Medicine estimates that one in every 100 people over 60 suffer from Parkinson’s disease. Known for tremors, the neurodegenerative condition, which is chronic, progressive and incurable, also causes motor slowness, stiffness between joints and imbalance – something that retired Maria Lygia Kopke has suffered for 20 years.
For the family, and for the patient himself, seeing the daily progression of the disease is not easy. But that was not an impediment to retired electrician Joaquim Relvas, who has been Maria’s partner for almost 50 years. “I make a point of taking care of my wife. I don’t see it as an obligation,” he says. With a lot of love, he had to reinvent his routine and learn to take care of the one who always took care of him. “I’m not ashamed at all,” he says.
“I’m not happy to see her like this, but I have hope. She’s the last one to die, right?”, says Joaquim Relvas about his wife, Maria Lygia. Retired since 2015, today he spends his afternoons taking care of her, diagnosed 20 years ago with Parkinson’s disease. “I had to roll up my sleeves and do something I had never done in my life. But I learned, mirroring myself in the professional caregiver”, he says.
Until 2021, Maria lived with difficulties, although within a flexible routine. “We used to ride our bicycles, or stroll along the streets nearby”, recalls Relvas. However, everything changed due to a urinary tract infection and dehydration detected in December of that year.
From then on, Maria was bedridden and needed full-time help. In the morning, a caregiver provides assistance, and after noon, the husband takes over the role. This is in addition to the physiotherapists, speech therapists and acupuncturists who make frequent visits.
The hardest part is right after dosing the medicine, which makes Maria make involuntary movements or lock her mouth, which creates excess saliva “The scene can be difficult, but I know that half an hour later the medicine wears off “, account.
Organization is essential to take control of care, but escape from the world of care is also of paramount importance for Seu Joaquim.
“In the morning, I enjoy my hobbies: riding my old cars and collecting coins. It’s my escape valve, because it’s a very strong pressure to see her there, not being able to go out, not being able to answer when she asks me: ‘when am I going to leave out of bed?’. My heart hurts a lot”, she vents.
But after dealing with his pain, Relvas does everything to take Maria’s away. “We have good relationships, we talk, watch movies, laugh. Nowadays, with a cell phone, you can even travel to other countries on YouTube”, he says, who likes to watch videos of places he visited with his wife. “As for those others that I haven’t been to yet, I show her and joke: ‘Oh, you have to get better soon so we can go there’.”
The motto ‘one for the other’ was always present at Joaquim and Maria’s wedding. “In a way, because of my profession, she was the one who held the bar here at home, with our three children. So I’ve always been a partner, the two have to be a team together. And it’s always been like that, since the beginning”, account.
The couple met through mutual friends and in 1977 they got married. “I love her a lot thanks to the interaction we always had, the affection, that of always wanting the other’s good will. There’s only one secret: liking the person, in happiness and in sadness”, he says.
When young, Joaquim and Maria like to go camping together. Often this was not only the purpose of the trip, but its stops. “Once we drove to Bahia from São Paulo and we stopped to camp in each city”, he says.
If before the days were filled with peace and tranquility, today worry takes over the routine. “I feel saddened by her situation. But I always research the disease and put my faith in some new things that are appearing. I find it quite difficult to get better, but we always have hope”, says Joaquim.
In everyday life, it is precisely this feeling that keeps orders. “Earlier today, for example, I went out to pay some bills and when I came back, I saw her looking at me. When I approached, she smiled and said: ‘I’m glad you’re back’. But she knows that I’ll always come back”, he says, excited.
Parkinson’s disease results from a severe decrease in the production of dopamine, a neurotransmitter that helps transmit messages between nerve cells. “Dopamine helps in carrying out the body’s voluntary movements automatically. In the absence of it, the patient’s motor control is lost”, explains Marcelo Valadares, a functional neurosurgeon at the Hospital Israelita Albert Einstein (SP) and chief physician of the Functional Neurosurgery area of the Discipline of Neurosurgery at State University of Campinas (Unicamp).
With the advancement of the disease, it is possible that the patient has a worsening of the condition and needs continuous monitoring. But when that caregiver is part of the family, as is the case with Joaquim Relvas, it is necessary to think about the mental health of this family member.
“It’s an exercise in patience, resilience, development of emotional intelligence and, often, affection”, says Valadares. “It’s a big mistake to think that the caregiver doesn’t get sick, even more so when there are strong emotional ties with the patient.”
The neurosurgeon points out that there are several issues involved. “There is the suffering of seeing the loved one limited, there is the economic issue, because otherwise you will have someone who will often have to devote almost a full time to the other. There is also the physical issue, because the patient needs a space for care; the routine also needs to be reorganized. It is a huge number of problems”, he says.
Thus, having a support network is essential to avoid physical and mental overload, as well as “escapes”, like Seu Joaquim’s old cars. “It is necessary to understand that this person needs someone to replace him in shifts, visits to the doctor and division of domestic and administrative tasks”, he says.
Marcelo Valadares, who is also Maria Lygia’s doctor, admires the patient. “Dona Maria Lygia already has an advanced and serious condition, but she has good preservation: the ability to talk most of the time. Of course she has a very big physical limitation, but seeing a person with that physical condition in a good mood makes you to rethink a lot of things in our life”, he comments.
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