Welcome to the

   CareGiving Navigator


2019 Long Island Edition

© Roel Resources



   

Welcome to the

  CareGiving Navigator

2019 Long Island Edition

© Roel Resources

   

How to Plan, What to Do, and Where to Turn When Caring for your Aging Parents—and Yourself

“There are only four kinds of people in the world:

Those who have been caregivers;

those who currently are caregivers;

those who will be caregivers;

and those who will need caregivers.”

—Rosalyn Carter, former First Lady of the United States and
President of the Board of Trustees, Rosalyn Carter Institute for Caregiving

Dear Friends,

Caring for your aging parent is one of the most loving gifts you can give—and perhaps one of the most difficult jobs you’ll ever have. I know. From first-hand experience. 
I’m one of hundreds of thousands of Long Islanders in recent years who have taken on the tasks of caring or finding care for an older relative or friend. My three brothers and I took care of our mom, a brave and remarkable woman who successfully aged in place before eventually succumbing to Alzheimer’s. We went through practically every phase of caregiving: helping our mother stay safe and independent for as long as possible; then managing the complex process of long-term care legal and financial planning, overseeing a wide variety of services as Mom became increasingly frail, from choosing home care aides and adult day care programs, to overseeing doctors’ visits, wound care and sub-acute rehabilitation services, physical therapy and other in-home health-care providers; and finally, engaging hospice care. 
I’m one of hundreds of thousands of Long Islanders in recent years who have taken on the tasks of caring or finding care for an older relative or friend. My three brothers and I took care of our mom, a brave and remarkable woman who successfully aged in place before eventually succumbing to Alzheimer’s. We went through practically every phase of caregiving: helping our mother stay safe and independent for as long as possible; then managing the complex process of long-term care legal and financial planning, overseeing a wide variety of services as Mom became increasingly frail, from choosing home care aides and adult day care programs, to overseeing doctors’ visits, wound care and sub-acute rehabilitation services, physical therapy and other in-home health-care providers; and finally, engaging hospice care. 
Every family’s caregiving journey is different—but practically everyone can tell you their saga of challenges and crises. Many adult children are wedged in the “sandwich generation”—holding down jobs while trying to manage the care of both elderly parents and their own children. They’ve told me that what they need most is a practical guide about what reliable resources are available to help them, especially during times of extreme stress and uncertainty. They need a strategic “roadmap” to help them navigate through the maze of care options.

This guide is intended to do just that—to empower you, the family member, in deciding how best to care for your loved ones. Long Islanders deserve up-to-date information about resources across the nation, but especially those close to home. This guide is organized in five parts to help you focus on the most critical issues at each stage of caregiving:

1. Preparing for care. Planning family conversations, reviewing benefits, insurance coverage, financial resources and legal documents.

2. Supporting those who are largely independent. Preparing the home for successful “aging in place,” including home modifications for safety and comfort.

3. Providing care for those able to live at home, with assistance. Explaining options, government benefits, levels of service, assistive devices and case management.

4. Providing care for outside the home. Making long-term care choices when it’s no longer feasible for loved ones to remain at home.

5. Caring for the caregiver.  How to take care of yourself, alleviate stress and find support groups and programs.

Supporting family caregiving is part of my broader work, promoting intergenerational activities that help older and younger generations learn from each other and honor what each has to offer. We all need to be engaged in caregiving. Indeed, when we discover better ways to provide care for our aging parents and friends, we are also forging new paths of care for our future selves. 
Sincerely,
Ron Roel
President, Roel Resources​

PART I

PREPARING A PLAN

PART I

PREPARING A PLAN

The Family Conversation #I:    Planning Across the Generations

​Providing good care not only requires advanced planning, but thoughtful, ongoing conversations between adult children and their loved ones.


These are not easy conversations. They cover complex subjects, ranging from financial and health issues to estate planning issues—topics that parents may be reluctant to discuss. And they’re emotional issues, forcing us to acknowledge that while we’d all like to see our parents as robust and independent persons, the odds are they will need our care at some point.


Too often, families avoid such conversations until a crisis arises—a fall, an accident or serious health diagnosis. Making big decisions in the midst of emotionally trying circumstances, however, is never a good strategy. No matter the challenges or reluctance, it’s better to talk when your parents are healthy, sharing information and weighing options and preferences before a crisis happens.


So how do you start?


Setting the Scene


Everyone’s situation is different. You could decide to bring up these topics informally or in a formal, planned meeting, whichever seems appropriate.

