Contributed by William Hicks
The following discussion may help to ease some of the challenges of PD care-giving:
- Monitor care receiver tasks. Be cognizant of those duties the care receiver performs and watch for signs of inadequacy. Do not let bills go unpaid for months before stepping in. Collect and safeguard all tax documents. Understand the sequence of periodic car and home maintenance. Monitor medications closely to ensure that the care receiver does not decide to do something unsafe and be prepared to step in when they are no longer able to reliably self-medicate. Be organized so that any outside caregiver understands your routine. Be prepared to assume additional tasks to avoid unnecessary work later. But…
- Each task you assume is one more loss of independence and self-worth for the care receiver. Recognize that he or she may resent the intrusion or fight to retain responsibility. It may be helpful to start discussions early, while rational discussion is still possible, regarding your assuming tasks. You might ask the care receiver to show you how the task is accomplished to ease the transition. That tactic may not work, in which case you may simply take over the chore. It is imperative that the caregiver understands how to most effectively work with the care receiver to achieve the desired outcome. You must be strong when the outcome is important.
- Do not expect acknowledgment for your efforts as a caregiver. If words of appreciation come, savor them, but recognize that the care receiver will likely not acknowledge much of your caregiver efforts and sacrifices. Even if the care receiver recognizes and appreciates your efforts, the care receiver may not be able to express their appreciation.
- Keep children and siblings in the picture. It is important that those close to the PD sufferer remain aware of the changing condition of their loved one. Do not try to “protect” them from the reality of PD. Do not let them be surprised by “how mom/sis has changed” when they come for a visit after a long absence. By remaining aware of conditions they will be more able to accept the PD suffer as they are and much less likely to react poorly towards you or your care receiver. Also, as appropriate, keep them aware of your contingency plans, power of attorney arrangements, living will arrangements, etc. They may need to take action and foreknowledge will prepare them for the eventuality.
- Recognize that your job as caregiver for a PD sufferer will grow over time. While continuing all the responsibilities you previously shared, you will assume added tasks of caring for both the care receiver and you. It may be useful to list or catalog the tasks, particularly if the care receiver was independently responsible for many tasks. Moving forward, you will no longer be taken care of or told what to do and when to do the important tasks of life. It is a hard reality, but one best accepted sooner rather than later before you are compromised by possible anger or depression.
- Join and participate in a PD caregiver support group. Through group discussions and sharing you will realize that others are facing the same challenges and fears that you face. Many strategies and coping mechanisms will be discussed. Through the discussions, you will gain a better understanding of yourself, your fears, and the skills required to complete the tasks that make up your job of caregiver for a PD sufferer.
- Take care of yourself. Care giving is stressful, frustrating, time consuming and will cause sleep deprivation. You must remain strong for the long haul. Ask for help, exercise, focus on adequate sleep, and maintain joyful activities in your life, even if you must hire a caregiver to give you the time.
- And finally, remember the Serenity Prayer:
“God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.”
More from Bill to follow…
Contributed by William Hicks
The first and arguably the most important skill for success as a caregiver is to understand how to motivate and facilitate the care receiver and to understand your own reactions to care-giving. Just as the caregiver role expands, the role of the care receiver shrinks. Due to cognitive issues, they may not understand the reasons for the reduced role or willingly accept it. Also, due to cognitive decline, having a rational discussion regarding the shifting roles may not be productive or lead to the desired outcome. The PD sufferer becomes more and more childlike, yet unlike a child, will not mature over time. “I have to do more and more, I get more and more frustrated, and I dislike myself for it.” “I was so mean to _____ the other day and felt so badly after it was over. I know that ___ felt badly also.” How many caregivers have said these words or had these thoughts? These concerns may indicate that the caregiver is human and caring and/or does not yet understanding the scope and conditions of their care-giving job including the necessary tasks and skills. The following discussion may help to ease some of the challenges of PD care-giving:
- The care receiver is probably not being difficult on purpose. Accept that he or she simply cannot help how they react. Similar to a child, they may take actions or refuse to take actions in ways that make no sense or are aggravating. The caregiver must be the adult in each situation.
