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Young adult caregiving: The parent perspective

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AYAcaregiver.JPGBy Johanna Pule, Department of Social Work

The National Association of Caregivers describes the typical caregiver as a 49-year-old female caring for her widowed 69-year-old mother, who lives outside of the home.

For those of you caring for a young adult patient (any patient ages 15-40), you do not look like the "typical" caregiver described. The patient is not a widowed 69-year-old mother, but rather could be a 19-year-old leaving home for the first time, a 30-year-old with two small children or a 24-year-old just starting his career. And you could very well be the patient's mother, spouse, partner, cousin, aunt or grandparent.

Adolescent and young adult (AYA) patients have their own unique set of challenges and the same can be said for you as the caregiver. This post begins a series that will focus on the caregiving role of the parents of young adult patients and the caregiving role of the partners/spouses of young adult patients.

Changing roles: Being the parent of a cancer patient

When your son or daughter receives a cancer diagnosis, your role as the parent can change. You shift from encouraging independence to, at times, taking care of her or her every need as you did when they were younger.

Respect and communication. One of the most important things for parents to remember while caring for their AYA patient is to keep lines of communication open. Allow patients the freedom to talk about their feelings when they are ready.

Give the young adult you're caring for reassurance that you're available to listen if needed and will honor his right to make his own decisions regarding communication.

Sometimes, the patient may not know what he's feeling and will need time. He needs you to be present and supportive when he decides it's time to talk.

Communication with the medical team regarding what the patient is and isn't capable of doing is an important conversation. Encourage your young adult to participate in this discussion and verbalize her needs to the team. Help her understand that she has a voice and it needs to be used.

Knowing their limits and capabilities helps AYA patients understand where your presence as the caregiver is essential, where it's optional and where they can enjoy their independence.

Privacy and self-determination. While there might be a tendency to return to the parental role of being the primary decision maker for your child, remember, before his diagnosis, the patient was probably living a life in which he was completely capable of and responsible for making his own decisions. Offer guidance and wisdom as appropriate, but be mindful of the patient's need for independence, and that she has the right to make her own health care decisions.

After starting treatment, AYA patients may lose a significant amount of privacy. Respecting young adult patients' space during hospital admissions, as well as in their day-to-day lives, can really have a positive impact on their quality of life.

Find a balance. This can often be one of the most difficult tasks as the parent of a young adult cancer patient. Striking a balance between providing appropriate patient care and respecting the patient's rights as an adult can be a frustrating experience for both the patient and caregiver. However, through communication and respect, finding this balance can be a realistic and rewarding goal throughout the course of his her disease.

Organizations like Planet Cancer (www.planetcancer.org) and MD Anderson's own Cancer180 (www.cancer180.org), while patient focused, can also offer insights to parents to learn about issues their young adult may be facing without having to pry into the patient's private life. The more you know about the issues faced by this population, the better able you are to provide what they need.

For more information about coping as the parent of a young adult patient, contact the Department of Social Work online (www.mdanderson.org) or at 713-792-6195.

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