Caregiver’s Corner is meant to be a resource and safe space for those caring for people with Parkinson’s. All our contributors have loved ones of their own with PD, and are sharing what they have learned along the way to benefit the rest of our community. This column will post the 4th Tuesday of every month.
Darlene’s Parkinson’s disease initially manifested itself with a quiver in her lip and progressed over 25 years to symptoms serious enough to warrant entry into a hospice program. As her caregiver, I have witnessed a decline characterized by relatively sudden (typically within months) onset of new symptoms followed by relatively long (typically years) “plateaus” of stability. We learned through education about the disease and by comparison to others suffering with it that each person will likely have a unique progression as well as a fairly unique presentation of symptoms (e.g., falling, trouble swallowing, dyskinesia, cognitive impairment, etc).
Entering a new period of stability is where the caregiver and the team of medical professionals have some important decisions to make about the direction of the “plateau” period to follow. I would advocate that there is an opportunity at each of these junctures to set a direction that can be the best possible course of action under the circumstances. This is no time to be fearful of change to the caregiving routine, for only by experimenting with changes will the most effective course be found. The most effective course will be the best outcome for the patient and the caregiver. I’ll explore some of the decisions we made under this framework. Some will seem like “no brainer” decisions while others were a conscious effort on our part to affect the next period of caregiving in a positive way.
Varying Sinemet dosage was one of the “no brainer” actions taken by Darlene’s doctors. This was clearly helpful to make sure that she could move about over the longest period possible without “off” times, but it was also important to control the dyskinesia associated with taking the medicine. We’ve adjusted her dosage numerous times over the course of the disease with great results. It has been important to monitor the intensity of her dyskinesia and to advocate for her and to communicate with her doctors so that she could be made as comfortable as possible. Similar experiments with Midodrine dosage and associated blood pressure readings were also attempted in an effort to minimize falls. The outcome of this effort was, in my view, not as a clear-cut success as were the Sinemet dosage changes. However, it was a logical step that may have provided benefits; without trying, we never would have known whether the changes would have been beneficial.
Another symptom that presented great challenges was sleep disruption. For a period of time, Darlene would wake during the wee hours of the morning and insist on getting up. I tried to accommodate this for a time, but the disruptions soon became a bad habit negatively affecting both of us. Darlene would often sleep throughout the day and I would struggle to function during this period. Again, medications were part of the solution, but as her caregiver, I took a stand that sleep and other routines were too important to leave as unscheduled activities. I insisted that she stay in bed (I did put a small television set in her bedroom as a pacifier) and she eventually started sleeping through the night. I strongly believe that schedules for sleeping, eating, showering, exercising, and most obviously, taking medications are critical to handle this disease. It’s all too easy for the caregiver to begin “running around like a chicken with it’s head cut off” if routines are not instituted and maintained.
In the realm of exercise, one of the few ways that the patient can affect the course of Parkinson’s, we only had partial success. After hearing about the numerous benefits of exercise for controlling Parkinson’s symptoms, I strongly urged Darlene to maintain an exercise routine. Ultimately, she has only been able to sustain a weekly routine with in-person instruction. Lack of interest in exercise and what I believe is Parkinson’s-induced apathy, clearly have been roadblocks to getting more benefit from it. Also, for Darlene who is a very social person, doing an in-person class with the attendant social interaction made doing some exercise palatable. Voice therapy, which included completing the “Speak Out” program and joining a “Loud Crowd” group ultimately failed after several attempts. Again, I felt that apathy and a failure to grasp the importance of these wonderful programs were the root causes. I firmly believed and urged Darlene to embrace voice therapy only to see Darlene’s commitment wane after a period of months. With a different person, with a different set of predilections, I am confident benefits would accrue. The main point here again is one will not know what can be done without being open to trying new therapies.
The most challenging Parkinson’s symptom to deal with for us has been frequent falling. At her peak, Darlene would fall nearly 30 times per month, essentially averaging a fall per day. Typically, the falls would happen in clusters as contrasted with a steady distribution across the month. There is nothing more disconcerting for a caregiver than to hear a crash in the next room from a loved one’s fall. After a period of time, I became “on edge,” angry and resentful, because it seemed to me, that most of the falls were preventable. Indeed, reaching, stooping, walking while carrying objects, walking without a walker or cane, and other unsafe habits accounted for most of Darlene’s falls. Many of the falls occurred in close succession and were accompanied by admonitions from me and others not to repeat the unsafe behavior, only to have it recur shortly thereafter. As it was explained to me, many Parkinson’s patients exhibit impulsive behavior, essentially bypassing good judgment, and thus really cannot recognize these unsafe practices as a problem at the time. Ultimately, when we could not lower the number of falls through persuasion, I realized that either I would have to accept this as a non-solvable problem or come up with a new approach. We now have alarms on Darlene’s bed and chairs; she cannot move without an audible warning as she gets up. I also cannot leave her alone, even for short periods of time, necessitating having aides when I need to leave the house. Neither of us is satisfied with this arrangement. Darlene feels like a prisoner and I still harbor disbelief that such a “simple” problem is so vexing. It constrains freedom for both of us. However, I believe we have arrived at the “best we can do” on this issue.
Getting help with caregiving has been critical for both of us. Thankfully, Darlene has been very receptive to this and we have “dialed up” assistance as her symptoms have worsened. Darlene attends adult day care two days a week and we have employed a couple of aides who help us on three days, currently for four hours on each of those days. This has been a tremendous boon for both of us; she enjoys some time outside the home and the company of others, while I get time off to relieve stress and pursue some other interests. Quite frankly, the old adage that “absence makes the heart grow fonder” rings true for us. This has been a critical component of our ability to stay in our condo, and I encourage others dealing with their own set of circumstances to consider the very positive effects it brings. In my opinion, it can also make sense from a financial viewpoint. With little or no help, one may not be able to stay at home; depending on the circumstances, assisted living or skilled nursing environments would likely be far more expensive options. Most importantly, it is just not reasonable or feasible to provide ongoing caregiving with no time off.
I have touched on a few of the many symptoms and associated challenges Parkinson’s disease presents. As a caregiver, I am lucky to have found “sympathetic ears” within my family, friends and the support groups I have joined. Support groups are especially valuable as a way to get practical tips for handling situations, a way to “let off some steam,” and to get a better perspective on how you are doing as a caregiver. It is especially gratifying, but not surprising, to discover that members of support groups care deeply about the welfare of their members and very much appreciate suggestions and counsel coming from the interaction. Please consider trying one out if there is a hint that a group would be beneficial for you.
In closing, I encourage all caregivers to embrace change as overriding philosophy when dealing with this disease. Do not let inertia or “paralysis by analysis” keep you from experimenting with potential solutions to the many thorny problems associated with caring for a person suffering with Parkinson’s. It simply does not lend itself to formulaic solutions; try to find what works and be open to some ideas outside your zone of comfort.