By Angelina Gamba
Legal planning for people living with Alzheimer’s or dementia can be a touchy subject. It can be emotional for all parties involved to realize that there may be a time when they can’t make decisions for themselves.
This is why legal planning is so important. The earlier the process is started, the more involved the person with the diagnosis can be in deciding their own future.
Melissa O’Connor is an elder law attorney living in South Florida and offers these tips for caregivers.
- Start as Early as Possible
“I’ve found that it’s super important to be a voice and an advocate and to keep shouting about the need for pre-planning and having documents in place while you’re still healthy and young,” O’Connor said. “When you realize you have some cognitive issues, don’t delay! That’s usually when people ignore things and it causes a lot of problems.”
O’Connor emphasizes that the earlier you start planning, the more involved the person with Alzheimer’s is able to be.
“We can actually get in place the wishes of the person with the disease,” she said. “Caregiving is already so hard, so eliminate as many decisions as possible for yourself by getting their wishes early. Then it’s like you have a roadmap.”
- Put Your Team Together
“Decide who you want to be your decision makers and what type of decisions you want that person to be in charge of,” O’Connor said. “You can pick who’s going to be your healthcare surrogate and advocate to doctors for you and have a completely different person in charge of your finances. They might not be the same person, and that can provide checks and balances. Or it can all be the same person, it doesn’t matter. But I want people in the early stages to plan and identify their team.”
O’Connor explained that this is helpful to reduce disagreements over who gets to do what. It can also help others know that you want help.
“Then we can educate the person with the disease and the person who is going to be helping them,” O’Connor said. “Because in the early stages they won’t just take over, so it can be a partnership in the beginning where we talk about things together and then as the disease progresses, one person takes over more and more.”
Having your team early can help them learn how the individual likes to handle their money, and they might be able to introduce you to their financial advisor that they’ve been using. They might be able to tell you their wishes about where they want to live as the disease progresses and can pick out ahead of time a relative they want to go with or even a facility that they researched and like best.
- Have the Uncomfortable Conversations
O’Connor acknowledged that this topic can be uncomfortable to talk about, but it’s necessary.
“It’s a difficult conversation to have because you’re talking about a loss of control and them not being able to make their own decisions,” O’Connor said. “An important thing to keep in mind is that you can keep reapproaching this conversation. It doesn’t need to be one big sit-down meeting. It could be you constantly reapproaching them with different questions until you slowly piece together their vision for what they want.”
She recommends that after you make sure you’ve got a very solid financial power of attorney and your health care surrogate documents in place, those people you pick, especially your financial person, need to know where you bank, what you have and where to find your assets.
“That way, they can step in when the time comes and be able to pay your bills and move money,” said O’Connor.”
They might need to liquidate to pay for your care or anything else you need, so they need to know where you have your money and how much you have. O’Connor says that can be uncomfortable for many people who don’t want their relatives to know how much money they have. She says many also feel shame around how people have managed their money.
“They get this diagnosis and then they’re like ‘I really thought I had 10 more years to work and put things away. I’m not financially ready for this and I don’t want anyone to know how bad it is,’” said O’Connor. “Whether it’s no savings, no retirement money or a lot of debt… they’re going to find out regardless. So, if you tell them up front then there are options like filing bankruptcy. You don’t want to leave your loved ones with a big surprise like that at the end.”
Without a durable power of attorney and health care surrogate documents in place that give your team full legal authority to make decisions for you, your plans don’t matter because they won’t have the legal authority to implement your plans. So those are your biggest and most important documents if you’ve just been diagnosed.
- Consider Guardianship in Later Stages of Disease
“If you have zero good days, then what we would have a conversation about is guardianship,” O’Connor said. “Then we still will have somebody legally appointed to be in charge, but it’s going to be appointed by a judge. So, you’re going to petition to be appointed a guardian because there still needs to be a decision maker.”
You need the authority to make decisions for your loved one and you can only get that at this point through a guardianship proceeding. O’Connor said often families come to her when they’re in the late stages when they are no longer able to hide from it or coach their loved one through things.
“Things start to fall apart and they realize that they need the legal authority to take action,” said O’Connor. “So then we’re left with a guardianship, which is better than nothing, but of course it would’ve been more ideal to have plans in place earlier.”
For more information, visit estate planning information at alz.org or call the Alzheimer’s Association 24/7 Helpline at 800.272.3900.
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