As aging parents creep past retirement age and into their 70s and 80s, adult children are faced with the same conundrum: how can they enable their mothers and fathers to stay in their homes longer, rather than send their loved one to a retirement home or similar facility?
According to the AARP, 30 million households provide care for an adult over the age of 50, and that number is expected to double by 2040. Failing to plan ahead now could cost tens or even hundreds of thousands of dollars, not to mention precious time, comfort, and dignity. Take the following tips to heart so you can create a caregiving strategy for your loved ones that will keep them living how they want for as long as possible.
No one wants to have the care discussion with their parents, many of whom want to maintain their independence. Nonetheless, in order to avoid costly, embarrassing, and potentially fatal consequences, this necessary conversation must begin with honesty and compassion.
Effective caregiving plans include family members, close family friends, and other loved ones; they also designate a single “team leader” or point person who facilitates discussions and keeps communication forthcoming. Remember not to make any decision unilaterally. Apart from creating negative emotions, legal consequences may follow if the parent disputes the child’s action.
You may want to consider hiring someone to help with this planning. A geriatric care manager can assist your family with this.
Make a List, Check It Twice
Create checklists for personal information, home maintenance, health, finances, and transportation. These checklists should include all essential information, any necessary phone numbers, the location of documents or other important paperwork, and a division of labor. Allow multiple people — including your parents themselves — to divvy responsibilities where appropriate to ensure that no one person feels the full burden of caregiving.
On the topic of lists, good protocol calls for creating what’s known as a Vial of L.I.F.E. (Lifesaving Information for Emergencies) checklist. Be sure it includes hospital preferences, allergies, medical conditions, insurance information, and emergency contacts. This list can prove essential information in critical situations if the parent cannot respond or otherwise provide the necessary details.
There are organizations available to handle questions about elder care, such as the AARP, or your local government. The Eldercare Locator can provide a variety of services in your neighborhood, and the official Medicare website will inform on free or reduced-cost healthcare offerings.
Should you choose to hire an in-home care provider, there are additional things you want to consider to make sure your loved one is best cared for.
The Power Is Yours
One of the most important and immediate tasks to complete when planning your loved one’s transition plan is designating a power of attorney and arranging for decision-making processes to occur in the event of incapacity.
The documents that must be created are the Durable Power of Attorney for Health Care — which you probably know as a “living will” — as well as a Physician’s Order for Life-Sustaining Treatment (POLST), the Durable Power of Attorney for Asset Management (or Finance), and the will itself.
- The powers of attorney provide for a trusted person like a child to make legal and health care decisions for a loved one who is physically unable.
- The POLST replaces a Do Not Resuscitate directive and allows individuals to decide whether or not emergency responders and other medical professionals should provide certain treatments.
- A will establishes how one’s assets and estate will be distributed. It’s quite possible your loved one already has a will in place.
Many families will also want to create a living trust, which places the control of an estate’s assets with a legal entity. Both of these allow for assets to bypass legal probate, which can be a lengthy and stressful process.
Make Use of Technology
Technology has made it easier for families to anticipate and ameliorate concerns for elderly family members. Try utilizing these techniques to provide convenient care for your loved one.
1. Home Delivery
Amazon Prime or similar home delivery services are fantastic ways to ensure that household goods never run out. Paper products, incontinence products, hygiene items and toiletries, cleaning supplies, and even some dry goods can be delivered right to the doorstep in just a day or two. A “wish list” can be created to provide a handy source for the necessary items, and family members can order off the list and pay directly, circumventing any complicating factors.
2. A Pre-Paid and Pre-Programmed Phone
Gone are the days of leafing through books filled with chicken scratch handwriting, trying to find the right phone number. Buy an inexpensive phone and pre-program essential phone numbers with simple, easy-to-understand labels. For example, emergency services, doctors, family members, and neighbors can be programmed, saving valuable time in a critical situation. Keep it simple so you can teach your loved one how to operate the device.
3. Keep Pills on Lockdown
Many senior citizens take multiple pills a day, and forgetting dosages or mixing medicines can be a fatal hazard to the elderly. Even though most pill containers are labeled, aging parents become easily confused; these containers are also unsafe for visiting children. Buying an automatic, lockable pill dispenser means medicines are tamper-proof and only accessible when needed. Many of these also alert the parent (or caregiver) when pills are running low to make re-ordering easier.
4. Keep Information Managed and Centralized
Google Drive has an assortment of invaluable, accessible, and free tools to organize, manage, and share important materials within a family. Living wills, power of attorney documents, medication lists, pharmacy prescriptions, home security system passwords, and other important lists and information can be accessed by multiple family members. Google has downloadable apps that allow this data to be retrieved on mobile phones, convenient for trips to the pharmacy, doctor, or attorney.
A caregiver is essential for handling much of the mail delivered to the home of an elderly family member. The generation going through these life changes often relies on physical mail, instead of email, but may find it increasingly difficult to organize all they receive. Designate someone to sort important bills and other financially important items from the catalogs, magazines, and junk mail received on a daily basis. Another option is to have the important mail, such as information from banks and brokerage accounts, forwarded to the physical address of a trusted family member or power of attorney.
One out of three people over the age of 65 will experience a fall, which is the leading cause of serious injury among seniors. Purchase a monitoring system that has a medical alert button can be invaluable. It will alert emergency responders in the event of a major fall or other injury. Some come with buttons that can be worn on the body for easy accessibility, and others offer two-way communication to keep the fallen person on the line while medical assistance arrives. Consider also purchasing grab bars and benches in potentially hazardous areas, like bathrooms, foyers, and steps.
And finally, seniors with dementia are prone to wandering off. If this is a concern you have for your loved one, consider purchasing an inexpensive door chime to ring when the front door is opened. This will alert others in the house before he or she can get very far.
What steps can you take this week to create a caregiving plan for your parents? Let us know in the comments section.
Kathleen Webb co-founded HomeWork Solutions in 1993 to provide payroll and tax services to families employing household workers. Kathy has extensive experience preparing ‘nanny tax’ payroll taxes. She is the author of numerous articles on this topic and has been featured in the Wall Street Journal, Kiplinger’s Personal Finance, and the Congressional Quarterly. She also consulted with Senate staffers in the drafting of the 1994 Nanny Tax Law.
Medical laws change, but it is important to stay current if caregiving is a responsibility you’ve undertaken for a family member or if it is your profession. There are documents you will need to provide physicians with, as well as decisions to make regarding treatments and facilities.
Here are three of the big ones:
HIPAA, the Health Insurance Portability and Accountability Act, came into being in 1996 to help patients gain control over their private information. Only the minimum amount of patient information is available to entities, including caregivers, insurance companies and other health care facilities, unless otherwise directed by the patient.
HIPAA protects patients and holds people accountable for violating the law and patients’ privacy. A violator could spend time behind bars and/or pay a steep fine. However, if a patient requests that their adult child or caregiver accompanies them to a physician appointment or tests, then the provider can release the information. It is clear the patient wants this person to know about their private health information.
The physician has the right to choose who to give pertinent information to if something happens to the patient and they are unable to respond, such as permanent unconsciousness. Even with HIPAA laws in effect, you may want to talk with your patient about a written directive to avoid any miscommunication.
2. The Stark Law
If your patient or loved one is living in a skilled nursing home or assisted living facility, understanding The Stark Law is critical. To avoid conflict of interest and financial kickbacks, The Stark Law puts into effect the protection of Medicare and Medicaid patients. The law states physicians cannot refer patients to a clinic, laboratory or facility and order services in which the provider will receive financial gain in return. This includes a member of a provider’s family.
For example, a physician may be violating The Stark Law if they refer a Medicaid/Medicare patient to a nursing home owned by the physician’s adult child. You want to ensure your patient is receiving the best care and not receiving unnecessary treatment. The Stark Law works to protect patients from unethical practices by enforcing civil fines and penalties and excluding violators from federal health care programs.
If you suspect a physician or facility is violating The Stark Law, you can report the incident to the Office of Inspector General.
3. Legal Documentation Laws
As a caregiver, legal documents are an important part of your responsibility. Your role as a caregiver can be severely limited without proper legal documentation. The following are a few documents you should have on hand and provide copies to your patient’s service providers.
- Power of Attorney: As power of attorney, you can make medical and financial decisions for your loved one as needed. This document allows you to pay bills on behalf of your patient and make decisions regarding treatments when they no longer can make these decisions on their own.
- Living Will: Experts suggest creating a living will before the need arises. This document provides a written record of the patient’s wishes regarding life support and treatments and removes the emotional factor during a crisis.
