When Time Doesn't Stand Still

Sometimes I have to turn off the phone and put it away. Sometimes, it's so depressing, it threatens to keep me from accomplishing anything the rest of the day.

I'm learning so much from the Parkinson's caregivers support group. But sometimes, the things I read just hurt.

It was so difficult to read about all the spouses who returned to their heavenly homes during the Christmas holidays. A death in the family is difficult any time of year. But how would one possibly survive it happening during Christmas???

Thank heavens, all the group members are compassionate and caring. When my dad died, the online comments I got from so many friends and loved ones, some of whom I'd not heard from in years, really did help. They felt like virtual hugs. And I could go back and read them again when the loss began to sting again.

I hope those who lose someone they love get that same benefit...

Just hours away from the new year, and I read the tale of a woman who had to wait six months to get her husband into his neurologist. Her husband had not been out of the house at all in months due to other health issues. Getting him out of the house was a time hog, and then traffic didn't cooperate. She was 15 minutes late for the appointment, and she was forced to reschedule.

Been there, done that! I schedule an extra hour before I have to get Lizard to one of his appointments. Sometimes, that's not enough. Sometimes, I'm able to get him in the car on time, but then traffic slows me down. I can't call to report I'm going to be late while I'm driving. Lizard can't operate the phone anymore, so he can't call either. I can pull over to make the call myself and be even later, or I can just keep pushing on. This overwhelming experience has happened to us with dental appointments, general practitioner appointments and physical therapy appointments, too.

Sometimes, providers will go ahead and see Lizard. Most of the time, however, we are forced to reschedule.

Many who commented on the post told of it happening to them, too. Most who commented say they never get in to see their medical professional without a 15-minute or longer wait. A few were horrified and suggested a change of providers. And a couple said they are no longer able to do in-person visits, so they are on time for all their virtual appointments. They no longer have the stress of trying to rush someone who cannot rush anymore.

All I could do was turn off the phone and cry.

It takes longer, much longer, to get someone with Parkinson's ready to go outside the house and then into the car, and then into the medical provider's office than it would take a healthy person. Someone with Parkinson's cannot be rushed. Rushing them stresses them, which makes the Parkinson's worse, and it puts them at risk of falling.

People don't die from Parkinson's. They die from falls due to Parkinson's.

With Lizard's latest medical complication, he is even slower in response and movement now than ever before. I have been trying to get him ready two hours ahead of time. That isn't always enough.

Being in traffic stresses him out, even though he is not driving. Waiting in waiting rooms stresses him out, even when there are only two or three other patients waiting. His restless legs kick in, and that's the end of patience.

Waiting in the tiny examination rooms really sets him off. He can't sit still more than about two minutes, and being in such a small space with no room to walk around when his legs begin acting up gives him serious claustrophobia.

By the time they take his blood pressure, his heart is pounding.

Fortunately, most of his providers now understand what's happening with his blood pressure, and they aren't prescribing new meds. Thank heavens!

We can't make do without his medical care if we have to reschedule. Rescheduling is extremely stressful for both of us because we know he can't wait up to three months for another appointment. We see his neurologist every three months, and sometimes that's not often enough. His condition sometimes changes and deteriorates faster than that.

My heart goes out to all who have experienced this. I wish everyday tasks weren't so hard for any of us.

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