Making caregiver decisions

When someone you love has cancer, your life changes too.

You may think of being a caregiver as a natural progression of your commitment to a loved one with cancer, but it’s actually its own job — with its own set of rewards, anxieties, and time-consuming tasks.

Taking inventory

The transition to becoming a caregiver is different in every situation. Sometimes it happens quickly, in the case of a major surgery or sudden infection, and sometimes bit-by-bit, with certain cancers that move more slowly. Either way, there’s usually not much of a chance to stop and think about the changes taking place.

But even with everything that needs to be done, it’s important to take time to make sure you are ready for all of the roles caregiving might entail. You need to assess your limits before you start, or you may find yourself in over your head. What kinds of care will your loved one need — emotionally and physically?

You may want to be involved in your family member’s care, but feel you don’t yet have the skills required. For example, if your loved one needs help transferring to and from a wheelchair, learning the proper method of providing assistance can prevent injury for you both. You can contact your local chapter of the Red Cross for information about caretaker courses in your area.

In some cases, you may have to make changes in your home. Little things like throw rugs can be extremely hazardous to someone who has difficulty walking. And tools like shower chairs or handrails can make tasks like bathing much easier to manage. Also, you may need to plan for special equipment like an IV for intravenous medication or nutrition, or an oxygen pump.

Finding help

Sometimes, the person in your care needs more support than you are able to give — and it’s important that both of you are comfortable with the decision to arrange for assistance. As part of the discussion, you may have to explain why you feel it’s the only alternative even if both of you would prefer that it wasn’t the case.

You may be able to find help with a homecare organization in your community. Depending on your needs, different kinds of homecare providers can help:

Registered Nurses take care of medical needs like monitoring equipment and caring for wounds, while helping you learn homecare skills as well.
Homecare Aides assist with personal activities like bathing and dressing, as well as transportation.
Companions or Homemakers help out with everyday chores like cooking and cleaning.

Check to make sure that the providers you choose are accredited with The Joint Commission, the National League for Nursing, or the Foundation for Hospice and Home Care. You may also want to find out if the organization you plan to work with requires background checks for homecare personnel. Also check any references that are available.

Medicare or private insurance generally covers some homecare services, though they may impose certain standards the provider must meet. Often you’ll pay much of the cost out-of-pocket. If you’re having trouble affording the help, look into state or local government programs, and check with your insurance providers and medical advocates to find an alternate solution.

Difficult decisions

No matter how much you want to keep your loved one at home and how much he or she wants to be there, sometimes a nursing home or an extended care facility on an interim basis becomes the only option.

Because this decision can be emotional for everyone involved, it’s important to find the right place — one that’s safe and comfortable, and will meet your loved one’s physical needs. You’ll still be there to provide support and comfort.

The first step is to assemble a list of facilities in your area that provide the services you’re looking for, making sure to check licenses and accreditation. You might start by asking the social worker or patient advocate from the hospital or cancer center where your loved one receives treatment. Recommendations from friends or families of other people who have had similar experiences can also help with the search.

Check the references of your short list and then visit the facilities to see for yourself how the staff interacts with you and with the people who are in residence. Remember, too, that cost can be an issue, since in most cases only a long-term care insurance policy covers personal or custodial — as opposed to skilled medical — care.