Dimensions of Dementia
The beginning of a new year is a good time to think about getting organized in the legal and financial areas. So when looking for a program for our Alzheimer’s Association memory loss/caregiver support group on Marco Island, I thought about elder law.
As a long-distance caregiver for my mother with Alzheimer’s in the late ‘90s there was no advice available online, no expert to guide me in helping mom manage her financial and legal issues. I was a neophyte caregiver and it didn’t help that we were separated by distance. Mom lived in Phoenix, Arizona, while I lived and worked near Pittsburgh, Pennsylvania.
When my local attorney said mom’s do-it-yourself will executed with dad in the 1930s was not sufficient, I took her to an attorney near her Phoenix home. My generous and loving mom, with the disease damaging her brain, resisted all the way. But the attorney found her competent enough to make out a new will in case anything was left over after her care. (There wasn’t). We also visited her bank together so I could become a co-owner on her account. Another trip found me at the Phoenix social security office where I signed papers that allowed me to be a payee on her account so that I could channel its funds for her care.
If only there had been someone to advise me then, someone like Lance McKinney, elder law attorney at Osterhout & McKinney in Naples who spoke recently to our Alzheimer’s Association Memory Loss/Caregiver support group. According to McKinney, elder law is a newcomer in legal practice with the first elder law attorneys beginning practice in 1993. Mom’s dementia was beginning then but, unfortunately, I had no awareness of the existence of elder law attorneys.
McKinney prefaced his talk by saying seventy percent of people don’t have any legal planning in place, not even a will, a surprising statistic. He also said there were seventy five to eighty certified elder law attorneys in Florida with a number of them practicing in the Naples area. They are easily located online.
McKinney first talked about medical issues and then financial. Three medical forms are important he said, the Heath Care Surrogate, a Living Will, and a Do Not Resuscitate or DNR form. Free health care surrogate forms are available from hospitals according to McKinney. On the Aging with Dignity online site, you’ll find Five Wishes, a living will that talks about one’s personal, emotional, and spiritual needs as well as medical wishes. Once filled out and properly signed, it is valid in Florida and 27 other states. It costs $5 for a single copy.
When you name a health care surrogate in writing, that person can make medical decisions for you only if you become incapacitated and are unable to make your own decisions. That might include the right to choose or refuse any type of medical treatment or diagnostic tests and to make decisions on admission to health care facilities, according to printed information from the Osterhout McKinney law firm. It can be a family member or friend living near you or out of state. If, however, you have no health care surrogate, the law allows your next-of-kin to step in and act on your behalf.
McKinney said the living will is used if you are unable to tell doctors what life sustaining treatment you want and whether to keep treating you. The law firm’s literature states a living will is a written declaration stating your wishes regarding the use of any life-prolonging medical treatment. In Florida, the living will covers machines as well as the use of artificial nutrition and hydration or feeding tubes. As long as you are competent you can make your own decisions about your medical treatment. A living will is used only if you are not able to do so. One issue that could happen without a living will is that others may try to prove your intent by statements they’ve heard you say in the past. It can become a problem when there is conflicting information. If you are incapacitated, your living will cannot be used unless two doctors certify in your medical record that at least one of the following conditions is met: you are terminally ill, you are in a persistent vegetative state, or you have an end-stage condition. As the information points out, whether a person meets the above criteria can be a subjective decision, making it critical that your physician and family understand your wishes.
The third form used in medical decision making is the Do Not Resuscitate or DNR form. When a doctor signs it, according to McKinney, he is provided with civil immunity from being sued for standing by or not doing something when a patient is critically ill. He added that, the DNR directive has to be on the yellow DNR form to be effective in Florida. This form can only be used when the heart stops and breathing stops. It cannot be used when a person is still breathing, McKinney said.
Answering a question about HIPAA, the Health Insurance Portability & Accountability Act, McKinney said that when a person is incompetent, a health care surrogate can release his/her records if the patient has given permission for release to certain persons. A general release is helpful when dealing with insurance.
On the financial side, having a Power of Attorney is important. From the firm’s literature, when you sign a Durable Power of Attorney (DPOA) you are giving legal authority to someone (called your agent or attorney-in-fact) to act on your behalf. This provides a simple way for someone to manage part or all of your financial affairs. The use of the word, “durable” coupled with language in the document which states it continues to be in effect if you are incapacitated, assures that your agent can act at any time as long as you are living.
