Mapping out dad’s future care
Dear Carol: My dad has been diagnosed with Alzheimer’s. He’s considered Stage 2, according to the doctor, which is apparently quite early. Yet, I see many challenges now and of course many more in the future. How do we approach this? – Jon
Dear Jon: Alzheimer’s professionals have designated stages to describe where a person is in the course of the disease. Labels tend to give people a feeling of control, and Alzheimer’s does have a trajectory that is somewhat predictable. However, each person with the disease travels the path at his or her own rate. You are smart to start working with your dad now to map out a plan. Just remember to stay flexible within the plan and help your dad understand the need for this flexibility. People often go back and forth between stages, having more clarity one day and less another.
First, make sure that your dad has all of his legal paperwork in order. He’ll need to assign you or someone he trusts to be his Power Of Attorney for his finances. He’ll also need a Power Of Attorney for Health Care which should include a living will, as well as a Last Will and Testament to indicate what he wants done with his property after death.
Discuss what type of care he’d ideally want within each stage of the disease. This could include adult day care for peer socialization and safety during daytime hours, in-home care from an agency that provides flexible hours, then a memory unit in assisted living or a nursing home, depending on his other health issues. As death approaches, does he want to be kept alive artificially or does he want comfort care during the natural death process through hospice or another end-of-life care program? These are uncomfortable topics, but once they are addressed you’ll have that out of the way. An attorney can help with the legal phrasing.
Tell your dad that you’ll do what is best for him, understanding his wishes, yet knowing that situations change. Let him know that you love him and will be is advocate. But don’t make a promise to never putting him in a nursing home. That could come back to haunt you.
Go online to the National Alzheimer’s Association at www.alz.org. They will guide you through many issues that you can’t even imagine right now. You can look at the site together. They have an amazing “tour” of the brain as it is affected by Alzheimer’s. A view of what is happening to your Dad’s brain will likely increase your patience and understanding and may help him accept some changes he will face.
The National Alzheimer’s Association site also has a caregiver center and a community resource center. You can call them on their 24-Hour Helpline with your specific questions. The number is (800) 272-3900.
You and your dad are starting a journey that will be difficult, but there will also be rewards. As you spend time together, you may forge a stronger bond than ever. Take care.
Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. Her blog can be found at www.mindingoureldersblogs.com.