"I Will NOT Put My Parent(s) in 'a Facility'!..."
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$$ Tips from the Mature Market Institute, Met Life's aging and retirement unit
According to MetLife, working Americans who care for an aging parent lose an estimated $3 trillion in lifetime wages, with average losses of $324,044 for women and $283,716 for men. As a result, MMI researchers provided the following 10 financial tips for caregivers:
- Think very carefully before quitting a job to help a parent - The time gained by leaving your job may be offset by not only your loss of current income but also damage to your retirement savings. If you leave work, what are the odds of finding work in the future? Would your job skills still be attractive to prospective employers if you didn't work for several years?
- By leaving your job, you might lose other helpful benefits - In addition to your own health insurance, are there employee disability, life insurance, and long-term care insurance policies that would be very costly to replace? Check out your employer's flex-time and family leave policies. Perhaps they would allow you to keep your job.
- Make a caregiving budget - Before making a lifestyle decision with financial consequences, put together a comprehensive assessment of what you are spending on caregiving. Also, make a companion list of your parent's resources and how they might be better used to support caregiving activities.
- Explore free or low-cost public benefits - Several websites can provide help in identifying and getting help with caregiving tasks;
- the government's eldercare locator
- the National Council on Aging's benefits checklist service, and the
- the National Association of Area Agencies on Aging has extensive information on
caregiving help, plus an online locator to a local office in your area. - Learn about Medicare and Medicaid - Think Medicare covers nursing-home stays? It does not, Medicaid does, but only people who have exhausted most of their assets qualify for Medicaid-paid nursing home benefits. What kind of Medicare coverage do your parent have? Do they also have a Medigap or Medicare Advantage policy? A drug plan? What are the co-pays, out-of-pocket limits, and other financial aspects of their insurance? Check out MetLife's own primer on Medicare and Medicaid.
- Understand the costs of keeping your parent in their home - Most people want to grow older in their own home, surrounded by possessions and memories. How much will such "aging in place" cost, and can you find help? MetLife has an Aging in Place Workbook. For a detailed look at in-home and institutional care costs, look at the 2011 Genworth Cost of Care study.
- Consider professional help - If your parent's needs are extensive and challenging, consider hiring a geriatric-care manager who can put together a care plan for you, and can often identify community resources to reduce your own expenses and time. The National Association of Professional Geriatric Care Managers can explain professional standards and services, and also has a locator to help you find a professional nearby.
- Watch out for financial scams - Financial abuse of the elderly has, sadly, become a growth industry during the nation's tough economic times. Make sure your parents are protected from making hasty, poor, and expensive financial decisions.
- Have "the conversation" - Make sure you understand what your parent want should you wind up with the legal power and responsibility to make decisions for them. This conversation may be uncomfortable for both of you, but it is essential. If you don't know the ins and outs of a power of attorney, a living will, or a healthcare proxy—and few people do—find an eldercare expert or attorney to help.
- Make your own retirement plan - How are you fixed for retirement? And how might your financial future be affected by taking care of a parent? Take steps you to deal with these implications now.
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Tips From This Expert on Medical Care for An Elder Loved One
Here is what we can – no must - do to make sure our elders get the loving and quality care they deserve from their medical practitioners and facilities. And, of course, the advice I’m about to give around their care, holds true for us and our own health care as well.
One of our generational characteristics is that we have no problem taking control of situations; in fact, we get cranky when we lose control, or perceive we’re losing control, of the things that impact our lives. Well, use this characteristic well when it comes to ensuring that the elders in your life are cared for well. Don’t park it at the doctor’s office door, or before entering the facility in which your parents live.
A while back ABC Nightly News did a piece on a FL woman – a Boomer - whose 86 year old father was being inappropriately given antipsychotic medications for his dementia by the Assisted Living Facility (ALF) in which he was living, even though research clearly shows that not only does antipsychotic medication not work to mitigate dementia in the elderly, it actually does them harm. After being in the facility for only 2 months, and after watching her father quickly descend into despondency to the point of becoming unresponsive, he died. She knew something “wasn’t right” and now in retrospect “wished she had looked into his care further, asking them what medications they were giving him, etc.” But she didn’t. She took a hands-off approach with the facility and the doctors. It cost her father, who she clearly loved dearly, his life. Oh, and by the way, Medicare paid for all those meds, even though they are aware that such treatments are medically unsound….