- Health Care Proxy: If the patient prefers, they can assign a power of attorney to handle their financial responsibilities and a health care proxy to make medical decisions for them regarding treatments. A health care proxy is only used when the patient is permanently unconscious or is in the latter stages of a mental illness.
An elder-law attorney can explain the details of each of the medical laws concerning seniors and caregivers, as well as oversee the legal documentation you need. Before making decisions on behalf of your patient or loved one, make sure you are up-to-date with any changes to the laws.
Image by Unsplash
Caregiving is a rewarding activity, but it can also be very emotionally and physically draining. Compassion fatigue among caregivers is common, which can lead to burnout, depression, and exhaustion. Not only are these symptoms draining on the caregiver, but over time, they can lead to a decrease in quality of care.
Luckily, today we have boundless technology to assist in both trivial and specialized tasks. Below are some ways that technology can help ease the burden on caregivers and improve quality of care for seniors.
Technology and Senior Care
Technology is mostly associated with and marketed toward young people, mostly because they are the ones who will spend the most money on new technologies throughout their lives. But technological advances can improve livelihoods of people of all ages, especially people with dementia or limited mobility. Caregivers can utilize technologies built specifically for elder care, like remote monitoring systems and wearables that monitor blood pressure and allow seniors to call for help in case of a fall. These devices not only offer concrete benefits, but they also provide a sense of security, so the caregiver knows that there are proper safety measures in place and that they’ll be alerted immediately in the case of an emergency.
Inside the home
Accidents inside the home are not uncommon for seniors. For many, home is where they spend most of their time. When we are in our homes, we tend to be relaxed, and not as careful as we might need to be. This can lead to carelessness and injury. This is why caregivers should look into home improvements like home automation that makes sure devices are off and the house is locked when no one is there. Safety devices like hearing impaired smoke alarms and other home monitoring systems are also recommended. These technologies can help prevent major incidents, while falls can be prevented with the installation of handrails and other supportive structures throughout the home.
Many caregivers find that they cannot take care of their charge alone while still caring for themselves. This may lead to looking for assisted living situations or hiring medical assistance. Unfortunately, because social services are perpetually underfunded, the people in these positions are often at the same risk of burnout as family caregivers. This leads to many seniors being emotionally harmed by neglect or abuse.
But luckily, the Internet provides caregivers the opportunity to do extensive research on service providers. It also provides methods to report abuse and neglect, preventing others from experiencing the same. Phones and computers make it easy to record infractions and hold people accountable. There are also vast online communities giving caregivers ideas and resources for providing quality care, both with and without assistance.
It’s common for caregiving to wear people out. Technology can help you implement safety measures and automate certain tasks. How have you used technology in caregiving? Share your experience in the comments!
Jeriann Watkins Ireland
Jeriann blogs about her financial journey, food adventures, and life in general at dairyairhead.com. Check out her blog or twitter to see more of her writing!
There’s a lot of advice on how to care for someone with Alzheimer’s without, well, losing your mind.
Not a lot of it works.
I was a very earnest child. My poor parents had to deal with me taking things very literally. I still want to correct every mistake and misunderstanding. Luckily, now I have a lot less free time to waste on hopeless battles.
This attitude doesn’t work very well for life in general. It certainly doesn’t fly with someone who has Alzheimer’s.
Then I read an article about a woman whose mom moved in with her and her husband after her Alzheimer’s progressed. Her and her mother butted heads, but her husband and her mom hit it off wildly. This caused its own problems, as it can be tough to watch your husband become your mother’s new golden child.
How did he do it? He loved improv and took every moment with his mother-in-law as a new skit, a new adventure.
Something clicked for me.
I’ve never taken an improv class, although it’s on my list of things I’ve been meaning to do for years, next to learning Spanish. I’ve circled the improv classes in JCC fliers more times than I can count, but I’ve never actually signed up. But, I did have an elementary school teacher who was obsessed with improv and taught our class the basics.
And, thankfully, you can learn just about anything online.
My grandmother, unfortunately, wasn’t as fun as the woman in the story. Most of my time was still spent facing accusations and demands, but at least now instead of feeling insulted, I was working out the next best line. How could I distract her long enough to change the topic? Could I manage to make her laugh? (Usually, no, I could not).
Even if she wasn’t having a good time, my experience was much improved. Instead of trying to convince her that this kitchen that looked just like her kitchen was, in fact, her kitchen, I humored her. I made up elaborate stories about where we were and why it looked so much like her house. There were all sorts of zany reasons why we were waiting there, but don’t you worry, you’ll be heading home shortly. And then we’d get her bundled up and do the equivalent of spinner her around in a circle before a game of hide and seek so we could take her “home.”
I did particularly enjoy her stories about her trip to China as a young girl (not a real thing), the other people she met while she was on her cruise (she was in a nursing home for respite), and her complaints about her boss (her feet were bothering her from standing all day in high heels, although she was bed-ridden and had retired long before I was born).
It made the days a lot more fun and a lot less frustrating.
I never could quite get the rest of the family on board. Everyone else was still trying to convince her she was at home, those were her red shoes, that was FOX News on the TV, they already fed her dinner, and they were her daughter/granddaughter/neighbor. You can’t win them all.
But it worked for me. Maybe it’lll make your day a little easier.
As Alzheimer’s progresses, verbal communication becomes more and more difficult. Alzheimer’s has a devastating effect on the brain’s ability to recognize and process verbal language. Language impairment is considered one of the “primary components” of cognitive decline in those coping with Alzheimer’s.
For those of us who provide Alzheimer’s care, whether as family members or professional caregivers, this makes communication difficult, particularly in the mid-to-late stages of Alzheimer’s. But “difficult” is not “impossible.” In fact, there are non-verbal ways we can use to communicate clearly with Alzheimer’s sufferers, commonly known as “body language.”
But there’s a catch here: few of us are truly fluent in body language. When we’re growing up, we spend years learning how to read, speak, and write — but this is all verbal language. Most of us didn’t get class credit for learning open posture or how to maintain proper eye contact.
So consider this post a crash course in why body language is more powerful than you might think, how caregivers can become more fluent in non-verbal language, and what you can (and can’t) say by communicating this way.
Body Language Essential to Alzheimer’s Care
Human beings learn how to read body language well before we ever speak our first word. And for people who are coping with Alzheimer’s, their ability to understand body language lasts much longer than their ability to understand speech and written language.
When verbal language fails those suffering from dementia, they turn to other ways of making sense of their surroundings. Consciously or unconsciously, they start to rely on other signals to interpret the world and the people they interact with. If a conversation can’t be followed, other signals (like crossed arms, anxious tapping, or laughter) become more important than what’s being said. If someone’s shouting, it’s not what they’re shouting, but that they’re shouting that matters.
As those with Alzheimer’s come to rely on non-verbal communication more and more, even small gestures — a slight change in posture, a quiet sigh — can become meaningful and magnified. For caregivers, it’s important that we understand what our body language is saying to those in our care and how we can harness the power of body language to comfort and communicate with care recipients.
Body Language 101 for Alzheimer’s Caregivers
Becoming fluent in body language doesn’t happen overnight. Executives and politicians spend years perfecting the ways they communicate non-verbally. But by making a conscious effort to build and hone our non-verbal communication skills, it’s possible for caregivers to communicate more clearly and effectively with those in our care.
Here are some of the key ways that you can improve your body language fluency as an Alzheimer’s care provider:
- Eye Contact. Maintain eye contact to convey that you’re paying attention to a person coping with Alzheimer’s. Don’t avoid eye contact during conversation. Doing so conveys dismissiveness. Eye contact should be made at their eye level or below — not above, which gives the impression of dominance.
- Facial Expressions. Always be conscious of what your facial expressions are saying. In day-to-day conversation, it’s easy to say one thing and have a raised eyebrow or a twist of the mouth say another. When these expressions are the only thing the recipient can understand, the words your using aren’t what matter.
- Open Posture. Keeping an open posture is a key part of body language. An open posture — facing the person, chest forward, no crossed arms or legs — tells a person that you’re focused on them, open to their concerns, and engaged with them emotionally.
- Avoid Tics and Distractions. Small tics and distractions can show that you’re agitated, angry, or bored when spending time with a person. Tapping your armrest, bouncing your knee, checking your phone, or multi-tasking can communicate that you’re not invested in the person.
- Use Gestures. Using your hands and objects around you to communicate simple messages can do wonders when caring for someone with Alzheimer’s. However, it’s important not to overuse gestures, which can agitate or confuse those with Alzheimer’s.
