I noted in a previous column that providing or overseeing care for elderly relatives often falls to a daughter in the family. But no matter which of us accepts the responsibility, it is never easy. There are often decisions that have to be made in an instant. If you are not prepared to make those decisions legally and emotionally, the process is much more difficult.
I’ve been debating writing a column about some of these issues. My experiences with both of my parents taught me a lot, but I didn’t want anyone to feel that by writing about it I was looking for sympathy or praise – I did what so many of us do, and wish I’d known then what I know now.
Preparing for the nearly inevitable: As medical treatments improve, we are all surviving illness and injury in ways we never anticipated. Our aging population is no different – though years ago certain conditions could not be treated, people may be sustained for far longer periods despite those conditions. Many people may experience a lengthy period of decline due to advances in medicine. They may no longer be able to care for themselves during this time.
As our parents and other relatives age, it is often difficult to begin the conversation about what to do in the event they can no longer care for themselves. But even if you cannot get a relative to tell you what his or her wishes are, you might be able to persuade them to enable you to act when they cannot. There are several documents that provide authority to do particular things. It is important to both know the differences between them, and have the right ones. They include:
Power of attorney: A power of attorney (the name of the document) will enable a designated person (the attorney-in-fact) to act on behalf of the principal (the elderly person in this instance). The attorney-in-fact or agent can be authorized to deal with real estate, financial, billing and other matters. As an elderly person declines, a relative may have to begin addressing charge card bills, checking account problems, or even the predatory magazine salespeople who can sniff out an ailing person and sign them up for 10 years of magazines at exorbitant rates in the blink of an eye. (Trust me, I know.)
The power of attorney will enable the agent to communicate with health care facilities about placement and care. A power of attorney is granted with the agreement of the principal, and can be revoked. Both parties retain the ability to address the matters set forth in the document. It must be properly executed and witnessed.
A power of attorney enabled me to handle my father’s finances and banking (especially important when he could no longer understand his income and expenses), pay bills , deal with his apartment, communicate with caregivers, and handle problems such as with charge cards and those pesky magazine salespeople. Make lots of copies.
My friend and GRAWA member Bob Brenna is an attorney who, when not litigating personal injury or other matters, concentrates his practice on estates and related matters. He told me that many people assume that any power of attorney continues on after the principal’s incompetence – and he warned that people must make certain that they have a durable power of attorney if this is what they wish to accomplish.
He also said that many people are unaware of the fact that the attorney-in-fact’s authority can be limited in time and scope. For example, when one of his clients does not have a close relative they trust implicitly, he usually drafts a springing power of attorney which does not give power to the attorney-in-fact until a doctor certifies incompetence.
As to scope, it can be extremely limited. In fact, Bob prepared a power of attorney once for a client who was going to be in China when a business transaction was to take place, and he limited the power of attorney to only that transaction.
Guardianship: What happens when a person beginning to suffer from dementia fails to recognize his or her condition and refuses to authorize others to act? This is not an unusual scenario. If you are able to get a power of attorney early on, you may avoid the need to go to court later. But sometimes, if a relative has not cooperated and is in need of care or supervision, the family may have to seek guardianship. Guardianship is governed by Article 80 of the Mental Hygiene Law. A description of what it is and how to get it can be found here: www.ocfs.state.ny.us/ohrd/materials/151670.pdf.
This is a costly and sometimes painful process, but at times the only option. Although you can proceed without counsel in seeking guardianship, the handling of these proceedings in different counties can be a real challenge. For example, if your relative is on Long Island and you live in Rochester, you have to file and engage in the proceedings on Long Island. But guardianship may be the only way to ensure that you can make decisions, such as admission to dementia care units, for a relative who can no longer decide. A facility may not take a reluctant resident unless you have guardianship.
Health Care Proxy: The health care proxy provides an agent the ability to make decisions for someone receiving medical care when that person is no longer able to make decisions, whether at the end of life or some other time. It is extremely important to make sure that the agent, often the child or spouse of the person signing the health care proxy, is both willing and able to carry out the wishes of the principal. Sounds easy, right?
But what happens when your beloved family member is terminally ill, can no longer eat food, and you have to decide if a permanent feeding tube should be inserted? The feeding tube may prolong life and even consciousness, but life will be forever changed for your loved one. What if your relative never told you of his or her wishes? What if it is your parent, and your siblings disagree with you about what to do in that situation?
When I was at the doctor’s last week, I found a brochure in the examination room entitled “Advance Care Planning.” Put out by Excellus, it is described as a “community-wide end-of-life/Palliative Care initiative. It provided wonderful guidance on many topics, including how to select a health care proxy, the types of issues to discuss, and how to decide what you, as the patient, may want. It also includes the health care proxy form and other documents.
The brochure may be found here: www.compassionandsupport.org/pdfs/about/B-1576_Excellus_2010_Complete.pdf. MVP also has information about planning on its website, including a link that explains the types of end-of-life choices that may have to be made and the types of directives that may be prepared. That link is here: www.mvphealthcare.com/medicare/documents/MVP_Health_Care_Medicare_AdvanceDirectives.pdf
Living will: A living will enables a person to state his or her wishes about medical care in the event that they develop an irreversible condition that prevents him or her from making medical decisions. This too requires difficult and compassionate conversations. The brochure from provided tools for helping to make these choices.
Other advance directives: There are other directives that you can sign, such as a “DNR/DNI” (Do not resuscitate/do not intubate) and MOLST (Medical Orders for Life-Sustaining Treatment) directives. If you are the person with legal authority to make decisions for another, it is not easy to sign these documents for that person. But it is also not easy to watch someone live with the consequences of treatment that was not desired or appropriate.
When my mother, who has Alzheimer’s, went to the hospital last year she was in constant terror from the sounds, different environment and strangers. She is in a local nursing home, and is very comfortable there. I was relieved to find out during an illness last year that I could limit the possibility of future hospitalization through signing of a MOLST form.
Bob Brenna advised me that an area that many people forget to prepare for is the disposition of a person’s remains. As soon as the option became viable in New York, Bob insisted in including a “Disposition of Remains” form in every estate planning package his firm does. He has just been told of a family dispute which has gotten vicious because the attorney (not of his firm) never drafted this document and there is infighting as to whether to cremate or bury, who gets to determine where the deceased should be buried or ashes should be spread, etc.
Although this column has nothing to do with wills, Bob pointed out to me that there are times that people describe their wishes for their pets in wills. He noted that since wills have to go through probate, the care for the pet, if dependent on the will, would come too late. In other words, your family members should discuss in advance what they want done with their pets, and not rely on a will.
There are many other types of decisions to make for a relative – whether to hire aides or companions, whether your loved one should remain at home or move to residential facility, what type of residential facility and which one. I hope to address some of these issues in the next few columns. If you have any thoughts or suggestions, I’d love to hear them and share them as well.
Jill Paperno is the 33rd president of GRAWA. She is first assistant public defender at the Monroe County Public Defender’s Office, where she has practiced for over 28 years.