- Understand and accept the role reversal. If the caregiver is caring for a parent, the parent-child relationship is reversed, but the parent may not see or accept that. When the caregiver is a spouse, the roles of the marriage relationship may be reversed and evolve to a parent-child relationship. The care receiver may not see or accept this role change, but the caregiver must recognize his or her changing roles and responsibilities and act accordingly. “Business as usual” won’t work.
- All care receiver activities will take longer and can be frustrating. Allow additional time and expect delays in their getting up, getting dressed, eating, bathing, and getting ready to go out. Recognize that decisions regarding clothing or accessories may not make sense or may be redone several times. Don’t get frustrated and don’t expect the care receiver to hurry or feel your anxiety towards being late. They won’t—and your pressure and criticism will not help. It will only increase your level of stress.
More to follow…
Contributed by William Hicks
The following comments and advice have evolved during my ten plus years as a caregiver for my dear wife with Parkinson’s Disease (PD) along with insight gained from participation with several support groups for PD caregivers or PD sufferers (care receivers). Needless to say, the thoughts and conclusions are mine alone, but I hope they will be of help to the many PD caregivers who often feel “all alone on a windy corner.”
Being a PD caregiver is a mixed labor of love, commitment, and obligation. It is also, however, a job that requires certain tasks and skills to be successful. Many of us become caregivers without a clear understanding of the tasks involved and lack some of the skills necessary to successfully complete the tasks. Adding to the challenge is that most of us caregivers are spouses or children of our care receivers, which may hinder our ability to do our jobs objectively. I will discuss some of the tasks and explore some of the skills that may make care giving for a PD sufferer more successful and more satisfying for both the caregiver and the care receiver.
PD is a challenging condition that affects both the motor control and the cognitive capabilities of the sufferers. PD is really a syndrome that affects each sufferer differently. The progress of the individual symptoms is different and the severity of each symptom may be different for each sufferer. However, PD never gets better. There is no remission or cure. We are caregivers for the long haul. Thus it is important for the caregiver to understand the progression of PD in their care receiver and accomplish the care-giving tasks accordingly. All of the subjects in the following discussion will not affect each PD household equally or on the same schedule. However, the household caregiver should be aware of each subject and objectively confront each challenge as it develops. Ignoring the issue will only make the ultimate response more difficult.
The caregiver must become the primary household manager. The caregiver will assume management of not only the care receiver and their medications and medical interactions, but also many household tasks that had previously not been the responsibility of the caregiver. Many caregivers have had little experience with some required tasks and thus have not developed the necessary skills to successfully complete those tasks. More importantly, they may not envision themselves “in charge” of the new responsibilities and may feel challenged or intimidated. Compounding the difficulties of this new role is the fact that PD progresses slowly so the shifting of responsibility will also progress slowly. The care receiver did the taxes last year but cannot do them this year and the caregiver does not even know where the records necessary to complete the return can be found. Similar situations arise associated with bill paying, medications, dressing, shopping, cooking, laundry, and all the other tasks of household daily functioning.
You may want to accompany the person you care for at doctor’s appointments
to take notes. This helps to ensure that you both understand the
recommended medical course of action and gives you the chance to observe the
interaction between the two.
Following are some tips for improving communication with care recipient’s
1. Write down any symptoms or side effects that your care recipient may be
experiencing, along with other pertinent information (time of day, what they
2. Also write down any questions that you may want to ask, or any concerns
that you have. Regardless of how insignificant you may feel the doctor may
think it is, ask!
3. Ask about any possible side effects your care recipient may experience
while taking prescribed medications.
4. Ask if any new medication will interact negatively with current
5. Make sure you know the correct spelling of each medication your care
recipient is taking, the dosage and how many times a day they take it.
6. Ask for recommendations regarding taking a medication, i.e., should it be
take with food, at what times and what to do if a dose is missed.
7. Ask for storage instructions for each medication, i.e., in the
refrigerator, in a medicine cabinet, etc.
If your care recipient is limited in their physical abilities, ask the
doctor about the possibility of having physical, speech, or occupational
therapy. You should also ask about assistive devices that are available.*