Using Body Language to Communicate
Body language is a highly effective tool for communication, but it’s a limited one. So it’s important to know what you can and can’t communicate by using body language.
For instance, complex thoughts and directions require verbal language. There is nothing your facial expression or posture can do to tell someone with Alzheimer’s that it’s time to go to the bathroom or that someone has come to visit.
What body language can communicate, however, is much more important. Your body language conveys care, it conveys trust, and it conveys love. For a person with Alzheimer’s, these messages are extremely powerful. They make a person feel valuable, cared for, and comfortable.
Someone with Alzheimer’s might not be able to understand the words “I’m here for you,” or “You can trust me,” or “I love you.” But body language offers a way to make these messages clear. For those of us who care for those with Alzheimer’s, it’s an invaluable tool.
Visiting Angels is America’s choice in home care. Since 1998, Visiting Angels locations across the country have been helping elderly and disabled individuals by providing care and support in the comfort of home. In addition to senior home care and adult care, Visiting Angels provides dementia care and Alzheimer’s care for individuals suffering from memory disorders. There are now more than five hundred Visiting Angels locations nationwide.
Have you ever passed by one of those houses where the crooked garage doors are barely holding themselves together over the heaping bulge behind them?
Then one day, on your usual stroll of the neighborhood, those garage doors are popped wide open for the whole world to see. You shudder and gasp aloud. You don’t want to linger for too long because it is rude to stare, but you silently wonder how someone could live with floor-to-ceiling clutter that has been amassed for decades.
If you are only too familiar with this sight, let me offer you some reassurance that there is a path to purging. When I said yes to the job of caring for my elderly mother, I had no idea I was also saying yes to care for a house that had been equally badly neglected.
Driving up to my childhood home where my mother still lived nearly 35 years later, I see the lawn is no longer green, nor mowed. It resembles something out of the savannah that my father would have tackled in earnest at the first sighting of crabgrass—had he not passed away thirteen years earlier.
When my disheveled, eighty-five year old mother greets me at the door with her warm toothless smile and welcoming hug, I can tell there will be more moments like what Dorothy experienced in Oz when she said to her dog, “Toto, we’re not in Kansas anymore.”
Nothing is recognizable to me.
It’s not like we ever lived with white-glove standards growing up, but we were a tidy family if you didn’t count the mud and blood the brothers were always traipsing in.
But, on this day my childhood home is operating at the highest level of dysfunction. Of five bedrooms, four are being used as attic space where wardrobes from thirty years earlier are sprawled across the floor, mixed in with old blankets and petrified briquettes of cat doo-doo. All I can think to myself is who is going to oversee the gut job needed on this house? Tearfully, I am afraid I already know this answer.
The garage looks worse than what you might imagine.
Even more disconcerting is the pile-up of paperwork saved since my father’s death. My old bedroom is filled with envelopes containing statements stuffed into them, then packed into shoeboxes piled onto the bookshelf, or tucked into drawers, or peeking out from beneath beds.
Depression-era parents. Need I say more? Thank goodness my mother is willing to put her trust into what she calls my good judgment. Health, Safety, Style becomes our mantra for the care that will need to go into her—and her home.
Here are the ABCs to beginning any difficult task: Assess, Begin, Carry On.
Every frontiersman knew to survey the land. What is the kind of stuff piling up, memorabilia or junk? Who will miss it? I feel a sense of responsibility to the other siblings to preserve their trophies, yearbooks, and kinder artwork—theirs to ditch if they so desire.
Before you can salvage anything, you need a good staging area.
Step 1: De-clutter the garage first.
- Clear out discarded toys, bikes, and seldom used items
- Find the Salvation Army or Goodwill that will pick up
- Recycle nuts, bolts; shift furniture, find the floor, push a broom
- Get rid of rusted shovels and the plethora of old tools
- Clear off every shelf—discard paints and other chemical laden cans legally
- Shred-It will make a house call affordably, taking mere seconds to do what will take you months with your home machine that will jam frequently
Step 2: Create smart centers within your garage
- Laundry station-move an old bookshelf to store supplies
- Errand station—use labeled boxes (library donations, record store, Goodwill, Accountant, etc.) as a reminder of which errands to still run
- Paperwork station—tower plastic crates labeled for archived financial statements. Caution: never throw anything away until you understand what it means to your parent’s financial picture. I found wealth buried in the 85th box.
Step 3: Preserving childhood memories for siblings (3-piece set for each child)
- 1) 45-gallon crate 37’L 27”H to store small furnishings, trophies, plaques et al
- 2) Tri-fold board to stack on top of crate for holding Kinder art, or the like
- 3) Colored document pouch, zippered, 8.5” x 11” for important papers, flash drives, or special letters home saved by parents
- Move an old dresser cluttering a bedroom to create new hub for sibling items
Your job is not yet over. Paperwork sorting becomes my passion.
Step 4-Active vs. Archive File statements accordingly.
Active is for accounts paid in the past year. Scrutinize each to make sure your elderly parent is not experiencing financial abuse. File current month’s statement at front, older months behind.
Archive older statements from previous years. Keep these only for gleaning how money changed hands through investing or bank accounts. Cluster 2-3 years of old statements into one lidded plastic crate the size of a bankers box. Label front as “Archive 2014-2017”. Repeat this until all of your bundles are in separate bins. Once you get a handle on the Active, return to the Archives at your leisure to understand financial history.
Efficient closet makeovers will be the next blog posting here.
By Stefania Shaffer
Stefania Shaffer, a teacher, speaker, and writer, is grateful her WWII parents raised her to do the right thing. Her second book, the Memoir 9 Realities of Caring for an Elderly Parent: A Love Story of a Different Kind has been called “imperative reading”. Funny and compassionate, this is the insider’s view of what to expect from your daunting role if you are the adult child coming home to care for your elderly parent until the very end.
The Companion Playbook is the accompanying workbook that provides the busy caregiver with the urgent To-do list to get started today.
Having a parent or grandparent in a nursing home can be incredibly difficult, especially when so many of us have promised we’d keep them at home forever. So often residential care hardly feels like it reduces the amount of time we spend caregiving, with all the driving back and forth, paperwork, laundry, and endless errands.
And then there’s the day we visit mom and she has bruises on her. One of the hardest parts of dementia is that she can’t tell me what happened.
Before you panic and yank her out of the nursing home, read this:
Take it with a grain of salt
Her explanation, that is. People with dementia often mix up the details. Did the aide hit her or did she hit the aide? Remember that you can’t take her story at face value. I’m not saying to ignore her story, but look for some evidence before you make any accusations. Asking her what happened is just one step in figuring out what to do.
Was there a procedure involved?
Routine blood draws, physical therapy, and other minor medical procedures can leave bruising. Check with the nursing staff to find out what medical professionals she’s seen recently and what they’ve done that might cause bruising.
Check her medications
Some medications increase susceptibility for bruising, like blood thinners and heart disease medications. Even pain killers, antidepressants, and asthma medications can cause people to bruise easily. Some supplements, like fish oil and ginkgo, act as blood thinners and can lead to bruising.
Other medications can cause dizziness, leading to bumps and falls.
Check in with the pharmacist to see if this might be the explanation and if there’s any cause for concern.
Liver problems and other conditions can also lead to bruising easily. If nursing home staff aren’t sure where the bruising is coming from, make sure she’s checked over for health problems that might be causing it.
Bruising can also be a sign of vision or balance problems. Talk to her doctor and get her vision checked. Make sure there are grab bars installed in the nursing home and that she’s using a walker or cane if she needs to.
It might be benign
Older people tend to have delicate skin and bruise easily. This is especially true for women. The loss of fat under the skin increases someone’s risk for bruising, as does past sun damage and a host of other factors.
If you’ve ever hoisted an elderly person out of bed when they weren’t being cooperative, you can understand that it’s possible to bruise someone accidentally in the normal course of affairs, even when you’re being careful. It often doesn’t take much force to cause bruising in someone with delicate skin and frail blood vessels.
Talk to the nursing home staff to see if there have been any problems. Has she been resisting being helped with mobility? Has she been bumping into things? Has she been getting the supervision and support she requires?
It may be time to get her physical therapy to help her move around more safely or an investigation into what might be causing her to be uncooperative when getting in and out of bed.
Not only is it easier for elderly people to bruise, they take much longer to heal. A bruise that might heal in two weeks on a young person may still be there months later for someone who’s elderly. This can lead to occasional bruises adding up — and making it seem like a major cause for concern.
It might not be benign
Some dementia patients are placed in nursing care because they’re aggressive toward caregivers — they may be violent toward other patients, too.
