When You Are Still the One Caring

You have a diagnosis, and someone else depends on you. A parent, a spouse, a disabled adult child. Your care for them can continue, with a plan that does not rely on you alone.

Can I keep caring for someone after my own diagnosis?

Often, yes, especially early on. But your care plan for them now needs a second person in it.

Some people are diagnosed while they are already caregivers: for an aging parent, a spouse with another illness, an adult child with a disability. One woman with an advanced diagnosis of her own wrote about researching care for her mother, who has early-stage Alzheimer's, and finding facilities reluctant to give straight answers.

There is no rule that says you have to stop. But the person you care for depends on you, and your diagnosis means that, sooner or later, you will need someone to share that load. The best time to arrange that is while you can choose who and how.

Who needs to know?

Their care team, at least one other family member or friend, and anyone who would step in if you could not.

• Their doctors and care team. A doctor, care manager or home health agency who knows that the primary caregiver has a diagnosis can plan for more support, check in more often and help with referrals.
• A backup person. A family member, close friend or neighbor who knows the routine and could step in tomorrow if they had to.
• Your own doctor. So your care plan accounts for the fact that someone depends on you.

What should my backup plan include?

Everything someone would need to take over for three days without calling you.

Write it down, keep it somewhere obvious, and give a copy to your backup person:

• Who decides. Their healthcare proxy and power of attorney, and who should be called first.
• Medications. Names, doses, times, the pharmacy, how they are refilled.
• The daily routine. Meals, bathing, sleep, what calms them and what upsets them.
• Contacts. Doctors, home care agency, neighbors, family.
• Practical details. Door codes, where keys are, how the thermostat works, the pet.
• Your own information too. Your diagnosis, your proxy, your doctor, in case something happens to you first.

For a fuller plan, see Building an Emergency Plan Before the Crisis Hits.

Where can I get help with their care?

Start with your local Area Agency on Aging, through the Eldercare Locator at 1-800-677-1116, and ask about respite.

• Respite care gives you regular breaks: someone comes in for a few hours, or the person you care for spends a day at an adult day program or a short stay in a care community.
• Home care for help with bathing, meals or medications.
• Care management from a social worker or geriatric care manager who can coordinate everything.
• Benefits counseling to see what Medicare, Medicaid or veterans' benefits might cover.

The Alzheimer's Association helpline at 800-272-3900 can also help you find local services, any time of day.

What happens when my needs grow?

Decide now, with your family, how care for the other person will continue when you can no longer provide it.

This is the hardest part to plan, and the most important. Your condition may progress faster or slower than theirs. Questions to settle while you can:

• Who becomes their primary caregiver if you cannot be?
• Would they move, would someone move in, or would more paid help come in?
• Could the two of you live together with support for longer, or in a care community that takes couples or family members together?
• What would they want? Ask them too, if they are able to say.

Writing these answers down protects both of you. It means your care for them continues in the way you chose, even when someone else is carrying it out.