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Talking with Your Parents About Disability

A caregiver called our office recently to say his mother was being discharged from the hospital, was no longer able to live alone, and that he needed to hire an attendant. Stressed out and confused, he didn’t know what to do. We asked him what his finances were, so we could give him an appropriate referral. He said he didn’t know—he had never talked with his mother about money.

For many of us, the response would have been similar. Often, the conversations we need to have with our parents about long-term planning don’t happen until there is a crisis. Then we have to try and catch up, stressed by the many details that need to be addressed under very trying circumstances. Carefully considered decisions—an essential part of caregiving—are hard to come by.

It’s often difficult to know when and how to have a conversation about long-term care planning. As adult children, we may be reluctant to bring up the subject so as not to offend our parents or to imply that they are becoming sick or frail. Parents may fear that we are planning on moving them into a facility, as opposed to trying to help them maintain their independence.  It may seem that no time is the “right” time” to bring up this topic.

Sometimes, it’s easier to start the conversation by sharing your own experience or a story from the newspaper. For example, you might say, “I decided I needed a Will and consulted an attorney,” or “I saw an article in the paper about senior services.”

When talking about present and future needs, it is important to plan with your parents, not for them. Setting a date and time to have a conversation and including as many family members as possible will increase the likelihood of success. One way to start would be to ask your parents to talk about their perceptions of their needs, now and in the future. An agenda might include:

  • Health care wishes
  • Financial information
  • Wills and trusts
  • Names/addresses of close family friends
  • Doctor’s and dentist’s names and phone numbers
  • Insurance policy information

Additionally, you might discuss any changes their home might need to accommodate a disability. Increased lighting, grab bars for the bathroom, or people to help with cleaning, cooking, gardening, or transportation are all possibilities.

It might be uncomfortable to have these conversations. We might find ourselves resistant to bringing up these subjects, and we might be met with anger or resentment from our parents when we do. If this happens, remember, you don’t have to discuss everything all at once. Start small and with things that might not be so emotionally loaded. Continue to talk about these things when you get together the next time. The more you plan ahead for yourself, the more you can encourage your parents to do the same. Do you have a Will?  Advanced Health Care Directive?

Let your parents know you are concerned and care about them. But as long as your parents do not have dementia, they have a right to “bad” decisions or “bad” planning. This might make your role harder, but you cannot bully them into doing things they are not ready or willing to do.

If you think your parent does have dementia, then you’ll need to proceed in a different way. To start, it helps to work with your parent’s physician to get a diagnosis regarding memory problems your parent is having. Second, you need to assess whether your parent is feeling threatened and if this is due to his or her dementia. If so, bringing up these subjects might make him or her even more scared and more resistant to talking. Ask help from a trusted friend, attorney, or pastor to calm and reassure your parent. Our tendency might be to want to take over and to start to organize things. This will generally make matters worse. Ask your parent to help you by doing certain things. For some, saying, “I know sometimes you forget things. I would like to help make it easier for you,” will allow your parent to feel respected in giving up some tasks he or she used to do. For others, mentioning memory loss at all could lead to defensiveness. In that case, approaching your parent with, “I’d like to help you. Can you tell me what I can do to assist you?” could lead to a further conversation about long-term planning and letting you help your parent. If your parent says everything is fine, you then you might try to point out one little thing that you noticed might need doing, for example ironing the clothes or pruning the roses. That will help your parent feel less threatened about your “taking over” his or her life.

Our family consultants can help you navigate the communication that can lead to good care planning with your parents. Feel free to call FCA at (800) 445-8106, or email info@caregiver.org.

© 2012 Family Caregiver Alliance.