Watch how the staff treat other patients to see if a certain staff member is handling them roughly. Make sure they’re lifting patients correctly. Improper lifting is dangerous to both the caregiver and the recipient!
Unfortunately, figuring out if this is a case of elder abuse or not can become tricky with dementia. The signs of abuse we look for — bruises, social withdrawal, confusion, depression, hygiene issues, and weight loss — are all relatively common among elderly dementia patients.
If the staff seem poorly trained or are constantly turning over, that’s a sign that things aren’t well run behind the scenes.
If you suspect abuse, the National Center on Elder Abuse can guide you through what to do.
Finding a safe nursing home
Even in the best nursing homes, where patients are safe and supervised, patients will get bruises occasionally. There will even be occasional bumps and falls.
We can’t protect our parents from everything — and I’ve certainly gotten my share of bruises from bumps I don’t remember. It happens.
But if you’re seeing a pattern of bruising or are noticing other causes for concern, look into it. The more time you spend in the nursing home with her, the better off you’ll both be.
If nothing seems amiss, bruising easily may be part of the new normal. Make sure staff are extra gentle with her. Icing and elevating bruises right away can help reduce marks. Long sleeves and long pants may help give the skin a little extra protection.
Thankfully, as long as bruising isn’t a sign of abuse or an underlying condition, it won’t cause long-term damage.
It’s a question I’m asked all the time by family caregivers:
Can I get paid to be a family caregiver?
It’s usually accompanied by qualifiers:
- I’m not trying to be greedy, but I had to quit my job to take care of my mom.
- My husband isn’t comfortable having a stranger take care of him.
- My insurance will pay for someone to take care of my disabled sister and I’m a trained medical assistant – can’t they just pay me?
Family caregivers often spend a large portion of their income – not to mention their savings – to care for their loved ones. You might even be taking unpaid leave or feel forced to quit your job to fulfill your family obligations. Family caregivers who quit their jobs lose out not only on a paycheck, but on retirement plans, pension plans, and social security benefits. Family caregivers are saving insurance companies and government agencies billions of dollars by providing care – shouldn’t there be a way to get paid something?
Unfortunately, there are only a few programs that will pay family caregivers. We know how hard you work and how much you deserve financial support, but most of the time it is not possible to be paid to be a family caregiver. Because health care differs so much, I can’t provide specific information. However, I can point you in the right direction to find some answers.
Government programs to pay caregivers
Each state and county provides different services for the Administration on Aging. Some programs will provide stipends, reimburse caregivers for supplies, offer training, and provide respite. Paying for Senior Care maintains a list of Area Agencies on Aging and Disability Resource Centers that’s searchable by state and county.
Guardians of children
Guardians of disabled children who are not their biological or adopted children can become subsidized guardians. This allows relatives to receive financial help to care for children and keep them out of foster care.
Structured Family Caregiving
In some states, family caregivers of Medicaid recipients can be paid through the Structured Family Caregiving program. In order to participate, you must be referred by your local Agency on Aging, which is typically run at the county level. The program is run by Caregiver Homes. Caregiver Homes is available in Connecticut, Massachusetts, Rhode Island, Ohio, and Indiana, and will be in other states soon.
- The person receiving care must be eligible for Medicaid and deficient in at least 3 of 5 activities of daily living: dressing, bathing, grooming, using the toilet, eating, walking, or getting in and out of bed.
- Caregivers and patients must live together.
- Stipends typically range between $900 and $1,200 a month, depending on the level of care.
- You will be assigned a registered nurse and a care manager who will meet with the caregiver and patient to develop a care plan and will provide ongoing coaching, training, and other support.
Medicaid varies by state, so contact your local Medicaid office to find out if you may qualify. If your Medicaid office isn’t responsive, the National Resource Center for Participant-Directed Services can help connect you to the state programs that allow the patient to decide how to spend their health care money – sometimes including the option to pay a family member for care.
Unfortunately, Medicare does not pay for in-home care or adult day services.
Private sources of support for family caregivers
Disease or condition specific organizations
Some private organizations will provide stipends or grants to support caregivers. Organizations who offer this each have their own requirements, so contact a social worker to find out more.
Sometimes parents will recognize the financial hardship their care causes family members and will pay their family members to care for them. This may take the form of an adjustment in the amount of inheritance or some other creative reimbursement. Sometimes relatives will pool their money to pay the primary family caregiver. It’s wise to write a caregiver contract and check with an elder care benefits planner or elder law attorney if you decide to go this route, as it can have implications on Medicaid eligibility, taxes, and inheritance.
There’s also the possibility that family members could share the cost of caregiving, so it’s not all falling on one person.
It’s important to make sure family members are in agreement. Finances can bring out the worst in families, especially during stressful times. You may consider family mediation services – the National Academy of Elder Law Attorneys can help you if you’re caring for an aging relative.
Long-term care insurance
Certain types of long-term care insurance will pay for in-home assistance, including family caregivers. These types of policies are relatively unusual and most exclude people who live in the same household from being paid. These types of plans tend to be significantly more expensive. Talk to your insurance agent to learn more.
What if none of these programs will help you?
Even if you can’t get paid to serve as a family caregiver, you may be eligible for programs that will cover adult day services, in-home support, or other ways to ease the financial burden.
Department of Welfare
Caregivers may qualify for other programs, including cash assistance, food subsidies, and medical assistance. Check with your state welfare office for more information.
Resources for those over 55
The National Council on Aging can help you find out if your loved one is eligible for financial assistance for medication, housing costs, and health care. Get started with their Benefits Checkup.
Social service organizations
There are numerous organizations that provide grants or emergency assistance to families. Many of these are specific to location, employment history, and condition. Organizations will provide grants for rent, mortgages, and utilities. Other organizations provide support for food, medication, supplies, and grants for home modifications to meet the needs of people with disabilities. Each agency has its own eligibility requirements, so you will need to search online by specific needs, contact a local social worker, or discuss it with hospital staff.
If you’re caring for a relative and provide for more than half of their basic living expenses, you may be able to claim them as a dependent on your taxes. You may also be able to deduct their medical expenses, even if you can’t claim them as dependents. Visit the IRS website or call the IRS help-line at 800-829-1040. You can also talk to an accountant about these options.
Working while serving as a caregiver
Some companies are more caregiver-friendly than others. Your company may allow you to work part-time, have flexible hours, work from home, or provide additional time off. Or they may not.
Under the Family and Medical Leave Act, eligible workers are entitled to 12 weeks of unpaid leave per year. Some companies even have employee assistance programs. Check your employee handbook to see if your company has set policies. Go over the options with your supervisor and HR before you make any big decisions.
Getting help is possible
It isn’t easy and it isn’t enough, but help is out there. Find out where other caregivers have found help and how it turned out.
Do you use one of these programs? Have you tried to enroll? Is there another program we should know about? Please let us know in the comments.
This article was originally published in September 2014. It’s been updated several times in order to reflect changes to available caregiver support programs.
In the United States, there are an estimated 1.4 million caregiving youth (children under the age of 18), and nearly 10 million Millennial caregivers (aged 18-34 years old). Of the millions of young caregivers, I believe every single one is an advocate. Advocacy means that you speak up for another person’s needs, views, and try to help them get support. As caregivers, advocacy is a way of life. You may speak to health or social care professionals on behalf of your family member, coordinate service care delivery, oversee your family member’s medication administration, and manage your family’s household. You are the expert on your family member’s care.
While you are well-versed in advocating for your family, you may find speaking up for yourself more difficult to do. As a young caregiver, self-advocacy can present its own set of unique challenges.
What are barriers to self-advocacy?
Lack of awareness in society & unsupportive environments: Unfortunately, many people do not yet recognize the vital role young caregivers play in our society. This lack of awareness often means that people do not understand your caring role and how it can impact all parts of your life. Society also tends to overlook and disregard the experiences of young people with caregiving responsibilities, and health professionals may not view you as a “caregiver” because of your youth.
Fear of mistreatment & associated stigma: You may stay quiet about your caring role because you don’t want well-intentioned professors, bosses, or friends to worry over you and treat you differently than everyone else. At work, your supervisor or co-workers may not understand your life as a caregiver, and you may might fear losing your job. If you provide care for someone with a socially stigmatized condition, e.g., mental illness, visible physical disabilities, or HIV-AIDS, you may fear that by speaking out as a caregiver, you will also “out” the condition of the person you care for.
