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Submitted by PDMDS on 6 April 2019
Major Fonseca in a white tshirt and black and grey striped sweater and Mrs Fonseca in a purple and white top

While Parkinson's Disease affects the person who has been affected by the condition, it also changes the role of the spouse who suddenly has to take on the role of a caregiver and support the patient in terms of their daily routine and activities. Mrs. Fonseca shares her experience. 

Diagnosed in 2014, Major Fonseca has been a member of the Parkinson’s Disease and Movement Disorder Society support group for a year now. He has an easy, commanding presence – his time in the army apparent in his strong posture – Parkinson’s hasn’t taken that away from him. Mrs. Fonseca is the smiling presence and support to him. They have been married for 52 yrs now.

Mrs Fonseca, who always accompanies her husband says, “Everyone keeps mistaking me for a patient! I’m here just as a caregiver.”

However, no one is ever just a caregiver. People tend to overlook the role of caregivers – even though Parkinson’s is just as much a part of their life as it is the patient’s.

Parkinson’s Disease is a neurological i.e. brain related condition, that mainly affects movement. It is a slowly progressing disease. PwP (Persons with Parkinsons) may experience movement related problems (known as motor symptoms), such as tremors, slow & effortful movements, stiffness of the hands and legs, poor balance and falls and difficulties with walking. Additionally, other problems, which are not related to movement (known as non-motor symptoms), may also be experienced, like memory difficulties, slowed thinking, confusion, feelings of depression and anxiety, sleep disturbances, fatigue etc. 

Mrs Fonseca on her experience as a spouse of a person with Parkinson’s

"The disease started with tremors in 2014.  When there were only tremors, I was worried but not so much as I thought that when our parents and grandparents were old, their hands would also shiver or shake. When he was diagnosed, both of us didn’t react much as at that time you are really not aware of what is going to happen later on. We didn't know about Parkinson’s then. But now there is more acceptance and lot of people know that it can be slowed down but it can’t be cured. It is important to take the medication regularly.

Initially, as a spouse dealing with this was difficult. Throughout our lives, he has always been the person in charge. He takes all decisions. I didn’t do much. From the very beginning, I was always protected. So my personality also moulded as per the situation. And then this suddenly came about and it hit me initially but now after a year or two, I am getting used to it. 

As a caregiver I have to be very attentive and also giving. When the patient is not on medication, he is a bit slow and you have to really be attentive during these off periods. I make it a point to keep him occupied, talk to him and not worry him. Though I am a worrier, I always try to be very careful around him because he can always pick up my moods. Then he will get more worried.  I worry about everything. I know I have to be strong but there are many times that I am worried what it would be like tomorrow.”

The Importance Of A Routine

To deal with the disease, Mrs Fonseca has set a routine for all activities in the house. “I am very particular about the timings for his food and medication. I see that he exercises daily and goes for his daily walk. I think remembering what time to administer different medication is one of the more tricky aspects of this. The medicines are time-sensitive.” Mrs. Fonseca shares, revealing the logistical difficulties a caregiver faces. “I have special timings for relatives and friends to come over and talk to him because in the morning, due to medication, he is a little drowsy and then housework and the maid come in. In the evening from 6 to 7 we have physiotherapy and exercises. Exercises one learns in support group are also done.”

Major Fonseca is not totally dependent. He is able to do many daily tasks on his own though he needs help in some of them. “I am in the house so I look after both of us and it’s not that he is totally dependent. So far he is not that bad and he is able to walk. He does not have freezing but he has become slow. Because of his tremors, he can’t serve himself from the dish so I serve him but he eats on his own. Other things he does on his own like dressing but due to the disease, he has become slow. I have the time on my hand so I don’t hurry anything with him. I am patient.”

Balancing the need for independence

She stresses that there should be a personal touch in caring for the patient. “Don’t help him too much. Let him do things on his own but supervise. If you feel he is struggling too much or getting frustrated, then you help.” 

Like any couple, Mrs Fonseca too is dependent on him. “We are the only ones in the house so I am always with him. When we go out, we go together. It’s very rare that I have to go out alone.  He was the one who was the thinker and today also if I have to do something, I will ask him first. There should be a good coordination between the caregiver and the patient.”

Keeping the person with Parkinson's engaged

Her advice to other caregivers is, “I have to help the person with Parkinson’s keep busy with one thing or the other. If they are not busy, they tend to slow down. You make them read the newspaper, watch some T.V. Their attention span may be low and thought process affected. Gradually it decreases and comes down from 30 min to 20 min and so on. So don’t force them. Let them do whatever they want to do. Sometimes they get tired but still you force the person. Don’t do that. Go according to their time. Let them follow their own routine at their own pace.”

“He is not young. He is going to be 81 yrs. In earlier days, he belonged to a lot of committees. He used to go to schools to give talk about the army. He is currently in the committee of Bombay Institute for deaf and mute in Mazgon. They have requested him to continue. They come and pick him up. I also accompany him for some of his meetings.” 

Mr and Mrs Fonseca both realize how important it is for patients to keep up their hobbies. She proudly reveals “ He is very busy throughout the day. He has his stamp collection that he is doing since the age of 9 yrs. He has got a lot of stamps and coins. Its one of his hobbies. 

Need for awareness and support groups

It is clear that spreading awareness is a cause close to the Major’s and Mrs Fonseca’s heart. “it’s important to let people know about Parkinson’s. So many people are affected by it, but no one really knows much about it. And when they don’t know, they don’t deal with it well. They retreat into themselves.”

Revealing the role PDMDS support group has played in dealing with the condition she says that “Coming here makes Parkinson’s about more than just having medicines. The physical therapy, meeting people is very good.”

On a parting note, she advises that every day is different and to take one day at a time. 
 

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