From my own experiences, as well as those of the many Boomers with whom I've spoken on this issue, medical and non-medical personnel alike, here is what I do myself, and urge you to do as well:
Be a full partner in care, not a passive consumer:
Conduct yourself like a professional healthcare coordinator who is responsible for a precise understanding of all aspects of the patient’s care (starting with a crash course on the diagnosed conditions and their treatments – you can get lots of factual information online) – do not blindly accept information or opinions of medical professionals who see hundreds of patients a week and spend very little time with each of them; And if you’re thinking “I don’t have time to do that” –in fact, you do, because your already spending that time reacting to crises created by the ineffectual care being given to your loved one – proactively staying ahead of the curve is a much better use of that time…
Hold your healthcare professionals accountable for quality care:
Do not accept non-answers, condescension, vague answers, answers in medical jargon, or the attempt made by so many doctors to treat your questions as silly or unnecessary – you would not accept this of any other service provider, and a doctor is no different;
Seek second or even third opinions:
In fact, seek out the leaders in the specialty associated with your loved one’s diagnosed condition, wherever those health professionals are – do not limit yourself to your geographical area or even your State. The doctor who saved my father’s life numerous times, when all the doctors here in Tampa had sent him home to die, is located in NYC. Also remember, this is a business, so do not accept guilt trips, hurt feelings, or any other unprofessional reaction on the part of your doctor – if that happens, find another doctor.
As for facilities, if and when the time comes that you have no choice but to place your parent in one, in FL where my mother and I live, oversight of Nursing Homes and Assisted Living Facilities is lax at best, a bad joke at worst. Even if it’s better in your State, don’t rely on others, whether government entities or facility/medical staff, to “do the right thing” by your elder, or yourself. That’s up to you…and you alone.
One of our generational characteristics is that we have no problem taking control of situations; in fact, we get cranky when we lose control, or perceive we’re losing control, of the things that impact our lives. Well, use this characteristic well when it comes to ensuring that the elders in your life are cared for well. Don’t park it at the doctor’s office door, or before entering the facility in which your parents live.
A while back ABC Nightly News did a piece on a FL woman – a Boomer - whose 86 year old father was being inappropriately given antipsychotic medications for his dementia by the Assisted Living Facility (ALF) in which he was living, even though research clearly shows that not only does antipsychotic medication not work to mitigate dementia in the elderly, it actually does them harm. After being in the facility for only 2 months, and after watching her father quickly descend into despondency to the point of becoming unresponsive, he died. She knew something “wasn’t right” and now in retrospect “wished she had looked into his care further, asking them what medications they were giving him, etc.” But she didn’t. She took a hands-off approach with the facility and the doctors. It cost her father, who she clearly loved dearly, his life. Oh, and by the way, Medicare paid for all those meds, even though they are aware that such treatments are medically unsound….
From my own experiences, as well as those of the many Boomers with whom I've spoken on this issue, medical and non-medical personnel alike, here is what I do myself, and urge you to do as well:
Be a full partner in care, not a passive consumer:
Conduct yourself like a professional healthcare coordinator who is responsible for a precise understanding of all aspects of the patient’s care (starting with a crash course on the diagnosed conditions and their treatments – you can get lots of factual information online) – do not blindly accept information or opinions of medical professionals who see hundreds of patients a week and spend very little time with each of them; And if you’re thinking “I don’t have time to do that” –in fact, you do, because your already spending that time reacting to crises created by the ineffectual care being given to your loved one – proactively staying ahead of the curve is a much better use of that time…
Hold your healthcare professionals accountable for quality care:
Do not accept non-answers, condescension, vague answers, answers in medical jargon, or the attempt made by so many doctors to treat your questions as silly or unnecessary – you would not accept this of any other service provider, and a doctor is no different;
Seek second or even third opinions:
In fact, seek out the leaders in the specialty associated with your loved one’s diagnosed condition, wherever those health professionals are – do not limit yourself to your geographical area or even your State. The doctor who saved my father’s life numerous times, when all the doctors here in Tampa had sent him home to die, is located in NYC. Also remember, this is a business, so do not accept guilt trips, hurt feelings, or any other unprofessional reaction on the part of your doctor – if that happens, find another doctor.
