 2010. So I held his hand and patted his side a bit until he looked directly at my eyes. I said, “It would be nice if Mom were here and dropped something huh?” and he realized the situation and responded “Yes it would.”

Fuck Parkinson’s

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The hard talks

bed in medical facility
talking about medical care needs as my dad’s disease progresses is tough

My relationship with my dad is good, but we’ve never been great at having serious, important conversations. And now with his hearing difficulties and the communication & thought processing ups and downs thanks to Parkinson’s, those kinds of conversations are even harder.

That said, my father and I previously had a discussion about advance directives to make sure I knew his wishes if something sudden were to happen. As expected, he clearly didn’t want to suffer long term pain, nor be kept alive if his condition required extreme measures. With that out of the way, I felt like we were in good shape.

But over the past couple months, I realized I was having stress related to the balance of helping him enjoy the time he has vs making choices to extend life. For example, he really doesn’t eat well when left to his own choices. If I weren’t here to police him, he’d order fast food often and eat sweets constantly. Plus he’d probably drink whiskey every night.

But for me as his caretaker, that mix of wanting to make him happy but also make good choices for him was really weighing on me. Much like taking care of a child, you want to find the right balance. However, with an aging parent suffering from a progressive disease like Parkinson’s, the long-term decisions aren’t exactly the same. He will definitely decline over time, so where is the right balance of quality vs quantity when the remaining time is understood to be limited but unpredictable?

I decided to just outright ask him the other day by giving some hypotheticals. I asked a series of questions such as “If you could live another year by not having ice cream every night for dessert, would you want that?” Over that discussion it was clear to me that I shouldn’t stress and be proscriptive about diet and how he spends his time. He wants to enjoy his time and not hate his daily regimen.

He still definitely eats more healthily than he did prior to moving here, but I’m not going to force anything he doesn’t like to eat or be too strict on the desserts/snacks.

The other point of stress for me was that it wasn’t clear to me that he knows I would prefer working if possible, and that I’m giving up part of myself for this situation. I know it’s not about me and understand I chose this path. But he sometimes makes random little comments teasing ‘well, you don’t have to worry about that since you’re not working’ that would be extremely annoying to me. So I also brought that up and he understood and we cleared the air on that topic, so I feel better about things for now.

 

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Drug pusher

elaborate meds dispenser box
lots of pills to keep track of

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.

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Getting ready part 2


simple but does the trick

simple but does the trick

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!

shower time takes a lot of effort for him, but it’s worth it!