Caregiving Conversations to Have With Your Loved Ones in Sickness and in Health

What are your financial needs?

If you’re living on a fixed or limited income, know in advance how adequate your insurance and benefits are to cover expenses in times of illness. Speak with an insurance adviser or a representative from organizations that provide benefits, such as the VA or a state agency that oversees public benefits. Express to your future caregivers what you know will be accessible to them and you to stay afloat financially and whether they should anticipate utilizing public benefits, such as Medicaid, if you’re not situated to pay for your care independently.

Do you understand any workplace policies and benefits for illness or caregiving?

It is smart to review your company’s policies and benefits with an HR adviser. If you experience a medical crisis, you’ll breathe easier if you know you are eligible for medical leave, short- or long-term disability, health savings accounts or other resources that can ease financial burdens. If you’re called to provide care, your employer may offer flexible work arrangements, paid caregiver leave or employee assistance or legal assistance programs. The support of an employer in times of crisis will be a relief if the need arises.

Have you created an emergency medical plan, and where is it located?

Being organized and sharing necessary information will help your caregivers tremendously. Don’t tell your family “everything is taken care of,” especially when it’s not. Give them the details, such as the contact information of your attorney, where you keep your important documents and when you created them, the list of people you want them to call for assistance, and who has agreed to step up if you need help.  

When You’re Advancing in Age or Diagnosed With an Illness

At the point of diagnosis of a chronic, debilitating or life-limiting condition, you may be experiencing complicated emotions and reeling about what the future holds. It may be hard to address certain subjects but doing so makes sure your voice is heard.

What are your short- and long-term plans for medical treatment?

Bring your caregiver or a trusted person with you when you speak with your medical providers. A second set of ears will help you better retain information that is discussed in your appointments. You may value the thoughts or opinions of your caregivers on how they understood the discussion and the path forward. Express to your family and caregivers what you do, and do not want for your care. Tell them if there is a certain point of decline at which you would prefer, or be open to, making a move to residential care. Discuss your feelings on palliative care and hospice. Let them know if you would be interested in experimental or clinical trials or if you have opinions on one treatment center over another.  

What are your mental health needs?

Millions of Americans are affected by mental illness. A diagnosis of mental illness, or living with an ongoing mental illness, is not something you should go through alone. Having a frank conversation about it with your closest people and community will mean greater competency for your caregivers in understanding your circumstances and a better crisis response if needed. In addition to discussing your wishes, create a separate health care directive that gives your caregiver the authority to consent to mental health care and lists your preferences for future treatment. Your surrogate should understand your wishes and be willing to take responsibility so they will best be able to follow your directives.

Do you have a caregiving plan for a natural disaster?

I live in Florida, which has been ravaged by hurricanes. Lives are frequently, tragically, lost when people with high-care needs cannot evacuate or lose access to critical equipment or medication. Any family with specific requirements must talk about how to ensure continuity of care in times of disaster. This means planning to purchase a generator so that the home won’t lose power; having a few safe places to go and a transportation plan; knowing when and how to get prescriptions filled on an emergency basis; and registering with the special needs shelters in your area and making sure your local authorities know that someone in your household will need help.

Do you want a Do Not Resuscitate (DNR) or any other physician-ordered directives?

If seriously ill or near end of life, this is a conversation you and your doctors should have. You’ll want to talk about your condition and what you may expect in the future. Have them explain CPR to you and the benefits and drawbacks in administering it to a person in your present condition. When the doctor writes the DNR document, share it with your family and discuss it with them. I’ve seen clients wrestle with guilt or second-guessing if a DNR is followed. They sometimes feel that they deserved some input into whether CPR should have been given. If you can openly share your end-of-life wishes with them, it may spare them some future grief.

What does a “meaningful death” mean to you?

This is a conversation you can have at any time, but it becomes much more real when faced with a life-limiting diagnosis. Tell your loved ones what would comfort you most if you are dying. Plan your own funeral or explain why you don’t wish for one to be held. Share cherished memories and what you are most grateful for in your life. Express your adoration, pride and love for your family and friends now, when you are able.