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Patient & Caregiver Support Services and Resources – Part II

When to Seek Out Support

Not too long ago, a story circulated on the national news about an elderly cancer patient who, upon being discharged from the hospital and rehabilitation, called 911 because he had no food in his home and no way to go grocery shopping. The empathetic operator took action, purchasing groceries and then delivering them in person to the grateful patient. The story was heartwarming on several levels, but it also drives an important message: There are people who are willing to help — all you have to do is ask.

You May Feel Alone, But You Aren’t

It is completely normal for both cancer patients and their caregivers to experience feelings of isolation, particularly when the diagnosis is new and the reality of the condition and its repercussions first start to sink in. It is essential to remember that though you are the most directly involved and affected, you are by no means alone. In addition to friends and family members who may want to help, there are many resources available that you may not be aware of. There are a remarkable number of volunteer organizations that are supported by survivors and family members of previous patients who want to pay forward the help that they received themselves, as well as community groups and health advocates who can prove to be invaluable.  In addition to your own circle, you can generally find help by asking your healthcare provider or contacting your local religious organization.

Organizations That Offer Patient and Caregiver Support Services:

You can also do a Google search specific to your location and type of cancer.


How to Ask for Help As A Patient Or Caregiver

One of the most difficult hurdles that a cancer patient faces is the act of asking for help. There is a natural tendency to dislike thinking of ourselves as in need, and that often stands in the way of both getting what we want and allowing others to feel useful. You are not a burden when you ask for assistance, but if you are feeling hesitant then it is a good idea to start with small things until you feel comfortable. Examples of things that are not hard to ask of your friends, family or volunteers from the community, and that they would be happy to help with include:

Helpful Ways Patient & Caregivers Can Get Support From Others:

  • Picking up items from the grocery store when they are already there
  • Driving you to the doctor’s office
  • Taking your children to their sporting events or out to the movies
  • Walking or feeding your pet or watering the plants or garden
  • Cooking a meal

These are all items that are easy for people to do and they will be glad to be of service. Think about it – wouldn’t you be happy to do these things for others?


Managing Those Who Are Helping

One of the reasons that people often hesitate about asking for help when they are facing an advanced stage diagnosis is that they don’t want too many people involved in what is an intensely personal, and at many times difficult experience. Asking for help in the earliest stages of your diagnosis is a good idea for a number of reasons, as it gives people time to arrange their schedules and make plans, but also allows you to set ground rules for yourself and them when you are at your strongest. Many well-wishers make comments that are well meaning but painful or intrusive, and the better you are feeling the first time that you receive these types of comments, the better you will be able to handle them in the future.  The best way to manage personal questions or thoughtless comments is to take one of three approaches:

  • Ignore them – the person will get the message
  • Answer in a way that provides no real answer, or redirects the topic
  • Be honest and tell them that their question was hurtful. There is nothing wrong with you getting angry or feeling emotional pain when somebody else is behaving in a tone-deaf way.

In terms of what information you want to share with those who are providing you with assistance, that is entirely up to you – all you need to do is establish rules for yourself. You may want to keep medical or personal information to yourself or make a decision about who is privy to what is going on. Be willing to be honest about your feelings to those that you feel are truly interested – opening up can be very freeing. Finally, understand that there are people who truly care who may not be comfortable in your presence. Not everybody knows how to handle illness, and if somebody that you care about is not as present as you had hoped, be understanding of the fact that your condition may be causing them tremendous pain. Reach out to them and let them know that they are missed.

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