Читать книгу The Complete Caregiver's Organizer - Robin Porter - Страница 8
Оглавление“It is always wise to look ahead, but difficult to look farther than you can see.”
—Winston Churchill
Grandpa’s Gift
Dealing with the seemingly endless amount of paperwork following the loss of a loved one can seem like drudgery, especially when grief is already wearing you down. My mom and I were doing our best to put things in order after my dad passed away, but we found that we could only handle bite-sized chunks at a time. One day, as we were heading to the bank to have some forms notarized, my then four-year-old son inquired where we were going. Without really thinking, my mom told him that Grandpa had given her some papers to sign. He thought about that for a moment, his little forehead scrunched up in concentration, and then asked, “Did Grandpa drop them down from Heaven?”
My mom, caught off guard by his question, got a bit teary-eyed and responded, “No, he left them here for me before he went to help me out.”
“Oh,” said my son, “that was nice of him.”
My mom and I exchanged a look and broke into much-needed smiles. Oh, to be four years old and see the world so simply!
Of course, my son was right; it was nice of my dad to leave things in order. We were thankful that he was organized and made it easy for us to find important documents, including account numbers, insurance information, and even the deed to his burial plot. It made a difficult time much easier. That was my Dad; always thinking of other people.
However, I discovered that when it came to end-of-life wishes and funeral plans, he had left no information. I always assumed that he and my mom had discussed these things, but they never did. As is turned out, a do not resuscitate (DNR) or healthcare proxy was not needed, but I couldn’t help wondering what would have happened if he had been put on a respirator or other life support. Did he want those measures taken? Not knowing his wishes would have left us with a heart-wrenching decision. As far as funeral plans, I suspect my dad didn’t really care. He would have been happy to have a no-frills affair involving a fishing boat and some cold beer! But since we didn’t know what he had in mind, we did our best to plan a funeral that included the things he loved, lots of wonderful memories, and the many people whose lives he touched.
After the dust settled, and my mom and I had some time to just sit and talk, we decided that the two of us needed to have some important conversations. Thankfully, she realized the significance of putting her affairs in order and expressing her wishes, so we consulted an attorney and created a living trust, with me as trustee. In the process, we talked about everything, from what she wanted to wear at her funeral (“Bright red, because I’ve never been a demure, pastel person,” she declared.) and what music to play (“Something upbeat, please.”), to starting a small college fund for my son. We discussed her end-of-life wishes and she signed a DNR. We took a financial inventory and made a budget. These discussions were sometimes difficult, but they were also some of the most meaningful conversations we had. And, once the documents were signed, copied, and put safely away, we felt a sense of relief. It was reassuring to both of us that things were in order. It occurred to me that we should have had these conversations much sooner, but at least we had them before it was too late.
On our way home from the final visit to the attorney’s office, my mom let out a big sigh and announced, “Well, now that that’s done, we can concentrate on more pleasant things.”
“Like what?” I asked, though I had a sneaky suspicion.
She replied, “Stopping for a hot fudge ice cream puff, of course.”
I knew it!
Looking Ahead
When asked, most people agree that having conversations about end-of-life wishes and putting their affairs in order is important, but studies show that nearly 44 percent of those 45 to 65 years old do not have a will or advance directives. In 2013, a national campaign called the Conversation Project conducted a survey that revealed that 94 percent of Americans felt these discussions were important, but less than one-third actually had these dialogues with loved ones. Furthermore, while 60 percent of those surveyed felt that making sure their family was not burdened by difficult decisions was “extremely important,” 56 percent of respondents had not communicated their end-of-life wishes. The campaign, which is aimed at helping people initiate discussions about end-of-life wishes, found a variety of reasons why folks hadn’t broached the subject, including: “It never seems like the right time,” “I don’t want to upset my loved ones,” “I’m not sick yet,” and “I don’t know how to start the conversation.”
These conversations are especially important if you are providing care for someone, but ideally, they should occur much sooner. Accidents or sudden illnesses can strike at any age, which means all adults should have advance directives in place. Obviously, the best time to discuss end-of-life wishes and the type of care preferred is before a health crisis occurs, and the person is under duress. Aging, illness, trauma, and even medication can make it impossible to have meaningful conversations, and no one wants to make hasty choices in a time of crisis. By preparing in advance, you can reduce stress for yourself and your loved ones and make educated, thoughtful decisions. Think of it as a gift for both you and your loved ones.
