The best care is someone who cares enough
I was a caregiver for my mom. She went through a long, slow decline and eventually died of Parkinson’s disease at the ripe old age of 98. She had it for about 20 years, but I only became closely involved in her care once she moved into an assisted care facility when she was in her mid-80s. Although the facility was state of the art and had a very good staff, I learned over time that even the best assisted care just isn’t enough. And although we went periodically to a renowned Parkinson’s clinic, it just wasn’t enough either. Her condition, and most importantly her quality of life, was influenced the most by my constantly paying attention to her condition and, together with her “Comprehensive Care Team”, taking action when needed. I learned through this experience that most people, patients and doctors included, don’t understand the nuances of Parkinson’s disease and the many and varied symptoms and life quality issues that come with it. I believe it is very, very important for the patient to have a close friend or family member who really cares how the patient is doing—someone who cares enough to check in regularly, two or three times a week—who spends enough time, several hours every week, to talk with the patient about what they are experiencing, how they are feeling, how things are changing for them and who pays attention to the minute details of their living condition. Let me explain.
One thing that seemed odd to me was that where she lived, on the Peninsula just south of San Francisco, there seemed to be surprisingly few neurologists available who had any particular experience with Parkinson’s disease. Since she didn’t drive (and later, couldn’t drive) this was a bit of a problem. Fortunately we found a clinic at the Parkinson’s Institute in Silicon Valley, so a few times a year I would drive her there to meet with an experienced doctor. The lack of a nearby doctor with significant Parkinson’s experience was a problem for my mom, and likely is a problem for many patients. This makes the role of a caregiver even more important, as frequent visits with the experienced doctor become problematic.
Our specialist at the Parkinson’s Institute of course prescribed a regimen of medication for my mom. There were a variety of pills that had to be taken frequently and regularly throughout the day. Some addressed the Parkinson’s symptoms, some addressed her various other ailments (e.g., high blood pressure), and some addressed the side effects of the pills themselves. After a while I could tell (through conversations with her and also checking her supply of pills) that she might be forgetting to take the pills as scheduled. After all, the schedule was pretty complicated, and it changed from time to time as her needs changed. So I prepared a pill-taking chart for her to follow. Over time, as her memory progressively faded over the years, we went from my asking her daily if she took her pills, to setting up an alarm clock to remind her to take the pills, to arranging for an answering service to call her each hour she was supposed to take a pill, to paying extra for the assisted facility staff to give her the pills on schedule.
Medication management is critical, and it’s not just about making sure the pills are taken when scheduled. The medication needs of the patient change dramatically over time. In my mom’s case, I first became aware of this issue when she started telling me she was having very realistic nightmares and hallucinations about the staff torturing her, and she had become extremely fearful especially at night. At first I hired a caregiver to stay in her apartment every night to make sure she was OK, but the scary experiences continued. I spoke with the Parkinson’s doctor about it and we decided it might be the medication, since Sinemet can sometimes cause paranoid schizoprhenic reactions. We agreed to dial back the Sinemet, but not knowing how much we could get away with we decided I would pay close attention and the doctor and I would have a weekly phone conversation to review the effects of tweaking the medication regimen this way or that. In about a week, the paranoid delusions went away and my mom could sleep peacefully. Of course, other and more pills were added to the regimen over the years to address such evolving issues as high blood pressure, gastric distress, liver function, anxiety and depression. Each time, the new medication interacted in a nuanced way with not only my mom’s general condition and tolerance level but also with all the other medications she was taking and these reactions changed and evolved over time. Only by someone like me paying close attention and working closely with the doctor to manage the medication regimen were we able to maximize the effectiveness and minimize the side effects of the complex and ever changing pharmaceutical cocktails my mom had to live with. Had we not done this, my mom’s life would have been hellish and she would not have lived as long as she did.
Personal hygiene and clothing are other areas where close attention needs to be paid as the patient’s status changes over time. As the disease progressed, we changed from fashionable clothing to increasingly comfortable clothing that was easier to put on and take off. In matters of hygiene, changes in teeth, gums, nails, hair and skin need to be monitored. Changes in diet too occur over time, things taste differently as more and more medications are taken, and hydration becomes increasingly important. Difficulty swallowing, for instance, was a problem my mom faced, so we made changes to her food and pill texture and sizes, after a while, this problem receded.
And simple human companionship cannot be ignored. The loving presence of a good friend or family member simply cannot be replaced by assisted care staff and the company of relative strangers in the facility dining room. I would frequently take my mom out for a ride in the car, or for a wheelchair spin around the block on a sunny day, or would simply sit with her and hold her hand for an hour or two, even if we didn’t talk much. Even when she got to an advanced stage and couldn’t communicate, I knew that she felt loved and cared for and knew she was not being ignored.
This level of detailed monitoring of the health and welfare of the patient is not something that can simply be left to the assisted care staff, no matter how good they are. They are very busy and simply do not have the time to pay close enough attention. While the staff will likely notice the obvious, the many unique and varied nuances associated with Parkinson’s disease, and their impact on the patient’s quality of life, can only be properly managed by someone who cares enough to really pay close attention to what is going on.
The best care for a Parkinson’s patient indeed is someone who cares enough. That person needs to be a fully engaged member of the “Comprehensive Care Team”.
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