Hospice can help

MUSKEGON — At HomeIn Michigan alone, it is estimated that one million people are actively providing care for a loved one – usually an elderly parent. Providing care can be very challenging with the caregivers themselves often experiencing physical, emotional and financial stress as a result. And, unlike professional caregivers, family caregivers typically haven’t received any education or training on how to best provide care – rather they are thrust into the role and simply do the best they can for their loved ones.

Each year, hospice programs depend on thousands of family caregivers to teach them about their loved ones. They know that the family caregivers are the foremost experts on their loved ones. These family members or friends are often the ones who made that first call to see if it was time for hospice. A common regret that is heard from caregivers is, “I wish I had called hospice sooner.”

Family caregivers do all they can to provide their loved ones with the opportunity to die a good death; however, they define that term, “a good death,” for themselves. Without strong family support, most hospice patients would not be able to die at home. Even though most of these family caregivers have no idea what they are getting into, about 97% of the time they succeed in keeping their loved one at home until they die.

Hospice teams work with these caregivers to provide the tools, training and support they need to properly take care of their loved ones. Following are some “insider tips and tricks” so that if the need arises for you to be a caregiver – you will have a good head start.

Tips and Tricks

Go to doctor’s appointments with your loved one to help ask questions about the normal progression of the disease, benefit vs. burden of testing and treatment, medications, etc… as well as to communicate your loved one’s desire for comfort care.

If you or your loved one is already in a hospital or nursing home system that has its own hospice program – consider that program as an option, not the only answer. You have the legal right to choose the hospice provider that is best for you.

If possible, have several family members present during the first information visit, sign-on process and initial assessment. This gives everyone the opportunity to hear first-hand, how hospice works – and to get questions answered.

Don’t wait to request a meeting with the entire patient care team (typically including a nurse, hospice aide, social worker, spiritual care advisor and volunteer). Each member has an important role in supporting the patient and the family.

You are in charge of your care plan. If you don’t like the treatment plan, don’t agree to it. Ask what else can be done.

Make a call after 5 p.m. or on the weekend within the first few days of your hospice care experience, just to see what kind of response you get. Doing this in advance will make it easier to call when you need to.

Caregiver burden doesn’t have to occur. Ask if a hospice volunteer can: run an errand, clean the house, cut the patient’s hair, grocery shop, wash the linens, or provide respite so you can have a few hours for yourself.

When a patient care team member tells you that it is time to call your family… they mean now. If they go over the signs and symptoms of active dying – that is their hint that it is time to say goodbye. Don’t wait.

Take Action

Talk to your family, physician and others while you are still able to do so about your wishes and give them copies of your Durable Power of Medical Attorney and Living Will.

Haven’t completed your Durable Power of Medical Attorney and Living Will? Use Internet resources to help you get it done – for free or call the Alzheimer’s Association at 800.272.3900 to obtain a list of local resources or check out our Community Resource Finder.

At the next physician appointment you attend with your loved one, let the physician know that when it is time for hospice, you have a preferred provider.

If your loved one is hospitalized, let the hospital discharge planner know if you have already chosen a home health agency, nursing home or hospice.

Call the Alzheimer’s Association at 800.272.3900 to obtain a list of local hospice options.