No support available: In some situations, those around may already know that something is “up”, because of late or missed days at school or work. Conversely, you may be very open about caregiving. In such scenarios, people are aware of your caring role, but you find that there is little or no support available to you as a young caregiver. Supportive services may be directed towards your family member, rather than you, the caregiver.
What are ways to self-advocate?
Despite its challenges, the act of speaking up for yourself is impactful and meaningful. Every time you engage in self-advocacy, you continue to spread awareness about young caregivers. Even in the seemingly small moments, your words and actions demonstrate to society that young caregivers exist and matter.
Express your needs and desires within your family: To combat potential feelings of resentment, it is important to keep the lines of communication open in your family. You may want to engage in family group conferences to discuss current and future care plans. If you foresee sharing or shifting caregiving tasks to younger siblings, you’ll want to discuss with them the practicalities of the caring role and what this will mean for everyone in the family.
Inform doctors, nurses, and other health care professionals that you are a critical participant in your family member’s care, and express your desire to be involved in discussions.
Tell professors, administrators, work supervisors, and friends about your caring role and the ways it impacts your life. This may mean requesting a “grace period” to submit assignments, asking for flexible schedules and work hours, requesting to keep your cell phone turned on and kept with you, in case your family member needs to reach you in an emergency, etc. Self-advocacy in the workplace also means knowing your legal rights, so that you may be aware of potential issues of workplace discrimination.
Ask for help: Seek out extended family members, neighbors, or friends to help with caregiving tasks, or to give you a bit of respite. You may also wish to contact supportive organizations for help.
Monitor your own mental health and well-being: Take breaks (even just for a few minutes), practice self-care, exercise, and maintain a healthy diet. Keep up to date with your own doctor’s appointments and annual tests. You may wish to attend support groups and/or seek out a mental health professional if needed.
Get involved: Call or write your government representatives and vote. Use technology and social media to your advantage: there are several online caregiver support groups on Facebook and Twitter, and they can be a great way to meet other caregivers, ask advice, or vent! You could start a blog about your experience as a young caregiver or post videos to YouTube. You may also want to share your caregiving story through participation in caregiver research studies; this can be an impactful way to help other caregivers on a wider scale!
Remain encouraged as you seek to advocate for yourself. You serve an irreplaceable role in our society and you deserve recognition and support!
Can you think of other ways to self-advocate? How have you advocated for yourself and did you find it helpful? Please share your comments/suggestions below.
This article was originally published on the website of Christine M. Valentin, licensed clinical social worker, and may be accessed here.
How to conduct discussion about mortality can be the greatest challenge in a health-care provider’s career. My new book, Life After the Diagnosis: Expert Advice for Living Well with Serious Illness for Patients and Caregivers (Da Capo Lifelong; February 14, 2017) is a guide for professionals, families and patients when faced with poor prognosis and the need to talk about chronic and end-of-life issues. After 27 years of practice in palliative care, I have gained valuable knowledge and unique insights and how to best address these concerns. Since I can’t personally talk to everyone, I’ve written this book—to give all the same information that I give to those that personally contact me. Chapter 14, Difficult Treatment Decisions and Discussions speaks to culture, religion and other traditions that must be handled mindfully when working with aging patients.
Serious illness doesn’t discriminate; it strikes patients of all ethnic and cultural backgrounds. Members of particular groups frequently have traditions that govern how they deal with serious illness, dying, and death.
In today’s Western cultures, the wishes of seriously ill people are paramount. Our laws and institutions are geared to see that their directives are carried out. In other cultures, decisions are based on what’s best for the family and the individual’s interests are less important. The patient’s family, not the patient, is expected to make the important decisions including treatment and end-of-life decisions.
If you want your family to make those decisions, make your wishes clear. Put them in writing. Make sure that they’re in your medical record. Tell your family, friends, and medical providers that you authorize your family to make all the necessary decisions regarding your treatment and end-of-life.
When it comes to cultural differences, my major concern is that assumptions will be made that don’t reflect patients’ wishes.
I was treating Mae, a Chinese-American patient in the ICU when it became clear that she had only a matter of days left. I asked her nurse, who was also Chinese-American, if she knew whether anyone had asked about Mae’s spiritual preferences. Did she want to see a spiritual leader or have particular customs followed? “Oh, no,” the nurse replied, “We Chinese aren’t religious.” Her answer surprised me. It was not what I had experienced. So I asked Mae’s family, learned that they were Catholic, and was told that both Mae and her family wanted her to receive the Sacrament of the Sick, which we soon arranged
You can’t assume that you know about someone because you know their ethnicity, country of origin, religion, or primary language. You certainly don’t know their preferences for something as personal as medical care and spiritual needs at the end of life.
Although cultural traditions play a role in making treatment decisions, that role is not absolute. For example, in some cultures the tradition is to withhold unfavorable information from patients. In those cultures physicians don’t discuss diagnosis and prognosis directly with the patient. And yet, cultures are not homogeneous. Opinions diverge even in the most traditional communities. They are never 100% one way or the other. Ultimately, treatment and end-of-life decisions are personal and vary with each case.
I tell my students to be curious. To ask respectful questions like, “What do I need to know about your culture or religion to make sure I take good care of you?” Share these traditions and practices with your doctors and nurses. If the person who is ill in your family is potentially more traditional than you are, you can ask them the same question- “Grandma, what are the traditions in our family that are important when taking care of people who are sick?” This question about traditions is another opportunity for the person who is sick to find meaning, purpose, legacy and dignity by sharing family and cultural traditions.
On the other hand, I sometimes find that people don’t want straight talk. Some people prefer to be a bit in the dark, to live with some denial. That’s OK, too. The point is that you can never know what someone will say. That goes for me as a doctor and for family members. The goal is not to assume what someone wants, but to ask.
At 84, Mr. Wong, was admitted to the hospital with right-sided abdominal pain. An ultrasound revealed a mass in his gall bladder that looked like cancer. His family told us not to tell him what we found because he wouldn’t be able to take such bad news. They said that in their tradition the family would make all medical decisions for him.
One morning, when Mr. Wong was feeling better, I visited him. He was in bed and a Mandarin interpreter was with his family in her room. I wanted to respect the family’s wish, but I also wanted to respect Mr. Wong. So I said, “Mr. Wong, I have information about what’s going on. Some people want me to tell them everything while others prefer that I only speak to their families. How do you feel?”
Mr. Wong thought for a moment and then spoke in Mandarin, which the interpreter translated. “You know doctor, everyone has to die someday.” I was stunned. I hadn’t said anything about dying. I regrouped and said that yes he was right but what I wanted to know was how he wanted me to handle new information about his condition and whether he wanted me to tell him or his family. “Oh doctor,” he replied, “you will tell me everything. And by the way, it’s OK if you also want to tell my family.”
Mr. Wong went on to tell us that he felt better and wanted to go home. He declined a biopsy that his family had been ready to consent to. Mr. Wong’s family thought they were protecting him, but they complicated the situation and made it more difficult. They nearly exposed him to a biopsy that he didn’t want.
The US and every state have laws that mandate that healthcare providers make interpreters available for any person who doesn’t speak English. These laws are so important because they support better patient-doctor and nurse communication, which is the backbone of good medical care.
Excerpted from Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers by Steven Z. Pantilat, MD. Copyright © 2017. Available from Da Capo Lifelong, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.
Our family at my brother’s high school graduation in 1998, 1 year and half before his life changed forever
This Saturday my older brother will graduate magna cum laude from Volunteer State Community College with his Associate’s degree in Computer Information Technology. While every degree is special, this one is particularly significant. Earning this degree was a hard-fought battle, requiring perseverance, inner strength, and tenacity.
18 years ago, my brother made a decision that put his entire life on hold. When our mother was diagnosed with degenerative disc disease, she underwent a spinal surgery intended to alleviate her pain. Instead, the surgery was performed incorrectly, leaving her permanently disabled and unable to work. Two weeks prior, my brother turned 19 years old, and he was entering his sophomore year at college. He had immersed himself in a full university experience: he was an honors student in mechanical engineering, he was active in rock climbing and racquetball, and he had many friends. All of that changed when our mother’s surgery went wrong. He dropped out of college to come home to provide care for our mother and me, his little sister 7 years younger. He became responsible for her physical care, cooking, cleaning, and he also got a job to pay all of our household bills. In addition, he began taking me to school. I also took part in providing care for our mother, yet my brother bore the remarkable brunt of our mother’s care needs without any outside support or assistance.