Legal Documents
Having honest, open conversations is a great starting point, but the decisions must be put in writing to be legal. Often the term “advance directives” is used to describe several legal documents that describe a person’s preferences regarding treatment if he or she experiences a serious accident or illness. These legal documents speak for you (or your loved one) if you are unable to speak for yourself. If a person is unable to make their own healthcare decisions, family members and physicians will consult a patient’s advance directives for guidance. These documents typically include:
A Living Will—A legal document used to outline a person’s wishes regarding life-prolonging medical treatments, such as a respirator, ventilator, feeding tube, or resuscitation. It may also be referred to as an advance directive or healthcare directive. Because laws differ by states, be sure to consult an attorney to find out what your particular state requires. Living wills are essential because they inform family members and healthcare providers about an individual’s preferences for medical treatment in the event that he or she becomes incapacitated. (It’s important to note that a living will is different than a living trust, which is used to hold and distribute a person’s personal assets.)
Medical or Healthcare Power of Attorney (POA)—This legal document, which may also be called a Durable Power of Attorney (DPOA), designates an individual to make medical decisions for someone if he or she is unable to do so. This person, referred to as a healthcare agent or proxy, is only able to make healthcare decisions. This differs from a power of attorney, which authorizes someone to make financial transactions for an individual if he or she is unable to do so.
Do Not Resuscitate (DNR) Order—This is a written request to forgo resuscitation efforts such as cardiopulmonary resuscitation (CPR) or advanced cardiovascular life support (ACLS) if a person’s heart stops or breathing ceases. It may also be called a “No Code” or “Allow Natural Death” directive. Advance directives do not have to include a DNR order, and a person is not required to have advance directives in place to request a DNR. A physician can put a DNR order in an individual’s medical chart. Keep in mind, many states require a separate DNR form, which is state-specific and bears the signature of a physician. A living will that states DNR wishes is not usually sufficient.
Starting the Conversation
Talking about death and dying can be difficult, but having these conversations can actually bring peace of mind and make things easier for everyone involved. If you’re finding it tough to broach the subject with a loved one or make your own wishes known, you can visit www.theconversationproject.org, which offers a helpful “Starter Kit” along with other valuable advice. The kit gives you step-by-step instructions for thinking about what matters to you most, deciding how much information you would like to receive as a patient, and how long you want to receive medical care, as well as how involved you want loved ones to be. It even includes conversation starters, such as “I was thinking about what happened to ________ , and it made me realize how important it was to have a talk.”
The Conversation Project also offers these tips when having a discussion with loved ones:
Be patient—don’t try to steer the conversation.
Remember it’s okay to disagree.
Don’t judge.
Nothing is set in stone—you can always revisit your wishes.
You don’t have to cover everything in one conversation.
Emergency and hospital staff in most states are still required to give CPR or ACLS if a separate DNR doesn’t exist. To make sure your wishes or those of a loved one are carried out, you must have a DNR signed by your physician. You cannot create this form on your own; you must obtain an official form from a physician’s office. You must also have a copy of this form on file at each medical facility or on your person (or the person for whom you are caring).
These legalities may seem overwhelming (and perhaps a bit depressing), but they are vital to ensure that the wishes of you or your loved ones are carried out. Having these documents in place will also make an already stressful situation easier on caregivers.
Many of these documents are available online, but experts recommend consulting an attorney, as laws and terminology differ by state. A professional can guide you and your loved one through the process, explain the options, and answer questions along the way. They may also help your loved one consider and plan for situations he or she hadn’t thought of before. Elder care attorneys specialize in elder law and, therefore, can be especially helpful for seniors who are putting their affairs in order. The National Elder Law Foundation (nelf.org) can help you find a local attorney. If possible, be sure to select a certified elder law attorney. The cost of preparing these documents is generally affordable, but if fees are a concern, many communities offer free or low-cost legal resources.
Once these documents are completed and filed, it’s important to share the contents and location with all parties involved. Spouses, adult children, or other caregivers should know where the originals are kept and have personal copies. Also, before appointing a POA, be sure that person understands the wishes of the care recipient and is willing to accept the responsibility. Finally, it’s a good idea to review these documents every year or so, as things change.
