Challenges you may face

ChallengesAnger and StubbornnessLow MoodImpulsive BehaviourHallucinations and DelusionsStrained Relations

Due to Parkinson’s and its symptoms, PWPs may experience certain emotional and behavioral disturbances that can be difficult to manage. The following section is aimed at explaining these emotional and behavioral disturbances along with management strategies.

Read Mr. Himanshu Tyagi’s experience on care giving for Parkinson’s

“My mother is a Parkinson’s disease patient diagnosed in 2001. We suspect the condition impacted her life from much before. We as a family have gone through various stages of Parkinson’s. My mother has fought the battle so far and continues to fight.

She had her Deep Brain Stimulation at AIIMS last month and is coping well. We as caregivers have gone through our own cycle of emotions which at best have been mixed- fear, guilt, anger have been a part of our lives but also at the same time- cooperation, understanding, empathy have been cultivated. Though wish we rather did not have to cope with an illness like this.

Recently while I was at AIIMS for the mother’s reprogramming- we met this young family- the man, thirty three years old, who was badly afflicted with early onset of Parkinson’s.

The wife about 30 years was distraught and at a loss as to how to deal with her life. They had come with the wife’s brother as the man’s family had stopped taking much interest in his treatment. They were from Sitamarhi in Bihar. I spoke to them. Like it happens initially, the fear, anger, hopelessness and guilt gets transferred on to the patient. The same was happening to them-‘he took too much stress’, ‘he was always suspicious and anxious’ etc.

I understood it because for a long time I did not have any way of coping with what happened to my mother, I did not understand her behavior and even now sometimes I get upset and then I have to consciously tell myself – it is not her, it is the disease. Why I write this is that after meeting this family, I decided to provide information via YouTube in Hindi- not on the technical aspects of Parkinson’s but the story of our family coping with the illness. You could go through the video to know how we coped up with Parkinson’s.

PWPs may feel angry due to the symptoms of Parkinson’s as well as a sense of dependency that it might generate.

Take for example the difficulty in doing activities that were previously done with ease such as walking, cooking, bathing, and talking etc can bring about a lot of frustration in the person with Parkinson. As a result of these difficulties, they may feel extremely angry and give up hope of improving their condition. They may therefore appear to be stubborn; showing an unwillingness to do things that are beneficial for them such as exercise, walking, consuming medicines etc.

As a caregiver, you always have their best interest in mind and your intention is to get them to do these activities but the manner in which this is communicated is important. For example, forcing them to do so will not work. Instead, try understanding the reasons behind their unwillingness to participate in such activities. Discuss these reasons openly and sensitively with them and try generating inspiration and hope.

Some PWPs may have been extremely independent individuals prior to the diagnosis. They were perhaps the type of people who’d never ask anyone for help in any matter big or small, would always be on their toes completing one work after another, one errand after another. To let go of this sense of independence, even to a small degree and to rely on others for simple activities of daily living can elicit a strong sense of anger and remorse in the patient.

It is therefore important for you to clearly communicate with them and let them know how they are not a liability on you.

As caregivers, it is difficult to deal with that anger but try seeing beneath the anger and understand what is provoking it.

People with Parkinson’s tend to experience feelings of sadness, lack interest in activities that used to be very enjoyable for them, focus only on the negative aspects of life, show reduced interest in talking or meeting people and a sense that life is no longer worth living. This can be a result of Parkinson’s and the challenges it brings or it could be a symptom of the disease. If this emotional state continues for 2 weeks or more it is important to inform your doctor.

However, as a caregiver, you, your friends and family can encourage your loved one to maintain a regular sleep cycle, a good diet and exercise routine as this has been scientifically proven to improve mood. Additionally, you can help them explore the negative content of their thoughts and how that in turn affects their behavior and mood.

For example, a negative thought common in most PwPs can be “I am no longer in control of my health because Parkinson’s now has complete control over me.” Make them realize that this thought is negative and not entirely true. Exercise, medications, support groups can drastically improve the condition and slow the progression thereby giving one more control in the management of his/her Parkinson’s.

Attending Support Groups can be helpful as your loved one may prefer talking to others who are facing similar problems.

It is important to realize, that as a caregiver you have limitations as well and it may not always be possible to cheer up your loved one. Talking to a professional counselor can be of help.

Impulsive behaviors refer to recurrent behaviors that are uncontrollable, interfere in daily living and the person experiencing it finds him/herself unable to reduce it or stop it despite being aware of its harmful consequences.

Common examples of these behaviors are gambling, shopping (purchasing a lot more than what one needs or can afford), binge eating(eating extremely large quantities of food; more than what is required or eating even when not hungry), punding (repetitive behavior such as emptying a dresser drawer, then replacing all the items, and emptying it again etc), hyper sexuality (strong and disturbing sexual thoughts, urges, increase in demand for sexual activity, engaging in pornography or inappropriate sexual behavior).

Impulsive behaviors are experienced by some, not all PwPs and they usually result from the side effect of Parkinson’s medications.

