Being a caregiver for you loved ones is a strenuous task especially, when your loved ones are ill. It becomes even more difficult when you have to watch the person suffer but cannot do anything to help them cure the problem. All they can do is to be a support system for the ill and help them fight through the illness. This is a must for the care givers of Parkinson’s Disease patients.
Here are some tips for care givers of PD patients. The advice provided is based on the information gathered from Michael J Fox Foundation and Partners in Parkinson’s.
1. Being Organized
One of the most important roles of the care givers of Parkinson’s Disease patients is to keep medical notes, insurance records, appointment schedules, contact information of the medical professional as well as emergency numbers for extreme situations and medication details. Be organized in maintaining these records either by keeping a compilation folder or filing the records in one place chronologically. Keep this folder with you for all appointments and also create a backup of all the files if possible. These records in hand provide a great advantage to the patients as well as care givers.
2. Keep Yourself Healthy
In order to be able to look after another person, one should themselves be healthy both physically and mentally. A strong mind has better clarity and makes certain decisions easy as well as well thought. It is well known that Parkinson’s Disease is a chronic disease and it brings a huge change in the patient’s as well as the care giver’s lifestyle. So, it is important to take time off the basic necessities and look into hiring a professional for better care as well as continuous surveillance. Make sure that the time you take off is well spent without any stress and is enjoyable so that when you come back, you are recharged both emotionally and mentally to reflect the strength onto the patient too.
3. Understanding Medical Insurance
It is really important to fully understand medical insurance and other policies that help in the financial aspects of the patient’s treatment. Parkinson’s Disease treatment can be financially draining unless you have an effective medical insurance that helps you deal with most of the treatment procedures without a big hole in your pocket. Keep reminders of the renewal of the insurance policies and maintain records of the expenses along with all the bills for complete reimbursement without any controversy.
4. Support Group Help
Joining a support group is quite beneficial for both the patient and the care giver. If you find any active support group nearby, make sure you join it and engage regularly with the members. Talking about your condition and sharing your experience with others and vice-versa works both ways in relieving frustration and getting tips and tricks to handle certain situations. Parkinson’s Disease hits each patient uniquely and it is one of the major reasons to share your experience and get to know others’ experiences to understand your situation better and deal with it effectively with least risks.
5. Educate Yourself on Parkinson’s Disease
While there is no cure for this disease, there are several treatment options, diagnosis methods, SOS information and information related to symptoms to deal with the progression better. You can also consult your doctor or get a therapy session for your loved one and accompany them to gain as much information about the disease as you can. A better informed decision is always better than better heard one.
6. Expect and Accept Changes In Relationships
Parkinson’s Disease will bring changes in the life of the patient at some or the other point of time of the disease’s progression. This not only affects the lifestyle of the patient but also of the care givers. In terms of social status and relationships, major changes occur. The patient may get high hormonal variations, get irritated easily, develop dementia and experience abrupt faintness and low blood pressure due to the medications. Due to this, the professional life becomes quite difficult and the social life could become a nightmare. Being the one person to be everything for the patient including social, emotional and mental support system is quite important.
7. Observe And Report Regularly
One thing that is mandatory for care givers is to know that the patient will not observe all the changes that happen in the physical and mental health. So, it is important to keep a close observation on the progression of the patient, analyze symptoms, and report any abrupt changes or drastic increase in any of the symptoms to the medical professional at the earliest.
8. Know Your Rights
Being a care giver is a responsible job. You have to take up the responsibility of the patient’s life from basic diet to life decisions. So, the law provides certain rights to the care givers to help them make the best decision for their loved ones. Parkinson’s Disease is now included in the list of Rights of Persons with Disabilities Bill – 2016 passed by the Government Of India.
There are numerous benefits entitled to the persons with disability like:
- Railway – Permission to travel in the compartment reserved for persons with disability
- Air travel concessions
- Bus travel concessions
- Income Tax reduction benefits
The care givers also get a lot of benefits entitled to any disability. The independence of the patient is now dependant on you and thus your independence is also dependent on how it affects the patient’s life.
9. Talk About The Future
It is quite commonly seen in the Parkinson’s Disease patients that they lose their hopes and thoughts related to the future. They treat the disease as a disability and thus do not focus on the tasks more than the current day of their life itself. This creates scope of anxiety and depression in the patients gradually. So, it is your duty to be there for them and talk to them about their future, your future and both of your futures combined.
Even a little light of positivity can kill a sea full of darkness and you as a support system become that light that helps the patient deal with the struggle through that darkness.