Caregiving caused an 18 year gap in time before my brother would march in cap & gown again
While my life as a caregiving youth certainly wasn’t easy, I will always recognize the role my brother played in shielding me from the more devastating effects of caregiving at an early age. Because of him, my life took a very different path. When I look at his experience as a young adult caregiver, I know what my life could have been. Yes, the stress of having a mother in chronic pain sometimes negatively impacted my time in school. But, I will never know what it’s like to have your educational dreams snatched away because of caregiving. Yes, I know what it’s like to be bullied and to not feel comfortable telling other people about your life as a caregiver. But, I will never know what it’s like to be completely socially isolated and experience the loss of every single friend you’ve ever known because your life suddenly became vastly different than your peers. Sure, I know what it’s like to push yourself through school with the goal of becoming financially successful, always mindful that one day your mother’s care will fall on your shoulders. But, I will never know what it’s like to be forced to unexpectedly work a full-time job to carry the weight of a mortgage and an entire family’s household bills at the bright young age of 19. Because of my brother, there are certain sacrifices that I have never experienced.
When I tell people our family story and they ask about our mother, I say that she no longer required intense physical care around 8 years ago, mainly because she stopped having surgeries and her care progressed to the management of her chronic pain.
“Oh!”, people often respond, somewhat dismissively, “So everything is fine.” Others even say, “Your brother isn’t a caregiver anymore.”
“Well,”, I say, always getting a bit flustered, never knowing how quite to explain our family’s situation. For people who have never experienced family caregiving, they don’t quite understand. They don’t know that in some ways, caregiving never really ends, even if direct physical care is needed irregularly. The severe financial impact never ends. The worry over our mother’s health never ends. The constant gaze towards the uptake of future caregiving responsibilities as our mother ages never ends. And for my brother, on the eve of his graduation from college, the impact of caregiving on his career never ends.
Caregiving is the reason why at age 36, despite being “on the right track” at age 19, he has finally earned his first postsecondary degree. Caregiving is the reason why at age 36, he is not yet finished in school; another 2 years of hard work is needed for him to earn a Bachelor’s degree. Caregiving is also the reason why even after those years of going back to school, he still isn’t sure how to answer the big question of “what do you want to be when you grow up?” because he lost those carefree years of exploration during young adulthood.
I always consider my experience in terms of what I didn’t have to give up because of caregiving, or conversely, what I still was able to experience despite caregiving. That’s all because of my brother. He is the reason why my life was not utterly broken as a caregiving youth, why I was able to pursue my dreams, and why I have hope for my future. He is the reason why my career has been devoted to helping other child and young adult caregivers finally gain much-needed recognition and support in the United States. I firmly believe that because of his conscious actions of selflessness and compassion, millions of other caregiving youths will one day also feel hopeful that having an ill or disabled family member no longer means that they must give up their educational and career goals. People often call my brother a “hero” for our family. Indeed he is. But, as someone who has intimately watched my brother care for us day in and day out for years, I know that he is more than our family’s hero. He has cultivated a legacy that will impact the lives of millions of other young caregivers, and his graduation, is only the beginning of his accomplishments.
Ferrell Lewis, today at his college graduation. He graduated magna cum laude in Computer Information Technology.
***This article was originally published with The Huffington Post.***
When we first become caregivers or when there’s a new emergency, we go into super hero mode. You know what I mean: you do it all, without stopping, at the same time.
Nothing can stop you, until you can’t keep it up. It’s unsustainable. You can only suck it up and forge ahead for so long before you’ll burn out.
You’re burning out
The problem is, even super heroes aren’t super heroes around the clock, day in and day out.
Taking care of someone else all the time without a break leads to anger, resentment, and sheer exhaustion. You can’t think clearly. You snap at people. You can’t connect with people. You’re so anxious you can’t sleep. You’re miserable.
You know what they need. Do you know what you need?
Take a minute to ask yourself: What are you missing? What do you have? The more specific the better.
Most of us have a few coping methods we cling to, often from childhood. They may or may not be right for the challenges caregiving presents. Caregiving is often presenting new challenges, all on top of each other. You’ll need a whole arsenal of coping methods to make it through in one piece.
Think about what you really need. What specific things are getting to you the most?
Of the things that are getting you down, which ones could possibly be changed? Even a little?
Fight decision fatigue
Caregivers get stuck with a lot of responsibility. So many of the choices we face have no good answer, leading to immense guilt and anxiety.
Decision fatigue is a real thing, and it’s exhausting. Do yourself a favor and eliminate any decisions that don’t matter. Patterns, habits, and rituals are great for this.
- Grab a few things from your closet that all match each other and fit you. Ignore the rest of your clothes and rotate these.
- Eat the same things every week. Stick with one simple grocery list. If you can, get them delivered automatically…or from a neighbor who’s going to the store anyway.
- Schedule appointments at the same times as much as possible.
- Schedule times to make phone calls, do paperwork, and other chores.
The less you have to think about chores and things that don’t really matter, the more time you can think about the things that do.
Get back control
Sure, we’re making decisions all day, but it doesn’t feel like we’re in control at all, does it?
What makes your life feel out of control? What can you do to feel like you’re back at the steering wheel?
Is someone demanding help constantly when they could really wait an hour? Set up ground rules for requests.
Is the unknowing of a lack of diagnosis driving you to your wits end? Turn to meditation or faith to learn to accept the unknown.
Has your life become a random series of chores? Set up a routine and stick with it as much as possible. Everyone works better when they’re following a routine.
Remember that caregiving is a choice. Perhaps it seems outlandish to imagine being able to walk away, but you could. What would it take? What would make you do it? Every moment you’re taking care of someone else is a moment you’re choosing to do so. You’re doing it because you want to be here, even if it’s hard.
Get in touch with you
You’re a human. Humans make mistakes, say the wrong things, and let people down. You’re going to lose your patience. That’s okay. We all do. Remember that. Other people probably have unrealistic expectations of what you should do. Let them, but remember there are limits to what you can do. You’re already going above and beyond.
Find a way to remember how proud you are of yourself. Maybe it’s journaling, a gratitude jar, or just thinking about it as you brush your teeth. A daily moment of reflection doesn’t have to be involved to be meaningful.
As a human, you still need to have an identity besides being a caregiver. Even if you barely have time for the other pieces of yourself, make that tiny bit of time. People who only take care of other people 100% of the time end up bitter, angry, and empty. This is your life, too.
You’re spending a lot of time thinking about someone else’s physical needs. Lots of caregivers neglect their own — and then die before the person they’re caring for, or become so ill they need a caregiver themselves. Stay in touch with your body, too. Go for a walk, even if it’s short. Don’t skip meals. There are lots of little tricks to stay healthy, even when things are hectic. Other caregivers are happy to share them with you.
You’ve cut out a lot of things in your life to be a caregiver. Surely there’s something caregiving related you can cut back on to make some time for yourself.
When you’re in super hero mode, everything that’s non-essential falls away. Friends and other relationships tend to get cut.
It’s fine to neglect your friends for a little bit, but in the long term it has huge consequences — for your physical and mental health.
Maybe you don’t have time to go out, but there’s always time for a quick text. Things like Facebook can help you stay involved, even if you don’t see someone regularly. It’s also a great way to let people know you could really use some company.
Adrienne found she didn’t want to talk to her old friends about caregiving. She wanted to keep her friendships as a bubble of her old, normal life. Instead, she wanted to talk to other caregivers, who better understood what she was going through. So she created this community.
It’s true — your friends might not understand what you’re going through. Those long hours in waiting rooms and hospital cafeterias are an opportunity to meet new people who get it.
But don’t let go of your old friends. Even if they’re awkward around you now, remember they have their own struggles. Invite them over for coffee, even if your house is a mess and you’re stressed out. Write them an email. Ask how they’re going and listen. You need them.
Know your strengths
None of us are good at everything.
Some of us are just not good at keeping track of bills and insurance paperwork.
Some of us have limits to our patience with other peoples emotional needs and poor behavior.
Some of us aren’t very good drivers.
You’re going to do a lot of things, but you can’t do everything. You shouldn’t do everything. Identify the things you just aren’t your strengths and find help with them.
Who will help? Social workers, librarians, and faith communities are a great start. There are community organizations that will help you with your taxes, provide free transportation, do your yard work, and provide companionship for your caree. Every community has different services, but someone you know can help you find help in your area. You can’t do this alone. And you don’t have to.
This is one of those times when Facebook can really help. Ask for something specific and you’ll have better luck.
If you’re providing 100% of the care and not sharing the burden, if something happens to you, whoever steps into your shoes will be lost. It’s not good to be irreplaceable. Other people will do things differently. They’ll be annoying to deal with. They’ll disappoint you. But it’s still worth it to get help.