  • Set aside time to meet during holiday visits or other family occasions, especially if some adult siblings live far away. There may be an opportunity to start the conversation casually by discussing someone else’s situation—a person the family knows who may be having health problems or even some celebrity in the news who is aging. You might tell your loved ones that you’re thinking about your own retirement and ask them, “How have you planned ahead, and do you feel prepared?”
  • If circumstances don’t offer a natural opening, tactfully bring up the topic. Suggest that while no one likes to think about getting older and needing help, that’s not realistic, so perhaps the family could begin exploring potential plans as way of ensuring that your parents get help when they need it—in ways they want to be helped. Ask your parents, “Can we look at this together?” Reassure them that having the conversation does not mean that changes are imminent, or maybe ever. 
  • Frame the conversation in a supportive way, reminding your parents that this is about their wishes. Like many elders, your loved ones may be reluctant to have “the conversation” until a catastrophe occurs. No one wants to give up their independence and many will fight tooth and nail to protect it — even if it means personal discomfort. You can’t force your parents to discuss these things. As life’s roles shift, they’re still our parents. No matter how “adult” we are, we’ll always be “the kids” to them.
  • Consider enlisting the help of a trusted outsider, like a financial advisor, doctor or clergyperson. Your parents may feel more comfortable broaching these topics with them, rather than their children. That’s OK—you just want to begin the conversation with someone your parents will listen to, creating a bridge to their children.


Despite the challenges, families that work together usually find that it relieves anxiety and enhances their relationships. It’s hard to create a good caregiving plan for your parents without building a team, especially with the people closest to them.  If family members take the time to explore things early, they’ll likely avoid facing serious conflicts later. It can’t be too soon, but it can be too late if a health crisis occurs. The longer you wait, the fewer options you have, and you may find yourselves forced to make decisions without any idea what your loved ones may have wanted.


Having the Conversation


How you conduct potential caregiving conversations will depend on your family dynamics, of course, but here is a list of suggested tips from geriatric care experts:


  • Let your parents start the conversation—and let them talk with each other.
  • Don’t interrupt. Respect their time and thought process.
  • Don’t have this discussion when family members are tired or emotional.
  • Avoid drifting into old hurts; stick to specific issues at hand.
  • Ask questions and listen. Be open to your parents’ response—you might not know them as well as you think.
  • Don’t make decisions ahead of time; allow the conversation to go where it will.


Once your parents have had a chance to express their thoughts, you and your siblings can share your views. Be honest about your own concerns. Are you worried that your parents aren’t safe? That they don’t have enough access to friends and social activities?  If one of your parents is already caring for the other, are the caregiving duties too much? And if your family assumes that the adult children will be the “default plan” when it comes to parental support, what impact will that responsibility have on the caregivers’ jobs, children and other responsibilities?


Be methodical in your approach, but don’t worry about not trying to cover everything at once.  Again, stay respectful. Never give the impression that you want to “take over.”



The Sibling Syndrome


If you’re lucky, all your siblings will agree on the planning process. But that’s often not the case. When siblings fight, it can end up a war, and in some cases, sadly, they end up never speaking to each other again once mom and dad are gone.


To help families avoid such situations, siblings and parents need to talk openly about family history and dynamics, and how they might affect caregiving plans. Old roles and patterns from childhood may re-surface, creating contentious meetings and awkward choices. Don’t expect a sibling to see your parents as you do. You’re affected by how each of you related to them growing up, yet those past roles should not continue to define you today—especially in the context of your parents’ caregiving needs. To help navigate emotional disagreements, therapists often recommend that siblings try a simple semantic technique: Use “I feel” sentences, speaking from your own experience and perspective, rather than “you” sentences that may make your brothers or sisters defensive or angry.


While a care plan should be a shared responsibility among siblings, realistically, one sibling frequently ends up as the primary caregiver. This role should not default to the person who lives closest, but delegated to the one who is most skilled, willing and emotionally prepared. Siblings should evaluate what each of them could reasonably and honestly do. And if the burdens are disproportionate, talk about how each can contribute—perhaps with respite care, assistance in navigating entitlement benefits, or managing financial assets and estate planning.


The primary caregiver, in turn, must:

  • Respect the opinions of all those involved in the plan.
  • Share all information, keeping everyone up to date on their parents’ condition.
  • And keep everyone abreast of care issues through regular communications, such as email, texts, conference calls, and in-person meetings.


These conversations may not always be pleasant, but if you take the time to address issues early, you’ll likely avoid more serious conflicts later—and hopefully keep your family intact.


Making a Plan


While there is no one “right” caregiving plan, there are common issues.

  • First, the plan should center on your loved ones’ wishes. Don’t take decisions out of their hands.  As long as they are able to do so, let them steer their own ship, choosing how they’d like to live their lives and who they want to handle their finances, health and personal affairs.
  • Put the care plan in writing, especially if any siblings are missing from these conversations. It may be helpful to chart out your parents’ goals and requirements; the steps required to provide them, and the people assigned to each task. While family members are likely sources of support, don’t overlook friends, neighbors, and organizational affiliations as potential resources.
  • Set up a communications system that keeps everyone in the loop. And remember, the plan is just a draft. As your loved one’s circumstances change, plans will evolve to meet their immediate as well as long-term needs. You may not decide on a number of key issues, but at least you’ll know what your parents’ priorities are and will have reached some common ground.
  • Consider bringing in a third-party expert to help smooth communication if these conversations prove difficult. Mediators, family therapists, elder law attorneys, geriatric care managers and financial advisers—all these professionals can help family members get on the same page. They may charge for their services, but it is usually money well spent—an investment in the well-being of the entire family.


