Role of a Caregiver in Early Stage Parkinson’s

If you or your loved one has just been diagnosed with Parkinson’s, the chances are that you must be overwhelmed just thinking about it. Parkinson’s being a progressive illness with no cure available as yet takes a toll on both the patient and the caregiver equally.

There are technically five stages ranging from mild to severe  for Parkinson’s based on specific symptoms identified,  however, there are  no set periods to transition from one stage to the other. The progression of the condition is not consistent for all. For some, it can be immediate, while for others, it could be as long as 20 years or more. However, Parkinson’s can be broadly divided into three stages – early, mid, and late. Each stage comes with its own challenges and hence, the role of the caregiver shifts with every transition as well. Here we are exploring a deep-dive into Early stages of Parkinson’s.

Initial symptoms of Parkinson’s

A common misconception is that Parkinson’s leads to only motor symptoms or challenges in movements. But that is not true. As Parkinson’s progresses it could lead to one or more of the symptoms below

  • Movement-related or Motor symptoms- Tremors, Slurry Speech, Balance, Dyskinesia

  • Non-Motor Symptoms – Depression, Apathy, Constipation, Sleep Disorders, Cognitive impairment

However, the non-motor symptoms may not be prominent in the initial stages of Parkinson’s. The patient might observe mild tremors on one side of the body and gradually as they progress towards the beginning of the second phase- motor symptoms on both sides of the body- during a change in posture, trouble in walking, etc. You could read more about Parkinson’s Symptoms here

The first step of dealing with Parkinson’s is to learn as much as possible about the illness and its consequences to be able to deal with its treatment and management effectively.

Familiarizing yourself with Parkinson’s

As an illness with no cure, Parkinson’s creates a lot of emotional turmoil that could stem from denial, confusion, frustration, or depression. It also creates overwhelming stress on the relationship between the patient and the caregiver. It is a lot to cope with, and the only way to come to terms is to know that you are not alone and familiarize yourself with Parkinson’s and its progression.

Both the patient and the caregiver need to understand the journey ahead and the unpredictability of the illness to begin with. The patient and the caregiver have to be realistic about their future, based on  the current symptoms of Parkinson’s which the patient has already experienced.

It is advisable to discuss with the person diagnosed with Parkinson’s on the path ahead, how to share the diagnosis with your family, whom to seek help from, assessing work-life balance and other responsibilities. Reach out to experienced caregivers to understand their journey and to bolster the confidence of your loved ones on how Parkinson’s symptoms can be managed effectively.

Read more about  Beginning your journey with Parkinson’s .

Communicating with the family

While it is difficult to discuss and share such news to the family members, it is necessary to involve them as soon as possible to provide both physical and emotional support to the patient and the caregiver. The first step above is mandatory to be better prepared.

Plan it with significant others on when to tell your family about the condition. While the decision on whether or not to tell rests  with the diagnosed, it is better to inform loved ones as they may start noticing the symptoms such as a change in walking gait, slurring speech, etc. It is better to be prepared on how much you want to disclose and share regular and honest feedback on the progression of the illness as well. Keep the conversation short, simple, and straightforward when it comes to breaking the news to your children and patiently answer any questions they may have about the progression of the illness.

Read more about Managing Parkinson’s for the newly diagnosed

Role of the Caregiver

In the initial stages of Parkinson’s the patient is more or less independent and can go about their daily activities as usual. However, this is the window where the caregiver should focus on organizing and preparing as much as possible for the journey ahead.

  1. Organizing Medical Records

The first thing a caregiver would need to do is to collect and organize all medical records till date, including prescribed medication, dosages, and reactions if any systematically. The medication and dosage records and reminders can be put into a routine management provision in an app like the Caregiver Saathi App. This also allows the caregiver time for other responsibilities as the illness progresses.

 There are also various templates available online where caregivers could record symptoms routinely to track the speed of progression regularly. This also helps in identifying the changing needs of the patient and the caregiver over the course of the illness. There is also a journaling feature on the Caregiver Saathi App to help in keeping this diary.

  1. Easing the loved one’s schedule as much as possible

In the initial stages, while the patients are still independent, they could face fatigue quickly, and rest is necessary to allow the body to recoup. Dividing responsibilities to reduce the effort from your loved one gradually would help ease the physical stress.

Ensure your loved ones understand why you are doing this by communicating effectively to avoid hurting their self-esteem. They should feel motivated to pursue the changes  earnestly which should be expressed to empower them to deal with the illness in a better manner.

  1. Plan ahead

The caregiver also needs to plan ahead to balance other priorities including work, parenting, etc. to provide time and emotional energy for caregiving responsibilities. You might have to inform at work before-hand to request for flexible hours or remote working options on bad days.

It is also imperative to work with your loved ones at this stage to reduce independent transactions of your loved ones – bank accounts could be made joint, legal formalities to be sorted, investments managed by the patient and other independent tasks should be shared to make the transition smoother.

There should also be a discussion among family members to split caregiving responsibilities. This ensures that the caregiving burden is not too heavy on any one and that your loved one is getting the best of care while not burning yourselves out. You should also plan some time to care for yourself as the journey gets tougher.

The path ahead may not be straightforward, however, knowing you are not alone and by keeping a close support group with whom you can share this journey, and seek help when needed can take you a long way ahead.  If close friends or family are not familiar with caregiving, reach out to a support group for Parkinson’s or support group for caregivers who are in the same journey and benefit from shared experiences, tips or lessons learned, and emotional support.

To know more about mid – stage Parkinson’s and the change in caregiver roles – Click here

About the Author

Shwetha Sivaraman

“I am a corporate professional turned writer. Forever in love with the written word,  I believe that words are evocative and bring magic to life that remains eternal. A compulsive reader and a travel enthusiast, I love meeting new people and exchanging stories. I believe in living life to the fullest by making every moment count and write about travel and life in my blog BeingMeraklis. “.


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