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Submitted by PatientsEngage on 11 November 2020

Samiksha Sivan, integrates her experience at PDMDS to talk about some of the negative emotions felt by caregivers of persons with Parkinsons and the how they can cope with the negative emotions like anger, resentment, guilt and anxiety.

Dealing with a chronic, progressive condition like Parkinson’s disease (PD) can take a significant toll on a person, be it a caregiver or a patient. Being able to cope with everyday tasks at home and work as well as the stresses of caregiving for a Person with Parkinson’s (PwP) is tough and might make you experience a multitude of emotions, all at the same time!

Whether you became a caregiver gradually or whether you suddenly found yourself in the role, being a caregiver brings an experience of emotions like anxiety, guilt, anger, frustration, and sadness to name a few. Sometimes such emotions surface at once, sometimes they surface after a while. Whatever the scenario, it is extremely difficult to address these ‘negative’ feelings. The anger, the overbearing guilt, the grief, the anxiety, everything seems to be overwhelming, heavy and painful to experience. Our instinct, therefore, is to find an easy way out and bury these feelings deep inside us and pretend that they don’t exist. Often, dealing with these emotions make us feel extremely uncomfortable, guilty and judgemental about ourselves.

Caregivers spend an average of more than 24 hours a week assisting their loved ones. While that time can be deeply rewarding, it can also leave you vulnerable -- if you put your own health and well-being at the bottom of your to-do lists. Neglecting your needs can have serious consequences like developing depression and experiencing symptoms of burnout. It is important to understand that caregivers of chronic illnesses are more often than not, prone to depression and burnout. You can read more about preventing caregiver burnout here .

However, avoiding these nagging emotions and burying them is as good as designing a ticking time-bomb. When the time is up, the built up anger, frustration, guilt, and stress explodes out of you, all at once! As you can imagine, this may create a series of other problems which affects you, your PwP and your other family members. Therefore, it is important to understand that even though it is common for caregivers to go through such feelings, it is not okay to leave them unaddressed. Yes, the patient is the one requires care, but it is important to understand that you, as caregivers, require an equal amount of psychological attention.

We have outlined some coping strategies for a few commonly experienced negative emotions as a caregiver. If these are not sufficient, please do not hesitate to reach out to a counsellor/psychologist. They will help you get comfortable with such feelings and work out some tips on the same.

ANGER AND RESENTMENT

Physical and emotional fatigue that comes with managing so many daily tasks often culminates in anger, irritation and frustration over yourself and your care-receiver. You may also be coping with additional emotions like ambiguous grief over gradually losing the person you knew and not feeling in control.

When put in a situation not of our choosing, it’s common to feel negative and resentful. Perhaps you have siblings who are not helping provide care or maybe you are an only child, and became the caregiver by default, and feel you have very little support to offer care. Little things easily become big things when we feel unappreciated and unacknowledged. And feeling like you have to do it all, and do it all by yourself, is a guaranteed way to feel resentment.

Coping Strategies for Anger and Resentment

1. Healthy Expression

Releasing your anger can cause you to feel temporarily relaxed and calmer. Maybe you can try punching/kicking a pillow. Maybe you can say what you want in other room or talk to a trusted friend about how you feel. Maybe you can try some physical exercise like brisk walking, running, high intensity workouts etc. These help in releasing tension and elevating mood. For some people, writing about the situation makes for a great release. Think about what feels right for you. These tips may feel childish to you, but they might work for you and make you feel better. Try to channel your anger into healthy expression. It’s always better out than in!

2. Re-strategise your caregiving

You know your loved one the best. What s/he likes, dislikes, what gets them agitated etc. Most caregivers complain about their PwP being extremely stubborn which causes lot of frustration and anger. Try making a note of the situations they are stubborn about or where they become agitated with you. Once you identify it, re-strategise the way you handled the situation so that you give him/her a small sense of control. For eg: A PwP complains that he doesn’t like to walk with a walking stick and that his daughter always forces him to walk with one whenever they go out. In this situation, the daughter isn’t wrong to ask her father to walk with a stick, but instead of forcing him, what she can do is hold his hand while he walks and carry the stick along with her so that whenever he has issues with walking, he can always use it. Arguing with your loved one is not going to help, but is only going make the situation worse. To make your life easier, you may want to try empathising with your loved one, try to find out how he/she feels, and then accordingly tackle the situation.