Even if the conversation does not go smoothly, you will have accomplished something: The seed has been planted. Your parents may not respond much initially, insisting, “We’re fine, thanks, we don’t need help.”  But you’ve probably gotten them thinking and they may even restart the conversation themselves as they face new experiences. Consider this the first of many conversations. The whole point of talking early in the game is to create a plan, so you don’t have to face an emergency without the information you need.


Helpful resources to help jump-start these early family conversations:

Several websites that offer useful information for caregivers nationwide

A short list of suggested topics to help keep you focused on the family’s plan

ASSEMBLING VITAL DOCUMENTS


One of the most important tasks for families is to make sure that important information relating to their elderly loved ones is accessible. Gathering and organizing may take more than a day, but working together will make it easier, and your entire family will feel more secure when the papers are in order. Try breaking the task into a few steps:


1. Identify where your parents keep their important papers. It may be at home, in a file cabinet or safe, or in a safety deposit box, or with their attorney—or all those places. It doesn’t do any good to have your parents records in order if no one knows where to find them.


2. Sit down as a family to review all relevant documents and accounts. Identify missing links—information gaps you need to fill in to help your loved ones plan for retirement, as well data or contacts you might need in a medical emergency. Make sure designees and beneficiaries are up to date for all policies and accounts.


3. Come up with a checklist of all the documents. Note which ones you need to keep together in a safe place, such as a secure file cabinet, so you can locate them quickly when needed.  Keep original documents, such as passports and birth certificates, in a fire-proof safe.


4.  Make sure you know who is authorized to speak to company or government agency representatives, in case your loved ones can’t speak for themselves. Make copies of key documents for the person(s) designated as Power of Attorney and Health Care Proxy. 


5. Consider electronically scanning files onto a memory stick that can be stored at another location.  Remind your parents to update their documents every three years.


6. Don’t forget to keep a record of your parents’ “virtual estate.”

These records may include digital photos, social media, online records, financial and other accounts, including user names and passwords.


7. Make a “contacts” file with the names of all key people in your parents’ lives. Make it easy for your family members to locate these important people—close relatives and friends, primary physician, minister/priest/rabbi, attorney, accountant, tax preparer, and banker. 

Here is a suggested list of vital documents and information 

ADDRESSING ELDER LAW NEEDS



Consulting an Elder Law Attorney


Assuring the future care of an aging family member usually involves making important decisions about legal, financial, health care and estate planning options.  Not everyone may need an elder care lawyer, but these professionals can help multiple generations of families plan how their health care and financial wishes will be carried out, including the execution of key legal documents such as health care proxies, living wills and powers of attorney. An attorney also can assist in planning for possible long-term care needs, including Medicaid options, as well as review wills, create trusts and design estate plans to preserve assets.

Family caregivers should be aware that if their parents hire an elder law attorney, the attorney represents the interests of senior clients —not their adult children. The attorney’s goal is to make sure that good care is provided and see that the senior’s assets are preserved as much as possible, and not necessarily for the sake of the children’s inheritance.

So how do you find a local elder law attorney?  As with the hiring of other professionals, like accountants, start with referrals from people you trust, such as close friends, business associates, financial advisers and health care professionals.  Also consider these sources:


National Academy of Elder Law Attorneys (www.naela.org). Members of this association specialize in dealing with legal issues affecting seniors and people with disabilities. The website offers a “Find an Attorney” link, which enables you to locate elder law attorneys within a certain distance of your ZIP code. The site also has tips for interviewing and selecting an attorney.

  • National Legal Resource Center (https://nlrc.acl.gov). Created by the U.S. Department of Health and Human Services’ Administration on Aging, the center is a collaborative project involving several nonprofit organizations known for research, training and advocacy in legal and aging services. The site has listings of select legal service providers by state.

Once you’ve assembled a short list of attorneys, check each candidate’s background (most likely individual credentials will be listed on the firm’s website) and request a brief interview. Confirm their background, experience and credentials:

How long has the attorney been in practice?

Is the attorney a member of the National Academy of Elder Law Attorneys?

Is the attorney a member of the elder law committee of the state or local bar associations

Is the attorney a member of organizations such as the Alzheimer’s Association or the American Parkinson Disease Association?

Then, ask a series of additional questions:


 
  • What percentage of the attorney’s practice is involved with elder law?
  • Does the attorney speak or write frequently on the topic of elder law?
  • What is the fee for the first consultation, and what information or documentation should you bring to that meeting?
  • How are the attorney’s fees assessed for additional consultations, as well as the execution of wills, trusts and other legal documents?
  • Can the attorney refer you to a handful of his or her clients?

An experienced elder law attorney can be a valuable asset for seniors and their caregivers, helping to explain complex regulations, identify unforeseen alternatives and potential family conflicts—before they become crises.


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