People don’t feel good when they can’t contribute. Is there something your caree can do to help you? Ask them to do it. Everyone has something to give — and they feel better when they have the opportunity to share it.
Know what you need
It’s incredibly difficult to know what we need. What will make us happy? People have been studying that for millennia.
When you know what you need, you’re half way to solving the problem. Identifying a need means you can find ways to meet that need…or learn to accept that it’s going to be unmet.
Not getting what you need leads to resentment. Resentful caregivers are not good caregivers, no matter how hard they try.
The thing is, no amount of self-care will allow you to be a 24/7 caregiver for a decade without burning out. Sometimes you need a real break — a vacation from caregiving.
Lots of us are taking care of people we love. We don’t want to go on vacation without them. That’s fine. Bringing in a professional caregiver — or a cleaner, handyman, personal assistant — can free you up to have quality time with the person you love. Rather than focusing just on caring for them, you can really be with them.
Hope is an essential feature of human experience, but for patients living with a life-altering diagnosis, it can be sorely lacking. In my work as founding director of the Palliative Care Program at University of California, San Francisco, I’ve learned that in order to restore hope we have to understand how rapidly changing moods affect patients, which is why Chapter 7 of my new book, Life After the Diagnosis: Expert Advice for Living Well with Serious Illness for Patients and Caregivers (Da Capo Lifelong; February 14, 2017) is dedicated to the “Mood Roller Coaster.”
Understanding the difference between difficult moods and outright depression is part of ameliorating suffering in palliative care. So is finding milestones and events to help the patient increase their focus and determination—and possibly even extend their life. Marion’s story is an excellent example.
Marion was a 64 year-old woman with interstitial lung disease, which is a relentless scarring of the lungs. She needed high levels of oxygen just to stay alive. Marion was so sick that she couldn’t leave the ICU. When I asked her what she hoped for, she told me that she hoped to see her daughter get married. She explained that her daughter was engaged and the wedding was planned.
“Congratulations,” I said. “That’s wonderful. When will the wedding be?”
“In 10 months, in Napa,” Marion replied.
I couldn’t imagine Marion being alive in 10 months let alone well enough to leave the hospital or the ICU. So I arranged to speak with Marion and her daughter about the situation and their hopes.
Fast forward a week later to an ICU filled by a bride in a flowing white gown, a tuxedoed groom, identically dressed attendants, and a robed minister. Marion sat propped up in her bed, inhaling oxygen in her nose, and with a corsage pinned to her hospital gown. Our hospital staff, all dressed in different colored uniforms, gathered in front of Marion’s bed, where the ceremony was held. There wasn’t a dry eye in the house.
What a beautiful wedding! Marion’s wish came true. Because we asked about her hopes, we were able to help her achieve them. Was it what she imagined? Not at all. But it was joyous, memorable, and meaningful and the beautiful eclipsed the grotesque. It might not have happened had we not asked about hope.”
Excerpted from Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers by Steven Z. Pantilat, MD. Copyright © 2017. Available from Da Capo Lifelong, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.
Even as aging Americans revel in the splendor of their well-earned retirements they still harbor plenty of worries, such as outliving their savings.
Near the top of the worry list is the fear their health will deteriorate so much they’ll be forced to seek long-term care, a situation that could live them and their families slammed with expenses far beyond what they can afford.
Surprisingly enough, the solution to this particular problem may be right in their home, tucked away in a drawer.
“Many people don’t realize that a life insurance policy can be converted to pay for assisted living, home care and all other forms of long-term care,” says Chris Orestis, a senior-care advocate and author of the books “Help on the Way” and “A Survival Guide to Aging.”
“What’s really sad is that, when they’re suddenly confronted with the reality of long-term care expenses, some older people may let the policy lapse figuring they can no longer afford it. And it’s the very thing that holds the answer to their financial worries.”
Part of the problem is that, while millions of people own life insurance policies, few of them understand their rights as owner, says Orestis, CEO of Life Care Funding.
“Life insurance policies are assets,” he says. “Think of them just like a house. The owner of a house wouldn’t just move out without selling their property. Why should the owner of a policy ‘move out’ without first finding out what the real value of the policy is?”
Here are a few key facts about how that life insurance policy can be converted to a long-term care benefit plan and potentially rescue from the senior and their family from the back-breaking financial strain of long-term care:
The benefit plan is not long-term care insurance
A long-term care benefit plan allows policy holders to use any form of life insurance policy to pay for long-term care. In essence, what was a death benefit that would have been paid to the person’s survivors becomes a “living benefit” that covers the expenses of the policy holder now.
You can convert when you need it
You can’t wait until you’re about to move into a nursing home or assisted-living facility to buy long-term care insurance. At that point, it’s too late. But you can convert a life insurance policy to a long-term benefit plan at any time. There are no waiting periods, no care limitations and there are no costs or obligations to apply, Orestis says.
The full death benefit comes into play
The value of the conversion is not limited to the cash value, but is based on the death benefit. “That means the senior will receive a maximum amount of value toward their long-term care benefit plan,” Orestis says. If the insured person dies before the benefit amount is exhausted, any remaining balance is paid to the family or the named beneficiary as a final lump-sum payment.
“Families can go broke trying to provide for a loved one,” Orestis says. “In many cases, they could have avoided it but they had only known about this solution.”
Chris Orestis is CEO of Life Care Funding and a 20-year veteran of both the insurance and long-term care industries. A former Washington, D.C., lobbyist, he is a nationally known senior-care advocate and author of the Amazon best-selling books “Help on the Way” and “A Survival Guide to Aging.” Orestis also is a legislative expert, featured speaker, columnist and contributor to a number of insurance and long-term care industry publications. He is a frequent guest on national radio programs, and has been featured in the Wall Street Journal, the New York Times, USA Today, Fox Business News and PBS.
Navigating the ins and outs of the world of insurance can be a difficult task no matter how old you are. The laws are constantly in flux, and talking to an insurance agent can leave you wanting to toss your phone in the trash. When you’re caring for a family member, it can get even more complicated. To help make the navigation easier, here are a few of the most important things you need to understand about your parents’ or family member’s Medicare coverage.
Medicare Comes in Parts
You’ve probably heard commercials talking about Medicare Part D. What does that mean, and what happened to parts A, B and C?
Part A covers hospital visits and any care related to those visits. Most retirees qualify for this automatically.
You have to sign up for Part B, which covers physician’s visits. The premium for this is automatically deducted from Social Security payments.
Part D, the one you’ve probably heard the most about, covers prescription drug costs.
Part C, though it isn’t officially called Part C, is designed to cover the gaps between the other three parts of Medicare. It’s most commonly called Medicare Advantage, but you can’t always sign up for Advantage while you’re signed up for the other three parts of Medicare.
Confusing, isn’t it?
Thankfully, the federal government has set up an online plan chooser to help you pick the best plan for yourself or your loved one. If you’re still confused, you’re not alone and you’re in luck — each state has set up a state health insurance program (SHIP), which puts you in touch with a live person to help you navigate all the various parts of Medicare.
Ask for Itemized Bills
Even with all the coverage Medicare provides, you will likely find yourself looking at bills from hospitals, doctors’ offices or labs that weren’t covered by Medicare. While this is to be expected, it’s important to go over each of these bills with a fine-toothed comb.
Make sure each bill you receive, whether it is one that needs to be paid by you or one that was paid by Medicare, is actually for a service you received. Most of the time it will be correct, but transcription errors can lead to you receiving incorrect bills.
If you think something is wrong, or you’ve received a bill for a service that was never rendered, ask for an itemized bill. This will make the hospital go back over their records. If a mistake was made, chances are you’ll never hear anything about the bill again.
Keep Your Paperwork Organized
Most of the time you spend when dealing with Medicare will be keeping track of appointments and paperwork. Not only will it help you find errors that require the request of an itemized bill, it will also help if you’re dealing with multiple doctors.
It can be hard, if not impossible, to get some doctors to read a patient’s chart. You might find yourself paying for repeats of tests or procedures that may or may not be necessary. If you think a test has already been done or a procedure has already proven ineffective, speak up. Bring the paperwork to back you up.
Asking questions is your very best friend when it comes to Medicare. Whether you’re talking to a SHIP representative while you’re picking your parent’s plan, or a doctor or nurse, ask questions and take notes. A few questions you should always have in your arsenal include:
- Is this procedure covered by my parents’ insurance? If not, is there a similar alternative that is covered?