As for facilities, if and when the time comes that you have no choice but to place your parent in one, in FL where my mother and I live, oversight of Nursing Homes and Assisted Living Facilities is lax at best, a bad joke at worst. Even if it’s better in your State, don’t rely on others, whether government entities or facility/medical staff, to “do the right thing” by your elder, or yourself. That’s up to you…and you alone.
Finally, a few tips/resources gathered from a variety of elder care sites/professionals, including those we've had on the show, to help you help your elder loved one remain at home until they leave the planet....
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We'll start with a pretty comprehensive list of in-home medical and non-medical services available:
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Now, onto some practical how-to's for caring for your elder loved-one with greater ease:
- Make sure you have their date of birth and Social Security number; you'll need this information to access many services.
- Collect information about their medical providers and health insurance, including:
- Names, phone numbers and addresses of their doctors, dentist and pharmacy (be sure to include complete details about any arrangements they've made for discount prescriptions)
- Copies of health insurance policies and the front and back of all insurance cards; if they're 65 or older, you will need a copy of his/her Medicare card (Medicare has prepared a helpful online booklet; it includes a summary of Medicare's benefits, rights and protections, answers to the most frequently asked questions about Medicare, and information about the prescription drug coverage benefit)
- A list of all medications (this includes not just prescription drugs, but all over-the-counter drugs such as aspirin, antacids, herbal remedies, nutritional supplements, multi-vitamins, etc.), dosage amounts and instructions (time of day, with food or between meals, etc.). Take this list with you to all of their medical appointments, and make sure the doctors not only note them, but ask for updates each time you visit.
- Date and results of recent medical tests, including exams, xrays, CT scans and MRIs.
- Get an intake form from a doctor's office, make a copy for yourself before completing it for them (I have them fax or email the form so I have a copy), complete it for your records, then take this with you to all their medical appointments - makes life sooo much easier.
- A very effective online tool for gathering, recording, storing and updating all sorts of information is available from ElderIssues.com. Their LifeLedger Online Service is very helpful to:
- collaborate with siblings, and provide complete information to medical
personnel in case of emergency
- build and maintain emergency contact numbers, activity reminders,
tasks, documents and other useful information.
- Learn as much as possible about their medical condition(s). Do your own research on these conditions so you become fully informed; a great place to start is organizations and associations developed around those conditions (such as the Alzheimers Association and the American Heart Association). Study the symptoms and progression of the conditions so you can both anticipate what might come next, and ask the most pertinent questions of the docs. Also, find out about available treatments, experimental research and clinical trials, and as mentioned above, the finest doctors in the country for that condition in case you need them when your local doctors can do no more.
- Try to get as many people as possible involved from the beginning. Call a family meeting; early input from them will facilitate a better line of communication and easier decision-making down the line. If disagreements on how to proceed ensue, access a professional counselor to help you sort it out - do not allow such disagreements to fester....that's a recipe for unnecessary conflict. Designate a person to be responsible for each task based on what's possible for them (distance, capacity, etc.) - but ultimately, don't let anyone off the hook.