At the same time, many of us may not have enough family support while providing care. This is the time when you may want accept any form of help whether it comes from your friends, neighbours, or distant relatives. Many of us don’t accept help even when we are offered it, most probably because we feel no one can take care of our loved one better than us, or its going to be a waste of time and energy to ‘train’ your helper on how to take care of your loved one. This builds up the brimming resentment. Being more accepting of any kind of help and letting go of our perfectionist tendencies will benefit us and our loved one phenomenally, in the sense of emotional and physical health.

GUILT AND ANXIETY

Guilt is an ever-present emotion in all caregivers for a variety of reasons; because of what we haven’t done for our loved one, because we feel that whatever we do is less and we need to do much more, because we realise we are physically and cognitively functioning in ways that is no longer possible for them, because we shout at them out of frustration, because you feel thinking about your life, your expectation, your leisure is wrong when your loved one is in need...A little guilt is helpful because it may make you sensitive and attentive to their condition. However, when the above mentioned reasons come into play frequently, this torments you and saps all your emotional strength.

A related emotion is anxiety, which may stem from loss of control, fear of a loved one's well-being, uncertainty about the future or worrying about healthcare finances can all become extremely overwhelming and can result in anxiety and stress. Sometimes, we experience guilt and anxiety together especially when we decide to take a break from caregiving and are out with our friends, but our mind anxiously keeps going back to the situation at home to our loved one.

Coping Strategies for Guilt and Anxiety

1. There is no such thing as guilt-free caregiving!

The feeling that we should do more for each other as human beings, especially when it comes to blood relations, is a built-in survival mechanism. Yes, you are always going to feel that you could have done more. Sometimes, we experience guilt and harsh self-criticism when we feel anxious or angry about our caregiving duties. Dreading an aspect of caregiving makes us feel like we no longer care for our loved one. It is important to understand that guilt is a part of us. Accepting this concept is very important which will pave the way for your guilt to not take unwanted, unnecessary roads of thought and create a negative spiral. Try maintaining a ‘guilt diary’ which may help with venting out your feelings, or talk to a trusted friend about it, or you can take some time out and practice yoga/meditation which helps in calming the nerves. This helps with reducing feelings of anxiety as well.

2. Be Human, not Super-Human!

Some of us have a tendency to believe that we can provide our loved one with complete relief or even a cure. This sets an unusual and impossible standard for you. Perfection is not the key to caregiving - in fact this causes more anxiety and can lead to burnout and stress; instead maintaining a balance with your life and your responsibility towards your loved one makes for a healthier way of coping. We are children, parents, siblings, spouses and have a myriad of social relationships. Even though we are committing far more time and energy towards one person, we still need to maintain relationships with our other social connections. While you take breaks from your caregiving through these relationships, it can trigger feelings of guilt and anxiety. However, it is important to remind yourself that your emotional and physical health is equally important for taking care of your loved one. The fact is the no one can control everything in their lives, and so doing your best is the best you can do.

And lastly,

BE PROACTIVE

Being proactive means taking action BEFORE it becomes a necessity. Llardo and Rothman (1999) refer to these tips as the “Caregiver’s STOP Sign.”

S = Seek out opportunities for support

For example, a caregiver group can provide both practical guidance and emotional support. Visiting a psychologist/counsellor can be beneficial as you will be seeing a healthcare professional who will help you re-strategise your perceptions, thoughts and feelings and manage your situation better.

T = Take time for the things you enjoy

Although you may not have time for something elaborate, you can find time to do something you like. For example, if you can’t go out for dinner with your friends, see if it is more convenient for you to call them over at home. Try taking out about 2-3 hours once a month or so and do what you like: go for a movie, or for lunch or for a small outing. You can do this by asking some of your family/friends to help out at home.

O = Opt for help whenever you can

Learn to say yes to help that is offered to you and also ask for help when you know that there are supportive people around you.

P = Prioritize your needs

Since you can’t do everything you’d like to do, you need to choose what’s most important to you. If exercise means more to you than meeting a friend for coffee, then forget the coffee, and exercise. Remember prioritising doesn’t mean you don’t care - you are taking a step towards making your life easier and better in the face of adversity.

Samiksha has written this article on the basis of her work experience at the Parkinson’s Disease and Movement Disorder Society (PDMDS). PDMDS provides free counselling services to people with Parkinson’s and their caregivers.

 

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