Caution must be taken when signing a DPOA because it is valid and the agent may act immediately upon signing the document even if you are competent. So though your agent is required to act in your best interest, there is no formal supervision of your agent’s actions. So, it is very important to name someone that you trust completely. According to McKinney, if you have no plan, your spouse and adult children can make medical decisions, but not financial ones. Also, if a DPOA is from another state and doesn’t meet Florida requirements, it cannot be used for real estate decisions.
From the Osterhout McKinney literature: The DPOA agent’s power is revoked if you are adjudicated incapacitated by the Court, pass away, or you revoke the agent’s authority to act in writing. Property subject to a DPOA can include all real and personal property including stocks, bonds, mutual funds, bank accounts, and other intangible personal property. There are special provisions that are necessary in a DPOA if you may need to qualify for Medicaid in the future. Also many banks and brokerage firms require you to sign their own DPOA forms so plan to check with all the holders of your assets as to their requirements. The DPOA law was rewritten in October 1995, so it is important to have a DPOA signed after this date.
If a loved one refuses to understand that he/she shouldn’t be in charge or refuses to leave the house for a facility, a DPOA may be used. However, when the situation becomes critical because the loved one won’t accept help, a guardianship procedure may be necessary. This is only used as the last resort as it means taking the person to court to prove their incompetence, plus the cost is high, usually $7,000 to $8,000 according to McKinney. Once established, the person who started the procedure has to report to the court as to how he’s taking care of the one deemed incompetent.
When asked about bank accounts, McKinney said, the person whose name is on the account, the principal, always wins in a dispute with a POA agent, whether that person is competent or not. So, if a spouse or an adult child is not on the account as co-owners, they cannot access the money in the account without the consent of the owner.
McKinney also covered the three licensed areas of long term care: independent, assisted living (which can be in one’s home or a facility), and skilled care. Memory care is offered at both the assisted living and skilled care level. He stated that assisted living costs can be from $5,000 to $6,000 a month, while skilled care is from $10,000 to $14,000. Costs for my husband, Tom’s care at Sanitasole, an assisted living and memory care facility formerly on Marco Island, were from $6,400 a month in July 2011 to almost $8,000 in May 2013 when he died at the age of 83. He was a facility resident for less than two years, while my mom who died at 96 spent five years in assisted living and another five in a nursing home. Her care was paid for by the sale of her home, her savings in bonds, and social security. Mom’s funds covered nine years of facility care and Medicaid paid for her last year.
Because of the complexity of the financial area, check in directly with Medicaid and Veteran’s Affairs as to how and whether they can help pay for the high cost of facility or in-home care. If you are one of the 70 percent of people who have done no planning for the future, today would be a good day to start.
There is free advice and brief service available by calling the senior legal helpline at 1-888-895-7873 for Florida residents age 60 and older for civil, not criminal legal problems. Limited funds are also provided through the Older Floridians Legal Assistance Programs, 1-800-96-ELDER, with priority given to those with the greatest economic and social need.
The Florida Bar Lawyer Referral Service and local bar association lawyer referral services assist consumers in contacting an attorney. Call 1-800-342-8011 for information about your local bar association. The Bar has four specialty panels: Low-Fee, Elderly, Disability and AIDS. If your personal circumstances qualify you for referral to a specialty panel, you will receive a free initial thirty-minute office consultation. After that, fees are negotiable, based on the client’s ability to pay. Check http://elderaffairs.state.fl.us/doea/legal_services.php for this and other information.
Shirley Woolaway has an M. Ed. in counseling and worked in journalism, in business, and as a therapist in Pennsylvania. She has 25 years personal experience with dementia as a caregiver for family members with Alzheimer’s disease, and nine years as the coordinator of an Alzheimer’s Association memory loss/caregiver support group, earlier in Pennsylvania and now on Marco Island. We believe that Shirley’s insights will prove helpful to many of our readers.
For help on all aspects of Alzheimer’s disease and other dementias call the national Alzheimer’s Association confidential, 24/7 helpline at 800-272-3900 or the local Bonita Springs office at 239-405-7008 for care consults and support group information. Also helpful with local educational programs, workshops, and support groups, is the Naples Alzheimer’s Support Network, 239-262-8388.