You’re a better caregiver than you think

CHENNAI: Being a primary caregiver of a sick loved one takes a toll. When the loved one happens to be living with Parkinson’s, a neuro-degenerative disease that affects the central nervous system, the challenges multiply.

The risk of developing Parkinson’s begins when you cross 60 years, and it affects movements drastically. They require assistance even for simple tasks. Unpredictability of the disease, its progression and the different manifestations of the symptoms are some of the hardest part of care-giving

While the gravity of the disease cannot be dismissed, caregivers often feel the brunt of it, adversely impacting their physical and mental health, which also affects the care they give.

Physically taxing

“Patients with Parkinson’s have difficulty in moving. Sometimes it takes more than one person to support them. In most cases, since the patient’s spouse is the caregiver, who is also old, he/she might not be physically strong enough to bear the weight of the patient,” said Dr Bruno, assistant professor of physical medicine and rehabilitation, National Centre of Ageing.

So, some caregivers develop back pain, shoulder pain or even spasms in their arms due to providing support on a regular basis. “Since Parkinson’s patients have a higher risk of dementia, their speech is not clear. This makes it difficult to understand them. Even the facial expressions are very unclear so caregivers find it very difficult to manage their symptoms,” he pointed out.

The adverse impact of Parkinson’s can be seen only in the last phase. Though symptoms could be minimised and treated, the disease cannot be reversed or cured. “The gait and balance can be improved with medication only. But rehabilitation is very important, and this is where caregivers must be trained well,” added Dr Bruno.

The ever-present guilt

“I felt like I was not taking care of him well because he wasn’t getting better. He would sometimes not respond, and then suddenly, scream at me if I moved his bed sheet even a little bit. I started feeling hurt because of his behaviour and blamed myself all the time. Whenever I spoke about it to anyone, I felt guilty that I was constantly complaining about my husband,” lamented a 63-year-old wife, who is also the primary caregiver of the 72-year-old man with Parkinson’s.

Dr Ravi Santosh, consultant, Mind & Memory Care, Athulya Senior Care, explained that Parkinson’s patients could become bedridden and require round-the-clock care.

“Due to the risk of dementia, often, patients with Parkinson’s might not recognise their caregiver – which could be a spouse, son/daughter, etc. In addition to personality changes and mood-swings, caregivers often suffer from burn-outs, fatigue, and anxiety, which can lead to depression, especially when they cannot share their feelings with anyone else,” he explained. “People also feel guilty if they cannot continue to take care of their loved one with the same strength all the time. Also, judgement from family and society makes it worse, as they don’t support the caregiver as much.”

Dr Ravi pointed out that care-giving was a shared responsibility and that other family members should pitch in for support. “Caregivers must learn to identify their triggers, symptoms of anxiety and depression so that they can also seek support. This is where family members play a significant role,” he opined.

Early diagnosis to prepare better

Emphasising the need for early diagnosis in providing better medical outcomes and planning the care for patients, Dr Shankar Balakrishnan, clinical lead, Department of Intervention Neurology, Rela Hospital, averred that although most people with Parkinson’s first develop the disease around age 60 or older, around 5-10% experience its onset before they hit 50.

Some cases of Parkinson’s disease appear to be hereditary, and a few could be traced to the environment.

The four main symptoms are tremor in hands, arms, legs, jaw, or head, muscle stiffness, where muscle remains contracted for a long time, slowness of movement, and impaired balance and coordination, which sometimes can lead to falls.

“Additionally, caregivers need to be aware of disease progression and how it can impact everyday activities and interactions. This will be helpful, over time, in accepting and coping with the demands of care-giving. Other family members should share the responsibilities so that burden doesn’t entirely fall on one person,” shared Dr Bruno.

Community engagement

Parkinson’s affects men more than women. In India, the social structure lends itself to their wives becoming the caregivers. And, since most of the women have their own health issues like arthritis, diabetes, hypertension and others, the physical toll of care-giving impacts their mental health.

“As it’s the man who had the responsibility of managing finances at home, even small tasks like visiting a bank or withdrawing money becomes difficult for the wife when he has difficulty signing properly or walking. It’s challenging because the disease is progressive and with advancing age, the wife also becomes old,” elaborated Sudha Meiyappan, founder, Parivarthan for Parkinson’s Foundation, Chennai.

She pointed out that since their children were usually working or living abroad at the peak of their career or education, it’s difficult for them to be with parents, or understand the nature of care-giving. In such a situation, social support for the caregiver in the form of a community is crucial.

Parivarthan combines counselling and therapy for caregivers because they need it more than the patient. It also provides assistance for the children of patients through an online platform to educate them on Parkinson’s.

It’s a single platform that offers all kinds of support wherein they learn from each other.