Sail through the storm

How to be the mast of support if you’re a caregiving spouse—without drowning yourself

Couple together at sunsetRahul and Aparna had been married for seven years. Before the proverbial itch could affect them, Aparna met with an accident that left her bound to a wheelchair for life. Rahul was emotionally crushed. But he had no time to nurse his wounds; he was now a care-giving spouse.

Any prolonged illness, whether terminal or not, has a deep impact on the family, especially on the spouse. The spotlight often falls on the care receiver for being the heroic warrior battling it out, while the spouse’s supporting act goes unappreciated. To deal with this sudden role reversal in your relationship, it helps to:

Accept the illness

After the roller coaster of emotions ranging from shock, denial, anger, frustration, sadness and even guilt, it is possible to emerge with feelings of acceptance and calmness. As difficult as it may seem, you must work towards reaching that state. Share what’s on your mind with someone—a friend or a professional—who will not judge you or the situation. Let the tears flow and wash away the burden of any guilt. Your spouse is also likely to have similar feelings. Talk to each other, discuss and share the pain. Resolving feelings of guilt is one way to be able to look at the illness as another challenge you both face as a couple.

Define your role

Any kind of prolonged illness results in a significant change in the roles of both partners. From being a part provider for your home, you may now have to be the sole provider. Discuss the new allocation of duties, considering the needs of your spouse who may now have physical limitations and lifestyle restrictions. Chalk out the new roles based on what both of you can contribute, and come to a clear understanding and acceptance of the change in roles.

Reach a new balance

Research shows that family dynamics take a drastic turn at the onset of a prolonged illness. The equilibrium you had reached as a couple gets disturbed. As much as you may want to keep things ‘normal’ or ‘as before’, it may not work. You may need to spend time and effort to find out what will work now. Allow yourselves time to settle down into your current roles and be prepared for initial hiccups.

Encourage independency

While it is natural to feel protective about your ill spouse and it may satisfy his/her need for emotional support as well, it is crucial to be watchful for signs of over-involvement. Do you oversee everything your spouse does? Do you feel irritated if something is done without your consent? Does your spouse feel that even though out of concern, you unnecessarily restrict his/her daily chores and responsibilities? Revise how much you want to be involved in his/her daily care. Your spouse also needs space and time to adapt to the illness just as much as you need some time to yourself.

Communicate

When times are stressful, communicating your feelings to your spouse becomes even more crucial. But keep yourself open to communication as well, as your spouse may be experiencing a whole range of emotions and, depending on the nature of the illness, may be feeling a loss of meaning in life. Let him/her convey their emotional journey in words, either by speaking or by writing. When expressing yourself, ensure that you don’t come across as accusatory.

Take care of the children

Research shows that children become emotionally vulnerable in times like these and need more care and attention. While the major responsibility of bringing up the children may shift on to you, allow your spouse to share in the process as much as s/he can. Review your strategies for assuring and disciplining your child. Now more than ever, your child needs to feel secure about the future. You may experience feelings of inadequacy as a parent. Seek help in resolving them, as they undermine your child’s emotional growth.

Embrace spirituality

Many have suggested that the belief in a supreme power may be an innate need in all of us. Your spiritual growth during the challenging times will help you come to terms with the grief. Connect with others who offer this wisdom to guide you through this journey.

Keep the family connected

You don’t have to organise a family get-together. Simply follow routine rituals, like praying or having meals together. Explain to your children how doing so helps keep the family connected through tough times.

Express negative emotions

For prolonged mental illnesses, like bi-polar disorder or schizophrenia, it is extremely important to watch out for emotions such as hostility, over-criticism, over-involvement and lack of warmth. Discuss with a professional if you feel overburdened and find yourself displaying any of the above. Negative emotions can lead to a relapse of the illness, and need to be dealt with by the caregivers themselves.

Spend some me-time

You need not feel guilty about spending some time with yourself. Nurture yourself, eat well, and unwind by indulging in your hobbies. Neglecting yourself will burn you out, besides making you unfit to take care of your family.

While you can’t stop the sun from setting, you can learn to look at the brighter side of your relationship till the light shines.

This was first published in the September 2012 issue of Complete Wellbeing.

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Sukanya Ray
Sukanya Ray is a consultant at Human Dynamic Asia Pacific, Bangalore, providing people management services. She is a clinical psychologist trained from the National Institute of Mental Health And Neuro Sciences [NIMHANS], Bangalore.

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