CARE FOR THE CAREGIVERS
As Parkinsons not just being a neurological disease but also progressive in nature has a debilitating impact on the psychological aspect of not just the patient but the caregiver equally. Caregivers can be your wife, children, grandchildren who would be standing by you taking care with love and compassion. Mental and physical health of the caregiver is crucially important for his/her personal growth as well as the commitment for standing besides you in difficult times. This daily grid is the main reason the caregiver ignores their personal health, sleep and diet which may result in caregiver burnout. So it’s very important to think about the caregivers in terms of a better present and future life.
In majority of the cases these caregivers are being neglected. That’s what the research says not only in Parkinsons but even in all other neurological cases where the patient is dependent on the caregiver.
How it affect the caregiver:
Hampers social relationship  |
Quality of life gets affected |
Mental disturbance |
Reduced recreational activities  |
Adds financial burden  |
Fear of falling sick  |
Physical health complications |
Leaving the job  |
Change in relationships |
How can the caregiver deal with it :
⦁ Financial Planning :
Caregivers should discuss financial planning with the patients. Discuss about the medicine expense, hospitalization charges, stability, liabilities and other major expenses with the patient. Parkinsons also affects the psychological status of patient so it would be helpful if things are documented well in advance
⦁ Get some help :
See to it that you don’t overwhelm yourself with all the work. If possible try to get some domestic help for daily chores or help for dealing with the patient. It will keep you in a better mental state when you know you can rely on someone in difficult times.
⦁ Educate yourself :
Learn about the disease , try to know about the prognosis of your loved ones , have a frank discussion with the medical professionals who would be dealing with his/her case.This all will help you to get mentally prepared for the future which is very essential.
⦁ Patients signature changes:
With time there would be changes in handwriting so it would be always advisable to do the needful changes on the legal documents in advance.
⦁ Do not neglect your health:
As a caregiver if you have to firmly stand besides your loved one first you need to take care of yourself. It might seem a bit selfish to nurture your needs when your loved one is suffering but that’s important for your mental health.
⦁ Join some laughter group:
Caregivers can join laughter therapy which has shown great positive effects on patient and caregiver such as improving the mood, reducing anxiety , improving voice quality, exercising the facial muscle.
⦁ Physical strength is very necessary:
Caregivers will be bound to do strenuous physical activity if the patient is physically dependent on you. Like transferring the patient, turning him/her in bed, lifting them, cleaning up diapers, feeding, taking them for a round on the wheelchair. This would be definitely hard on you. You need to spend some time daily on back, neck and shoulder exercises which are the areas most prone for injuries.
⦁ Get some psychological help:
As a caregiver if you start feeling depression or stress please do not hesitate to go for counselling. If you are a close relative of the patient this is bound to happen as your role would be changing. Someone might be dependent on you the whole time. You would be losing your quality of life. You might have a feeling of giving up on everything. Staying mentally stable is crucial in this situation, seek external help or advise .
⦁ Bring positive energy in your house:
Play music which you might feel peaceful. Any religious chanting or meditation music can also help to change the vibe. Bring natural sunlight inside the house and have good ventilation.
⦁ Speak it out to someone:
It is a difficult situation where each day would be hard on you as a caregiver. It especially gets very difficult if you are closely related to the patient and you have to see them in pain every single day. Sharing your thoughts, stress, with someone else will make you feel better and prep you for the next day.
References :
- Haresh Kumar,1 Shahbaz Ansari, Severity of Caregiver Stress in Relation to Severity of Disease in Persons with Parkinson’s Cureus. 2019 Apr; 11(4): e4358
- Rozina Bhimani ,Understanding the Burden on Caregivers of People with Parkinson’s: A Scoping Review of the Literature St. Catherine University, 2004,Hindawi Publishing Corporation Rehabilitation Research and Practice Volume 2014, Article ID 718527, 8 pages
- Debra swedberg decaro, msw, Laughter yoga, adults living with parkinson’s disease, and caregivers:a pilot study, may/june 2016, vol. 12, no. 3, 196-199
- S.Krishnan, Coping With Caregiver Burnout When Caring for a Person With Neurodegenerative Disease: A Guide for Caregivers,P805-807, APRIL 01, 2017.