The Road Together: Prostate Cancer Caregiver Tips

As the loved one of a man with prostate cancer, you may take on many roles in the course of his prostate cancer journey. Family members and close friends often face the stresses associated with caring for a loved one, as well as trying to navigate their own fears and concerns.

Foster Open Communication

Health discussions between you and your loved one can be a minefield, as complicated as fights about finances or asking for directions. For many men used to being strong and feeling in charge, facing medical fears can be overwhelming, especially when it comes to advanced prostate cancer. Be prepared to do a lot of the heavy lifting, such as scheduling the appointments, supporting your loved one during follow-up with physicians’ offices, and implementing physicians’ advice at home.

There are many resources for those who are diagnosed, and you can work with your loved one and their healthcare team to navigate treatment options and support him on his journey. One of the keys is creating an environment built on open and honest conversation. It can be tough, but there are many things you can do to avoid a situation in which worrisome symptoms or situations go unacknowledged.

Caregiver Tips: Navigating Together through Advanced Prostate Cancer

Speak Up When Something Seems Off: As a caregiver, you may be the first to notice when your loved one is not feeling well, even if he is not willing to admit it, or might not even see it – particularly if he is experiencing side effects such as fatigue or dizziness. Pay attention to what is going on with your loved one’s health and do not be afraid to gently ask questions and, if needed, be insistent. Concern for his well-being is not negativity or criticism.
Do Not Get Righteous: Jumping on a soapbox seldom works. Instead of attempting to single-handedly “fix” and “save” your loved one, work together on a health plan that works for you both.
Quietly Flip the Script: If you want to change the way your loved one eats, work with him to make grocery lists that include fresh, healthy foods. Explore recipes for lower-fat, lower-sodium versions of the meals he loves. Try new restaurants that serve healthier options – and don’t hesitate to ask restaurant staff about alternative ways to prepare menu items to make them healthier. Keep water on hand as an alternative to sugar-laden drinks. If he will not go to the doctor, you could ask him to go with you to your family doctor appointment.
Lead by Example: When finding the energy to care for loved ones, you may find that it takes a toll on your ability to nurture your own health and well-being. It is important to make time to keep yourself healthy and strong as well. Show him how to lead a healthy lifestyle by leading one yourself.

You're there to support your loved one when he needs it. When the going gets rough, and it may, you have to keep going because you love him.

Your relationship with your loved one will be stronger if you work as a team and open up to each other.

Help Facilitate Productive Visits

It’s helpful for your loved one to get as much information as possible from his healthcare team during his appointments. The following questions can be helpful in guiding conversations with his healthcare team.

Understanding Prostate Cancer

What type of prostate cancer does he have?
What is prostate-specific antigen (PSA) and what does it mean?
What is a Gleason score and what does it mean?
What is androgen, and what role does it play in prostate cancer?
What are the main sources of androgen in the body?
Can you help us find disease and therapy information on the Internet from a reliable source?
What happens when hormone therapy stops working?
What does it mean if his PSA levels are rising?
How will I know if my PSA levels are too high or rising too quickly?
Am I checking my PSA levels often enough?
What can I do to increase the time I have before the cancer spreads?
Is there a treatment that can delay the spread of my cancer?

What You Can Expect

Can he still work while he is being treated?
Where should we go for help with our insurance questions?
What if we have trouble paying for treatment?
Who is our primary healthcare contact?
Who will be on the healthcare team and how do we contact them?

Treatment Options

How long will treatment last?
What treatment options are available for him? What are the risks and benefits of each?
Have you treated many patients with cancer like his?
Which treatment do you recommend? How does the treatment work?
What are the chances that his treatment will work?
How will you know the treatment is working?
What are his options if the treatment doesn’t work?
Should we get a second opinion? Is there someone else we should speak with?
Are there any available treatments that have been shown to stop or delay the spread of his cancer?

Impact of Treatment(s)

How will the treatment affect his daily life?
How will the treatment make him feel when he wakes up in the morning and then during the day as he goes about his usual activities?
Will he still be able to be active and do physical activities?

Encourage Health and Wellness

Work with your loved one’s healthcare team to ensure all appropriate measures are taken to maintain his overall physical and emotional health while in treatment or palliative care.

Adequate nutrition and physical activity can play an important role in helping patients to continue working or volunteering, as well as maintaining recreational and social activities:

Give Reminders: Reminding your family member or friend to eat and stay hydrated may help him regain strength and stamina.
Exercise together: Participating in your friend’s or loved one’s exercise regimen may help motivate him. Consider activities you can do with family or friends that are fun and healthy – these can also be great ways to build memories.
Take Note: A change in your loved one’s symptoms or energy level could be a reason to contact his healthcare team about his nutrition and exercise regimen.
Take Care: Taking care of your own mood and mental health can play an essential role in making sure you can be there to support your family member or friend. There are many support groups and medical societies that may be helpful to you.

Sexual intimacy is another difficult topic to broach, but there are steps you can take to support him there as well:

Be Engaged: Participating in conversations about sex and intimacy with your partner and his healthcare team, and considering individual counseling may help you deal with issues related to sex and intimacy.
Show Compassion: Whether or not sex is a critical part of your relationship, research has shown a man’s sense of masculinity is often tied to his sexual capability.
Express Yourself: While your primary concern is likely to be for your partner, you have a right to all of your thoughts and feelings. Expressing these concerns may actually lead you to take steps that will help both of you achieve intimacy.

Provide Emotional Support

Dealing with emotions is an essential part of this difficult experience, and it’s not one size fits all. By nature, people may have different styles of communication. However, many others have been through this, and there are resources such as:

American Cancer Society’s Cancer Survivors Network, which has ways for caregivers to connect with other caregivers.
CancerCare’s Educational Workshops, which provide up-to-date information about cancer-related issues and offer practical tips on how to cope with a loved one’s cancer.
National Cancer Institute’s Caring for the Caregiver Booklet, which provides ways for caregivers to take care of themselves while caring for someone with cancer.

Some men feel that showing their emotions is a sign of weakness, where women can be more open to sharing feelings. These differences can cause anger, anxiety, and even result in physical symptoms.

Emotions can also make decision making more difficult. Your loved one needs to know that these feelings are normal and that he is not alone. Listening is now more important than ever. He may not like to talk about his disease, treatments or fears. Depending on your loved one, it might be best if you don’t push him to talk. Instead, let him know that you will be there when he needs you – when he is ready.

You might speak with your loved one about seeing a psychologist or psychiatrist for one-on-one sessions. Joining a prostate cancer support group can be another option for those seeking emotional support. Some men may feel more comfortable talking with men who are going through a similar experience. There are in-person support groups and others that can be found online.

Remember that your loved one may sometimes want to talk to his doctor alone so he can address his questions and fears without upsetting you, or for his own reasons. You are still an important part of his prostate cancer journey. You can also request to speak with members of his healthcare team; they may not be able to reveal confidential health information, but you can share your observations or concerns.

The Road Together