Other Important Documents
In addition to advance directives, it’s necessary for caregivers to know how to locate and gain access to a long list of essential documents that belong to the person for whom you are caring.
Once you have located these documents, it’s recommended that you make copies (be sure to copy both sides) and store originals in a bank safe-deposit box or portable fireproof box. Copies can be kept at the care recipient’s home, but as caregiver, you should keep a file cabinet or binder with copies of these important documents for easy access. They can also be kept in electronic files as long as they are backed up. Additionally, copies of certain legal documents, such as wills, trusts, or advance directives, should be kept at an attorney’s office. Remember, a copy of a healthcare directive and DNR should be kept on the person (purse or wallet), as well as on file at the physician’s office and other medical facilities.
Checklist of Important Documents
Source: pbs.org/caringforyourparents (in conjunction with AARP)
Visit www.sprypub.com/Caregiver to download.
Again, this list of documents may seem daunting, but chances are many of these papers are already filed appropriately. It’s simply a matter of familiarizing yourself with them. If you do have to track certain documents down, it’s far better to do it before they are needed, such as during a health crisis or after a sudden death. The last thing you want to be doing is searching through drawers and closets trying to locate necessary information.
The Money Talk
Like many women of her generation, my mom had always let my dad handle the finances. She knew where things were and what accounts they had, but deferred bill paying and investment management to her husband. So, it was no surprise that she needed help assessing her financial situation. And because she really didn’t have a good concept of expenses, her initial reaction to her net worth was “my, that’s a lot of money.” It’s true that after a lifetime of hard work and prudent savings, my dad had left my mom financially comfortable, but she was far from wealthy. Once we listed her sources of income (a pension check that would stop coming in a few years and a small social security check), along with her monthly expenses (including very high health insurance costs), she began to see that “a lot” was a relative term. Furthermore, we estimated that her savings had to last for possibly 20 years or more (her mother lived well into her 90s, and at the time, there was no reason to believe that my mom wouldn’t do the same), and may have to cover costs such as home health aides and other care not paid for by insurance. When projected out over the next two decades, it became clear that wisely managing her money would be essential.
Thankfully, she was eager to downsize and move closer to us, and she had no problem with me helping her create a budget (both of these things can be very difficult for aging parents). She was shocked by the high cost of, well … just about everything, including housing, utilities, and even groceries, and therefore gladly accepted some financial advice. She gratefully let me pay the bills, but kept control of her checkbook and reviewed monthly bank statements. Of course, we didn’t agree on everything. For instance, my mom had a soft spot for children and animals (like myself) and could not say no to those sad photos of hungry children and abused animals that arrived in the mail several times a week. She began writing checks to every organization that sent a request! We finally compromised by having her choose the two organizations that meant the most to her and making annual donations. For the rest of the year, she was instructed to throw all other requests in the trash, unopened. We had other minor disagreements along the way, but overall, when it came to the “money talk,” I emerged unscathed—but that’s not always the case.
A Sensitive Subject
You may have noticed that many of the documents on the checklist involve finances. For some caregivers, bringing up the subject of money can be more awkward than discussing end-of-life wishes. Let’s face it—money can be a sensitive topic. Many seniors are not comfortable discussing their finances with their adult children and vice versa, and even spouses can find it difficult to bring up. First off, the older generation never talked about money—it was considered a private issue. In addition, creating a will is a reminder of one’s mortality and brings up possible controversies over who gets what. It can also be seen as yet another loss of independence—giving someone access to your life’s savings can be scary! But these discussions are necessary and, once started, may actually reduce tensions and ease worries. Moreover, it’s vital that caregivers have a clear picture of the care recipient’s financial situation and review it regularly. This is the starting point for determining what type of care and living arrangements are affordable, and what, if any, financial assistance may be needed. Again, these conversations should happen before a long-term care situation arises. Here are some suggestions for talking to your parents or other loved ones about money:
Set the Right Tone—Anticipate that it could be an emotionally charged conversation, so keep the focus on the care recipient’s needs (“quality of life” instead of dollar amounts). Emphasize your concern for his or her well-being. As caregiver, you want to make sure he or she has enough resources to provide adequate care and cover unforeseen circumstances.