- Find out if your love one has the proper legal tools and documents in place. Make sure someone has been appointed to take care of business and make health care decisions in case of temporary or permanent disability. Learn their wishes for end-of-life care. If necessary, consult an attorney specializing in elder law. These are some of the documents you want to make sure they have in place if they haven't already done so:
- Will
- Durable power of attorney for finance
- Durable power of attorney for health care
- Living will
(FYI: Living Wills and Powers of Attorney for Health Care are often referred to as Advance Directives for Health Care. For more information, HelpWithElders.com offers an excellent audio podcast on the subject in general; they also offer another useful podcast, What is a Power of Attorney?) - Investigate your loved one's health insurance matters, including:
- the kind of coverage they have
- eligibility for Medicare or Medicaid if they're not already enrolled, and if
they are, that's its in order
- do they have a long term care insurance policy, and if so, what does it
cover
- do they have coverage through a private pension plan or retirement
package. - Explore other available financial resources:
- all assets
- real estate owned other than the primary residence, and how much
everything is worth
- savings accounts, IRAs, stocks and bonds, other bank accounts,
annuities and other investments
- monthly income from Social Security, other government programs,
private pension plans, CDs - Take some time to familiarize yourself with your community's resources, like eldercare services, senior centers, and adult day services in the area (use the list above), get referrals to, and information on, all that are available to you, including entrance/usage criteria. To determine the right one for your needs when you have choices, start by asking for recommendation from colleagues, friends, and your parents' friends who have used such services. If you know no one in this category, a google search will bring up lists of local agencies; I recommend Aging Wisely as a good place to start you search.
- Even if this is a temporary situation that you know will improve, start gathering information about assisted living facilities and other long-term care options. If/When the time comes, you will want to have for them and yourself a range of options from which to choose.
- Recognize that loss of sight, hearing loss, memory loss, confusion, incontinence and depression are not normal aspects of aging. In many, if not most cases, these are treatable conditions. Note that some could very likely be the result of prescription drugs interactions or drug side effects. Failure to identify these conditions as being treatable could place elderly patients at risk of unnecessary decline.
- Consider hiring a care manager. These professionals are trained to quickly assess the overall situation, make recommendations about needed services and, if necessary, coordinate community resources and hire and manage paid caregivers. Start with the National Association of Professional Geriatric Care Managers; their website includes a locator to find care managers near your loved one.
- Talk to friends, neighbors, acquaintances – anyone with experience in caring for an elder. In reaching out you will assemble a wealth of information about how to proceed and what to expect down the line. You will learn that others have been there before and found their way through.
- Talk things out with the elder for whom you're caring, allowing them as much independence as safely possible. Remember that the caregiver's role is to help them maintain as much control over their lives as feasible, not take it away; this includes allowing them to make their own decisions unless the decisions become harmful to them. The more you can consult with them, consider their desires, and truly respect them, the smoother the transition in your relationship will be.
- Make sure that everyone on the caregiving team – whether family members, friends or professionals – has the information they need to perform their responsibilities. Distribute that list of emergency numbers, family contact numbers and other items. Family members should know how to locate legal, financial and medical documents like durable powers of attorney, living wills, investment account statements and health insurance policies in case of emergency. Also make sure you and others in their inner circle have keys to the residence in case of emergency.
- Finally, remember to pause from time to time to relax and take a break. It can be very hard to do, but it will help sustain your spirits and prevent you from sinking under the weight of care-giving. Acknowledge your own feelings of loss, anger, shock and confusion. Even when prepared for this moment coming, you are likely to find unsettling emotions bubbling through the surface.
Allow yourself time to experience them.
Take a long bath. Go to a movie. Take care of yourself, too.
From Kathleen Carter & Educator Labs (educatorlabs.org)
Aging at Home: Common Problems and Solutions
How Seniors are Designing Social Support Networks
The Ultimate Guide to Home Accommodations for Persons with Disabilities
The Benefits of Emotional Support Animals
Guide to Addiction Prevention for Seniors
Finding a Family: Discovering Your Queer Community When You’re 65
Dental Care Tips for Caregivers
Recognizing and Treating Depression: A Guide for the Elderly & Their Caregivers
How Seniors are Designing Social Support Networks
The Ultimate Guide to Home Accommodations for Persons with Disabilities
The Benefits of Emotional Support Animals
Guide to Addiction Prevention for Seniors
Finding a Family: Discovering Your Queer Community When You’re 65
Dental Care Tips for Caregivers
Recognizing and Treating Depression: A Guide for the Elderly & Their Caregivers
