Role Of A Caregiver In Mid-Stage Parkinson’s

Progression in Parkinson’s disease is measured on a scale of 1 to 5 stages, with five being severe. The beginning of Stage 3 is considered to be the turning point or the mid-stage of the condition. With Parkinson’s progression varying from one individual to another, the onset of the mid-stage or the intensity of the symptoms would also differ from person to person.

If you or your loved ones have recently been diagnosed with Parkinson’s, read here on coping with early-stage Parkinson’s.

The middle stages of Parkinson’s tend to be the longest. With the loved one’s symptoms advancing at a faster pace, the role of the caregiver will have to evolve much more quickly to keep pace with the symptoms. This stage is characterized by unpredictability as some symptoms escalate rapidly, thus requiring constant care and attention.

Symptoms

At this stage, several motor symptoms aggravate, such as slowness of movement, stiffness, tremors, and freezing. The patient might lose balance more often and may fall on multiple occasions. The mid-stage of Parkinson’s also leads to fatigue, constipation, and drowsiness during the day. Eventually, the ‘off-days’ (days of presence or increase in the intensity of these symptoms) would start occurring more than otherwise requiring frequent changes to the schedule of both the patient and the caregiver.

While the patient can still take care of day-to-day activities such as dressing, hygiene, and eating, these are much slower. Gradually, patients require more assistance from the caregiver to perform even regular movements. Medication combined with physical therapy helps in managing symptoms at this stage. Physical therapy helps patients with pain management, fall prevention, improved balance, and mobility.

Role of the Caregiver

In mid-stage Parkinson’s as the patient contributes lesser and requires more assistance to perform their daily activities, the responsibilities of the caregiver increase. The additional responsibilities of the caregiver need to be tactfully balanced with other aspects of their life, including work, taking care of children etc.

1.      Communication:

This stage is characterized by a breakdown of communications between the patient and the caregiver. The patient faces increasing issues in speech – softness or hoarseness of the voice and the slurring of speech, among others, which make it harder for them to interact. With the ever-increasing tasks, the caregiver could begin to ignore or not attempt to comprehend what the care-receiver tries to communicate.

Mindful acceptance of the care-receivers inability to speak and the difficulties they are undergoing is critical. The caregiver’s patience to understand what their care-receiver is trying to communicate would encourage them to try harder to speak and communicate better. This could be an opportunity to use speech cards for frequent needs as well as a tablet etc.

Speech therapy and vocal exercises can help improve the quality and loudness of speech. Speech therapy also assists in teaching patients to conserve energy while also inculcating non-verbal communication skills. Ensuring there is less external noise interrupting the conversation, speaking at a moderate pace, and using shorter phrases, can assist in improving communication between the patient and the caregiver.

Communication aids the loved one to express what they feel while enabling the caregiver to provide the right care and attention. For instance, if the care-receiver is feeling depressed or agitated, expressing their emotions to the caregiver could help them respond appropriately. The caregiver could encourage or motivate the patient if depressed or employ suitable breathing techniques to calm the patient down, if agitated. Re-occurrence of similar emotions could also be an alert to the caregiver to discuss them with the doctor to manage and avoid triggers that initiate such sentiments as well.

2.      Managing Anxiety:

This stage is marked by acute anxiety, experienced by both the patient and the caregiver. With more off-days, the patient grapples with the pace of change and withdrawing mobility functions. Heightened vulnerability with lesser control on actions causes them more anxiety and could lead to excessive self-monitoring. Patients may isolate themselves due to depression or shame, undergo panic attacks, and avoid support groups in an attempt to not encounter advanced patients with Parkinson’s.

Anxiety regarding the progression could cause caregivers also to worry more about what is coming next, making it harder to deal with the present.

While it is challenging to keep up, a caregiver needs to be mindful to observe the changes the patient is going through keenly. The caregiver could journal using the CaregiverSaathi App ,to better deal with their emotions as well as help identify recurring patterns and shared periodically with the doctor to manage symptoms better and to get the right treatment.The caregiver needs to be observant to notice small changes in behavior, actions, and mood swings to understand beyond what is being expressed. Such observations could be

Meditation and relaxation techniques could be adopted to help cope with the emotional turmoil commonly encountered at this stage for both patient and caregiver. It could be listening to relaxing soulful music, engaging in mindfulness meditation techniques, or merely focusing on one’s breathing for a few minutes every day. Continuous mindful meditation practice has been proven to manage symptoms better.  There are some recommended apps in the CaregiverSaathi App.

3.      Managing Balance and Preventing Falling:

Given the motor symptoms and loss of balance of the care-receiver at this stage, it is necessary to take precautions that reduce their chances of falling. A few measures to Maintain balance could be by ensuring one hand is always kept free;keeping furniture in fixed spots; avoiding loose wires on the floor, and having well-lit doorways and stairways.

A few minor home adaptions could make it easier for patients to continue doing their normal day-to-day activities. Adaptations could  include installing handrails in the bathrooms;creating half-steps in between big steps; widening doorways, or adding stairlifts to ease their mobility within the house. The caregiver could also consult with occupational therapists who can advise on adaptations necessary for the care-receiver to go about their daily activities seamlessly.

4.     Prioritizing personal needs:

Given the overwhelming nature of caregiving, it is often tiring and burdensome to be a caregiver round-the-clock. It is imperative to take time for oneself to relax and unwind. It could be listening to soulful music, going out for a meal, watching a movie, or going for a stroll in the garden. If stepping outside the house is not an option, the caregiver could always take some time out for themselves when the patient is resting through guided meditations on the mobile. Such breaks rejuvenate the caregiver and give a fresh perspective to caregiving from contemplation and reflection away from day-to-day activities.

It becomes easy amidst caregiving responsibilities to forget one’s priorities and to put life on hold. However, this is not sustainable in the long run. It is necessary to balance one’s routine alongside caregiving responsibilities. Simple routine management techniques such as those available in CaregiverSaathi App can help ease this burden with timely reminders for all necessary tasks.

Given that the mid-stage of Parkinson’s is the longest,the caregiver should remember to stay connected and communicate with well-wishers and family regularly. The caregiver should not hesitate to seek help from close friends and family when required to ease the journey. Alternatively, the caregiver could also be a part of support groups of other caregivers that are on a similar journey to mutually learn and share experiences.

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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