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First Steps for New Caregivers: How Did I Get Here and What Do I Do Now?

Perhaps it started gradually. You have a watchful eye and you noticed things about your loved one. You talked to other family members about what you saw.

Eventually, you realized you were the person who was always checking in and making sure that important health care activities were taking place: Did the blood work get done? Did your loved one tell the doctor about the latest symptom? You found yourself acting as the de facto care coordinator.

Be effective

Is your situation like that? Well, there are a few things you can do right now to prepare for the future. This is the right time to learn to become an effective family health care coordinator. Take the time now to learn about medication management and create a medication list that works for you and your loved one. This is also a great time to work with your loved one to make sure all of the necessary paperwork is in place. Advance directives, living wills, powers of attorney—all of this can and should be done before your loved needs time-consuming daily care such as bathing, grooming or help going to the bathroom.

Once you have mastered the art of being the family health care coordinator, it’s time to become the family care planner. What are your loved one’s wishes as the disease progresses? To stay at home? Move in with other family members? What, if any, financial resources are in place?

Find support

This is also a great time to tackle the all-important question of who is going to help. Maybe your brother across the country can handle medical bill reconciliation. Your mom’s sister can be assigned the task of keeping the rest of the family informed. As the family care planner, you need to learn to coordinate it all, without being the only one to do it all.

But that’s just one of the many ways this can play out. Perhaps it didn’t happen gradually. Maybe one of your parents has been employing excellent coping behaviors that have masked their spouse’s decline. Perhaps your loved one’s changing behavior was written off as aging, or depression. Or masked by another chronic condition.

Then one day an event occurs and it feels out of the blue. A car accident. Erratic behavior. Wandering. An undeniable loss of communication. All of a sudden you are the family caregiver for a loved one with Alzheimer’s disease.

You might fear there is no time to stop and learn all you want to learn, and your panic is full blown. You need a plan of action, resources and direction. What to do first? How can you tell the difference between a trusted resource and one that is not?

Learn to cope

Caring for a loved one with Alzheimer’s disease involves all of this and more: you need to provide hands-on personal care; you need to learn how to cope with dementia behaviors; you need to discover new ways to communicate with your loved one; you need to become a champion health care coordinator and you need to take care of yourself so that you can do all of these things effectively.

Lisa Winstel, Chief Operating Officer, Caregiver Action Network, [email protected]

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