Andrew is a well-educated and successful business development consultant. He and his wife Alice are raising three children, ages 8, 10 and 19. None of the skills and knowledge he has accumulated during his more than 50 years of life prepared him for knowing how to help his mother when she fell ill and needed long-term care. That is when he became a long-distance caregiver.
Andrew's mom was living in Florida and, although he wanted her to move closer to him so he could help her find the best care choices, she wanted to “stay put.” So began the strain of long-distance caregiving, at which point he realized he wished he could “turn back the clock” and talk with his mom and siblings about what choices and decisions to make as her need for long-term care grew.
Andrew regretted that they had not talked about what her preferences would be should she become ill and reach the point where she could not make choices and express preferences for herself. He acknowledges, “Having that conversation would have been difficult, but it would have been better to have had it while she could still participate in planning her own care. We just put it off until it was too late.” Also, he did not know enough about the resources and care choices where she lived to make the right decisions on her behalf. He did not even know what questions to ask or whom to approach for help. Stressing how challenging that process can be, Andrew added, “You can get a PhD, run a business and raise three children and still have absolutely no idea how to deal with a situation like this. It was very humbling – I was starting from scratch and learning it all at the same time as having to make these difficult choices.”
What would Andrew advise others do to avoid such a situation? He emphasizes the importance of having the long-term care discussion with your parents as soon as possible. “If you wait, you don’t know what they want and all you're doing is guessing. And if you and your siblings don’t agree, no one knows what to do.”
Andrew learned the hard way. Planning ahead would have given him, his siblings and his mother more choices and control over their situation and more comfort knowing that her preferences were being met.
Everyone’s situation is unique. If families do not talk about these things in advance, they will not know what to do when someone in the family needs long-term care. “We know we have to discuss sex, drugs and alcohol with our kids; it's just as important to discuss long term care with our parents.” Andrew hopes the “Own Your Future” campaign can help more families begin to talk about long-term care and plan for it in advance to make the best and most informed choices.