Explain Why Proper Planning Will Help your loved one, as well as the family. For instance, without a will, some assets could be taxed in unexpected ways, tied up in probate court, or taken from the family. His or her wishes may not be able to be carried out without legal documentation.
Keep Things Nonconfrontational—It should never seem like the purpose of the discussion is to find out if you will get your share! Avoid statements such as “You should…” Let him or her maintain control—the goal is to protect what your loved one has accumulated and use it wisely—not to take over.
Look for Appropriate Openings if you’re having trouble getting the conversation started. Appropriate occasions might be tax time (if you’re helping to file a loved one’s taxes or working on your own), when paying bills, or after an annual meeting with a financial advisor, for instance.
Arrange a Family Meeting to Discuss the Situation if other siblings are involved, but do not gang up on a parent. Designate one person to initiate the conversation.
Involve a Financial Advisor to be a liaison between parties if necessary.
Use Other People’s Experiences as a Conversation Starter—E.g., “Did you hear about …? His kids were left with a huge financial/legal mess. We should try to avoid that situation.”
Do Some One-Stop Shopping—If you’ve consulted an attorney about discussing end-of-life/medical wishes, it may also be the time to create a will or living trust and appoint a financial power of attorney to handle day-to-day finances. This is often a family member, but it could be an attorney or bank officer.
Contact the Area Office on Aging if you are finding it impossible to initiate these discussions (typically found in every state, by county). These agencies have social workers on staff, as well as volunteers, who can help facilitate discussions and provide advice on when to establish financial control.
It’s important to not only do a financial assessment (current assets, income, expenses), but also estimate the costs of long-term care, including home care or assisted living facilities. This can be tricky because it involves making guesses about how long someone might live and what type of disabilities he or she might develop. While it’s impossible to predict the future, you can make educated projections by doing some research on the costs of care options and assessing current health conditions, as well as family history.
As with legal documents, financial information should be kept in a binder or electronic file for easy access, and all parties involved should have copies.
Similar to legal issues, when asked the majority of folks (75 percent) agree that it’s important to talk about retirement expenses, eldercare, and estate planning, but only 44 percent have had detailed discussions, according to a recent study by Fidelity Investments. In addition, nearly two-thirds of families disagree about the right time for such conversations. The National Endowment for Financial Education found that 70 percent of adults have difficulty talking to their families about who will make financial decisions on behalf of aging family members who have become unable to handle their money.
When to Step In
Sometimes it’s difficult for caregivers to determine when the care recipient needs help managing money. A loved one might be physically impaired but mentally sharp and, as mentioned, highly protective of his or her finances. There are some signs, however, that caregivers can watch for that may indicate it’s time to step in:
Forgetting to pay bills, paying late, or paying twice (If you are concerned, you can request a credit report.)
Making irrational purchases
Having problems calculating simple math problems/balancing checkbook
Donating unusually large amounts to charities
Becoming the victim of a scam
Being inexperienced with handling finances and then suddenly becoming responsible
Writing becomes illegible due to arthritis or other dexterity problems
When in doubt, caregivers can begin small by offering to help pay bills and balance the checkbook, which may be welcomed by someone who has not been responsible for finances. The next step might be assisting a loved one with creating a budget, which can alleviate some financial stress. However, it’s important to keep the care recipient informed and involved with financial decisions whenever possible. For instance, you may review monthly bank statements together or have him or her sit with you while you pay the bills. Obviously, for those caring for a loved one with dementia, Alzheimer’s, or other cognitive disorders, handling the finances is a must.
Seeking Guardianship
Perhaps the most difficult caregiver situation results when a loved one loses the ability to think clearly and make decisions on his or her own, whether from dementia, Alzheimer’s, or other illness/trauma. When the person for whom you are caring is no longer able to make rational decisions about health care, safety, finances, or other aspects of life, it may be necessary to seek guardianship. Guardianship is an option when the person does not already have a power of attorney in place (yet another reason to prepare these documents before a crisis). It may also become necessary when there is disagreement among family members about how to care for a person.