In many cases, PwPs might be unaware that they are engaging in such behaviors’, therefore family members have to take note of it and bring it to the notice of the doctors. These behaviors’ can be controlled and treated therefore it is important to inform your doctor about it.

People with PD may see, hear or smell things that are not present in that moment in time and place. For example they may see a stranger in their room; they may hear the roaring of a wild animal etc. These are known as Hallucinations.

Delusions on the other hand are beliefs that are false and have no evidence. For example, they may believe that others are against them, are trying to attack or poison them, etc. These beliefs may be very strong and cause a lot of distress for patients and caregivers.

Hallucinations and delusions can both be very scary as one experiences things that are not really present or true. However, it is important to recognize that this is a common symptom of Parkinson’s or a side effect of medications and needs to be bought under the attention of your doctor.

When your loved one is experiencing hallucinations and delusions, do not argue, laugh or dismiss it. Do not try to convince them that what they are thinking is completely wrong nor should you agree with them as this might strengthen these beliefs. Instead speak in a calm, reassuring voice to make them feel that they are safe. Use sentences such as ‘I am with you.’ “You are not alone’. “I understand that this must be very frightening’.

When they are calm, try to reason with them. For example, ask them whether it is really possible to have an animal in the room? Is it really possible to have a horrible strange man in the house when family members are present?

For the purpose of safety, keep sharp objects away from them, avoid complete darkness, keep the environment calm and peaceful and distract the person with another activity.

In the case of delusion, for example, if they believe someone from family or friends is trying to harm them, as upsetting as this might be, realize that this is due to Parkinson’s and therefore, do not take it personally. Speak to them in a calm manner and ask them what makes them think that way? Gently question them whether their assumption (delusion) is based on fact or feeling? And help them realize that such thoughts occur as a result of Parkinson’s medication.

It would be helpful to request your neurologist or a psychologist to explain this to your loved one as this would bring in more objectivity.

Hallucinations and delusions need to be bought to the attention of your Neurologist who may change the medicines or the dose of the medicines.

The challenges that come along with Parkinson’s, may affect the relation you share with your loved one, whether you are the patient’s spouse, child or friend. The following is a brief discussion on the possible difficulties that may stem and ways to address them.

Spouse

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Every couple experiences problems in their marriage at some point in time, irrespective of having a medical condition or not. The problems you may be facing in your marriage may not be linked to Parkinson’s at all. That being said, there are instances in which the strains in the marriage are due to PD.

The diagnosis of Parkinson’s brings with it certain challenges in the relationship. Following the illness of your loved one, you may feel that your roles have changed; you now have to assume more responsibilities than you wanted to or you thought you’d ever have to, e.g. managing finances, household duties, children’s school/college demands etc. You may feel that you have to give up on certain things or activities you used to enjoy as a couple. On some days, Parkinson’s may supersede spontaneity. You may realize that every communication revolves only around Parkinson’s and not other topics of interest or enjoyment.

Due to the symptoms of Parkinson’s, your spouse might feel conscious of his/her appearance and image. He/she may begin to feel overly dependent on you which might frustrate him/her.

These issues, if left unaddressed can create problems in the quality of your marriage.

To experience these difficulties is natural and to an extent; inevitable. But how you and your partner address and cope with these difficulties is what finally matters. Do not let Parkinson’s dominate your identity as a married couple. You can still enjoy a number of activities together which might just need a little modification to make them simpler. Explore new things that both of you enjoy. Set aside some couple time for you and your partner. Express your feelings, your thoughts, and your concerns with each other in a sensitive non blaming manner. Talk to each other and listen to each other. It is only in the face of challenges, in which relationships become stronger. Be each other’s source of strength. Most importantly, take good care of yourselves, because in doing so, you will actually be helping each other.

Children

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To see your parent experience the symptoms of Parkinson’s, can be very distressing and hurtful. Due to these extreme feelings, some might try to do anything and everything for their parent while some might block these feelings and develop a sense of detachment.

However, the key lies in moderation.

Your parent needs you, your support and perhaps your help. Try to be there for him/her. Apart from helping with the requirements of Parkinson’s, try to focus on the little things, the small gestures that would make him/her happy.

But realize that you also need to pay attention to yourself, to your ambitions and to your responsibilities. Therefore do what you can. This will allow you to focus your energy on your parent as well as on your own aims and most importantly your parent won’t feel that he/she is becoming a liability on you.

Grand Children
Young children in the house might get very disturbed seeing the symptoms of Parkinson’s in their parents or grandparents. Instead of keeping them in the dark and allowing more confusion to rise, its best to explain to them in very simple terms what Parkinson’s is and what behavioral manifestations it entails (tremors, slowness in movement, etc). Of utmost importance is to inform them that Parkinson’s is not life threatening and that you may need their help in certain tasks and activities.

As a family unit, you may feel under the scanner by people who stare at your loved one but bear in mind that generally people stare out of curiosity and unawareness rather than rudeness. Therefore help others to better understand Parkinson’s and create more awareness about it. This way, they will be more empathic and sensitive around you and other people with the illness.

For further queries please feel free to contact us at pdmds.india@gmail.com or our confidential helpline number 022-24977477