Living with Disability: Denial and Avoidance in Long-Term Planning

Nobody likes to have conversations related to end-of-life issues, asset protection, and how to pay for long-term care. It is hard enough to get people who are young and healthy to discuss wills and child custody. While it may be unpleasant, though, it is one of the eventualities that must be faced when living with a disability.

It is in the best interest of everyone to do this sooner rather than later. If you are avoiding these unpleasant tasks, it is a good idea to talk to someone about your avoidance. There are plenty of reasons people put off doing these things, but often the underlying issue is fear.

I will share a few things that I learned at a recent support group when an attorney and financial consultant spoke and answered questions. Often, having some basic knowledge about complex and unpleasant tasks makes it easier to get started.

Be Proactive

Although people left the support group with personal questions about their specific needs, we all got one clear message—do not wait to get your affairs in order. None of us knows what tomorrow holds, and that is especially true when living with a disability. With the amount of stress that caregivers/spouses/partners are under, they often experience health problems, too. As one man said in our group, “Any one of us (caregivers) could be zapped with a stroke at any time—then where would our loved ones be?”

Caregivers/spouses/family members often are afraid to bring up these touchy subjects. If the person with the disability is willing to approach these scary issues, the process will be easier for all involved. Should you find that you need some support to get through the process, talk to a therapist, minister, or trusted friend about your concerns.

Regardless of your role in the family, here are some basic issues that need to be addressed right away.

1. Medical power of attorney: This is a document that identifies the person who will represent your health care interests in the event that you are unable to do so. The person named in this document, often called a durable power of attorney, is legally bound to work with your health care team to ensure that your needs are met. A part of this document may include your wishes related to end-of-life care, comfort, and other issues should you be unable to communicate your wishes. This is often called a living will. It is important to ensure that your health care provider has a copy of this document, and to ensure that the person you assign is willing and capable to follow your wishes.
2. Financial power of attorney: This document names a person to be responsible for your finances should you become unable to manage them. A durable financial power of attorney would allow someone to take care of all of your financial needs. This includes filing taxes, taking care of your bills, banking, and so on. It is a good idea to have medical and financial power of attorney in separate documents. Discuss this with an attorney for your personal situation. It is also recommended that you have these power-of-attorney documents reviewed and updated every four to five years, and if you change states. The laws change all the time, and every state has its own way of doing things. Although you can download forms online, you really need to get an attorney to review the documents (regularly) to ensure that your documents are not considered “stale” or out of date.
3. Wills: If you have specific household items, jewelry, and other property that you wish to leave to specific people, a will is also necessary. You may name an executor of your estate, and that person may or may not be same as your power of attorney.
4. Life insurance, retirement plans, and other policies: Life insurance policies and other financial documents often require that you list beneficiaries. It is important to keep that information updated. For example, if your spouse dies or you get a divorce, be sure to change your beneficiary on your policies. Be sure to keep all of these documents in an easily identifiable place so that the person who has power of attorney has access to them. Many people use a safe deposit box in a bank to keep important papers, or have a home safe.

Communicate

It is critical that you communicate with your loved ones about your wishes, assets, and needs while you are physically and cognitively capable of doing so. Find someone you trust to help you with these tasks, and keep the documents on file with the people who need them—medical providers, attorneys, and financial advisers, to name a few. Taking care of these issues often provides some peace of mind to caregivers, loved ones, and family members.

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