Recently I came across this article of tips for Parkinson’s caregivers. It was written in 2015 by a social worker with the Muhammad Ali Parkinson Center (MAPC) in Phoenix. Except for suggesting that readers contact a social worker at the MAPC, there is nothing Parkinson’s-specific about these tips.
The seven tips include:
1. Don’t compare yourself to someone else.
2. Evaluate your self-talk.
3. You do not have to do everything yourself.
4. Listen to those who know you best.
5. If you recognize that there needs to be a change, act on it.
6. Seek help from others to make a plan.
7. Be agreeable to change your plan.
Tips for the Caregiver
Nancy Bivins, LMSW
Southwest Parkinson News
Following the diagnosis of Parkinson’s disease, as the care partner, you will find that your role changes over time. You may, for instance, need to assume the task of writing checks if your loved one has a tremor and writing is difficult. Taking on that responsibility is relatively easy and life goes on with little or no lifestyle disruptions.
As the disease progresses, the amount of assistance that is needed will also change. You will find that as needs increase, responsibilities and tasks are shifted to the most logical person, you. You may be the spouse, adult child, significant other or friend, but whatever your relationship, you are the most important person in the life of the person living with PD (PLWP).
This shifting of responsibilities is a gradual process and it is easy to understand that over time you may become overwhelmed without realizing what is happening to you. If you find that you are having feelings of needing help to manage, please consider the following tips.
1. Don’t compare yourself to someone else. We certainly can learn techniques and strategies to cope with stress, but keep in mind that we are all wired differently. Some are naturally nurturing and patient, while others find it difficult. Also, care partners may have health issues of their own. Just because others are managing in a particular way does not mean that you must do the same.
2. Evaluate your self-talk. If you find yourself thinking or saying phrases like, “I’m exhausted,” or “I can’t go another day,” it is time to make some changes. Listen to what you are saying and then spend some time to understand what this means for you specifically.
3. You do not have to do everything yourself. Identify what needs to be done to keep your household running and then ask yourself these questions: a) Does it really need to be done? b) Am I the only person who can do it? c) Can someone else do an acceptable job? You may decide that the responsibility that has been tended to weekly may fare well if done only once monthly, or that the job could be done by someone you hired, or perhaps a friend could help. Remember, it is permissible to enlist the help of others.
4. Listen to those who know you best. If your family and/or friends are expressing concern for your wellbeing because they believe that you do not have adequate relief from your physical, emotional and mental demands, it is wise to carefully consider their perspective. There is a saying, “it is difficult to see the picture when you are part of the frame.” Sometimes those closest to you can have a better understanding of your needs then you, because you are so close to the situation. If others are saying that you look tired and stressed, take their concern seriously, don’t just
5. If you recognize that there needs to be a change, act on it. Although you and others may know that there needs to be a change it is easy to delay action, because you don’t know what to do or where to start. Keep reading.
6. Seek help from others to make a plan. There is no such thing as a “Parkinson’s Plan.” Your situation is unique because you and your loved one are unique. The plan for you may be as simple as a leisurely walk and a drink in a coffee shop to relax and recharge. Perhaps a short getaway over a long weekend for rest and relaxation is adequate. However, if a more complex intervention is needed a meeting with the social worker at the Muhammad Ali Parkinson Center (MAPC) is only a call away. The social worker is available to help you and your loved one develop a plan that is specific to you. You may be at the “fact finding” phase of your plan, which involves talking about your preferences, learning about different care options, and understanding the differences in cost.
For many people, the only thought that comes to mind when they hear the words “care options,” is that of people sitting in wheelchairs lining a long hall. Since the population is aging, many different living possibilities now exist, along with many home care agencies that can augment care in many ways from taking your loved on an outing to preparing a meal. All of this for the purpose of keeping your loved one safe, as active as possible and socially engaged.
7. Be agreeable to change your plan. Most likely you will change your plan more than once and possibly frequently. Be flexible, open to continuous evaluation and willing to change as needed. Remember, you cannot steer a parked car.