When it comes to both financial and healthcare planning, the most important thing to remember is that a person must be “of sound mind” when preparing legal documents. Once a person becomes incapacitated, it is too late to specify wishes. Therefore, the best time to have these conversations and create the necessary documentation is before a health crisis occurs. When these documents are not in place, a caregiver may have to seek legal guardianship (see “Seeking Guardianship”).
To become someone’s legal guardian, you must have the care recipient declared incompetent in a court of law, usually based on expert testimony and evidence that the person is no longer able to make rational decisions. If the person is found mentally incompetent, the court transfers the responsibility for managing living arrangements, medical decisions, and finances to a legally appointed guardian. In some cases, more than one guardian may be appointed. For example, one person may handle finances, while another takes care of medical decisions.
The process can be lengthy and costly, especially if family members disagree about the need for guardianship or who should be appointed as guardian. Once appointed, a guardian has a legal duty to act in the best interests of the individual (referred to as a “ward”), but in many cases this action can create irreparable damage to relationships. Because guardianship takes away a person’s legal rights, it should only be done when absolutely necessary to protect a loved one. Guardians are typically required to provide the court with regular reports and financial accounting.
The bottom line—many times being a caregiver involves not only caring for a person’s personal and health needs, but also means being someone’s financial guide, legal aid, and voice when they are not able to speak for themselves.
Care for the Caregiver
Avoid the Guilt Trip
When Henry’s wife, Ann, had a stroke, he took on the role of caregiver with love and compassion. With time, they developed a comfortable routine, and Henry, who was a planner by nature, felt he had all the bases covered. He even scheduled a weekly poker night with his friends to get out of the house. While Ann still needed help with certain tasks, she was doing well enough to be home on her own for a few hours. In fact, she had developed a habit of watching various home shopping channels and was often still in front of the television when Henry returned.
“I thought she found these programs comforting,” said Henry. “Sometimes she didn’t even seem to be watching—it was background noise while she read.”
But Ann was doing more than just watching. Packages began arriving at the house that Henry didn’t order—including expensive luggage, a blender, and a pair of high-end tennis rackets.
“Well, it was a little strange, since we’ve never even played tennis,” Henry chuckled. “Ann was ordering things that we didn’t need and couldn’t really afford. When I asked her why, she couldn’t explain. Sometimes she didn’t even remember placing the order.”
It had never occurred to Henry to remove his wife’s credit card from her purse. She wasn’t able to drive after the stroke, and he never thought about placing orders over the phone. Unfortunately, he had no choice but to take the card away and explain to his wife.
“Initially, she was very angry with me,” said Henry “She saw it as another step in losing her independence, and I was considered the ‘bad guy’ for a long time. I can’t tell you how awful that felt.”
Taking things away from loved ones, such as car keys, credit cards, and financial freedom, is very difficult for most caregivers. Even when you know steps such as these are necessary, your actions can feel punitive and seem hurtful. Those feelings of guilt can cause a great deal of stress. In fact, guilt is so common among caregivers, the term “caregiver guilt’ is a widely used and recognizable term (see chapter 8 for more on handling emotions).
In Henry’s case, he felt so guilty that he canceled his weekly outings, along with his morning walks. However, after a few weeks, he began feeling irritable and cranky, and so was his wife. When he confided in Ann’s physician, he told Henry to lose the guilt and reclaim his personal time for both their sakes. Instead of focusing on what was being taken away, he suggested that Henry “give something back.”
“Our physician suggested that part of the problem for Ann may be boredom and not feeling useful,” said Henry. “So I taught Ann how to play some simple computer games, which she enjoyed, and also helped with her cognitive functions.”
Henry also identified some easy tasks for Ann to do around the house, which made her feel like she was contributing to their life together. Finally, he asked a friend to come over and keep Ann company one night a week.
“When Ann first had the stroke, some of our friends offered to help,” recalled Henry. “But, I didn’t want to impose and never really thought to take them up on their offers. When I finally called one of Ann’s friends, she was happy to help out and wondered why I hadn’t asked sooner. It turns out she was feeling helpless and looking for a way to reconnect.”
It would have been easy to let the guilt get the better of him and just stay home, but Henry realized he needed those nights out to interact with friends and relax. It made him a better caregiver and allowed his wife to have a break from him, too!