- What are the options available for psychological treatment covered by Medicare? This is an essential question if you receive an Alzheimer’s or dementia diagnosis. While there are a number of resources available, they are not all covered by Medicare.
- Have you read the patient’s chart? It’s not a rude question, even if it might sound that way. A chart is a wealth of information that is far too often overlooked.
- What is covered when it comes to preventive care? Preventive care can be a great way to, as its name suggests, prevent problems in the future. Knowing what is covered can save you a lot of money in the long run.
Keep your questions in a notebook or a memo file on your phone and if you think of new ones, add them in as well!
Even people who have spent their entire life studying the ins and outs of Medicare often find themselves puzzled when a new law or piece of legislation hits the books. If you’re taking your first steps into the world of insurance, be prepared to be confused. Just know you’re doing the best you can and there are tools and people out there to help you through the most confusing parts.
Image by Cathal Mac an Bheatha
[Editor’s note] While it seems a little inappropriate to share, this article raises some good points. Many people think of death as black and white — you’re alive or you’re not — those of us who’ve been around death know it’s not quite so simple.
Sometimes the dying process can be a difficult and lengthy one. Just how do you determine when someone is no longer alive?
Before a body slides into a morgue or is lowered into a grave, how can we know if someone is really dead? As medical science advances, the guidelines to determine death have changed, too. Miracle Max from “The Princess Bride” once assured us that “there’s a big difference between mostly dead and all dead.” It was… (more…)
One of the hardest challenges I experienced in caring for my father was helping take care of him when he was hospitalized. His memory got worse and his confusion was heightened being in a new setting. He suddenly became aggressive and agitated and had to be temporarily restrained which increased his agitation even more. I felt helpless and heartbroken.
It is not unusual for seniors to find themselves facing some type of medical problem due to a medical condition or accident that requires hospitalization. When you add that condition to someone who already has memory loss or confusion the need for specialty care becomes elevated. The first thing to do is understand why a hospitalization can trigger these types of reactions:
- They may be in pain or uncomfortable because of the medical problem and not understanding why they are in the hospital. They may have to undergo medical treatment like x-rays, injections, IV’s, catheters, that can be very frightening and painful.
- Their regular routine has changed and they may be unable to sleep in a hospital setting causing more confusion and fear.
- They are in a new place with hospital staff that are strangers coming in their room all hours day and night which can be very frightening and confusing.
- Delirium, or sudden mental confusion, can occur with a hospitalization. It can be triggered by an infection or extreme stress. Even people with no memory issues can suddenly have an altered memory status.
Now you have an understanding of what the potential reasons for enhanced memory or
behavior problems are. It is important to note there are concrete steps you can take to help
manage these problems or at least try to reduce the severity and longevity:
Work With Hospital Staff at time of Admission
The hospital staff needs to understand what your loved one’s baseline memory and functionality is so they can act quickly if changes are noted.
Have a Familiar Family Member Spend as much time as possible with the patient
Having someone your loved one knows be close by to help advise staff and calm the patient is very important. Just seeing a familiar face can reduce agitation and anxiety.
Discuss Hospital Policy on Management of Patient with Aggressive Behaviors
Talk to a doctor and hospital staff about what they recommend when these instances occur and patient and staff safety become problematical. They may suggest restraints or medication that can calm the patient. Make sure you are OK with the plan. Do you want to be contacted if this occurs? Are you against the use of restraints? Ask about other options like a sitter or an alarm.
Consistency of Staff and Routine
Request that your loved one has the same nurse, nurses aide, or other staff when they are working. Having people a patient is familiar with can reduce the incidence of behavior problems or enhanced memory issues. Also having the same routine every day can be helpful. For example meals and physical/occupational/ speech therapy sessions at the same time can help orient a patient.
Placement of Patient
If your loved one is disruptive have him/her in a room closer to the nursing station and without a roommate. This helps ensure staff will be more attentive as issues arise. Not having a roommate disrupts the frequency of unfamiliar people coming in and out possibly causing regressive tendencies.
Visual and Verbal Reminders
Try to have a clock and calendar visible to help orient your loved one. Have photos of family members with names on them. When visiting, speak softly in short sentences identifying who you are. Be in front of the your loved one by their face so you can be seen and they are aware you are there. Hospital staff should be advised to also use these techniques. Remind patient’s why they are in the hospital. Refer to your loved one by name or relationship, i.e.. “Dad this is Iris, your daughter.”
Use Calming Techniques
Using a smile or gentle touch can go a long way to calming an agitated person.
Don’t dispute or argue about what they are saying. Instead try to understand why they are saying it. My father told me he saw a cow outside his hospital room. Rather than discounting it I looked out his window. I noticed a piece of construction equipment that was oddly shaped and looked like it might have horns. I asked him if that was the cow? It was. Use reassuring words. If they seem worried about something ask why.
Don’t try to rush them into doing something. Allow time for them to prepare and explain what is going to happen in understandable steps. Offer reassurance that you will be there as things that might cause anxiety will be happening.
Bring Familiar Items from Home
If your loved one has a special pillow, blanket, clock or photograph, bring it to the hospital. If they like specific music, use that as something to do together during your visit. If they wear glasses, dentures, hearing aids make sure they are there because that can help with communication and orientation. Things can easily get misplaced or disappear from a hospital room so keep track of where they are placed as much as possible.
Good communication is a key component in making the hospital stay go as well as possible. Make sure that information about your loved one’s deficits is placed in their chart, their care plan, and if there is a board in the hospital room for special care instructions place it there. Also you can write this information on a piece of paper and hang it on the wall near their bed. If you see new staff working with your loved one, make sure they are aware of any special concerns or care needs. These steps can bring peace of mind and lessen anxiety for all concerned parties.
Family caregivers have to go through a lot – giving care to a loved one can be frustrating, difficult, and heartbreaking. And that’s just normal, day-to-day life – things can become harder when a catastrophe happens, like a sudden fall or other critical, life-threatening injury.
Because of this, even family caregivers who live with their loved ones should be taking steps to help the one they’re caring for stay safe and avoid injury – especially in the bathroom.
The bathroom is the #1 place where elderly people fall – clocking in at 35.6% of all nonfatal falls in the elderly. Because of this, it should be one of your first priorities when it comes to the safety and security of the loved one you’re caring for.
We’ve put together a list of 5 of the easiest ways you can help secure the bathroom for your loved one, and help mitigate the risk of a disastrous fall. Check them out below.
1. Install Grab Bars
Grab bars are one of the simplest and least invasive precautionary measures you can install in your bathroom – and they’re quite inexpensive. These bars allow your loved one to have a solid surface to hold and grab, whether they’re just looking to keep their balance, or attempting to prevent a nasty fall.
Typically made of stainless steel or another high quality, sturdy material with a grippable synthetic or rubberized surface, grab bars are absolutely essential – and not just in the shower.
A greater majority of falls in the bathroom occur on the toilet – not the shower. Because of this, grab bars should be installed both in the shower, and near the toilet, where they can offer aid to your loved one when they’re attempting to sit down on the toilet, or stabilize themselves when getting up.
2. Prevent Slips – And Remove Trippable Rugs
Slipping is another huge cause of falls in the bathroom – a tiled surface with water or a shower without some kind of rubberized mat can be a huge risk to an elderly person who lacks balance or strength. Any surface that’s a risk should have a rubberized mat installed, with proper steps taken to ensure that the mat will not slip itself, and can drain water and other fluids away easily while maintaining a grippable surface.
Making sure that all rugs, mats, and non-slip surfaces are secured is incredibly important, as unsecured rugs and mats are another huge cause of falls. Think about it – your loved one will never assume that these items are out of place, so even the slightest movement or upturned corner could be enough to trip them up.
Remove dangerous rugs and mats, then replace them with secured rubberized mats that are non-slip, and won’t move around or turn up at the corners.
3. Pay Attention To The Toilet
As mentioned above, toilets pose an even greater risk than showers when it comes to accidental falls – this is due to the fact that they are used more often, and usually not perceived as risky – whereas most elderly people know that showers are slippery and could pose problems, and thus are alert, the toilet is viewed as an everyday necessity that’s not as dangerous, which can put them off their guard and cause accidents.
Besides grab bars, consider other safety equipment for toilets – items like raised toilet seats can be very helpful, as they integrate side-grip bars with a high-profile design that minimizes the time that the elderly spend trying to balance and sit on the seat.
Toilet safety rails can also be considered if the design of a bathroom precludes grab bars – these devices consist of two large, sturdy safety rails anchored to the side of the toilet, and allow for increased stability when attempting to stand up from a seated position.
4. Take A Second Look At The Shower
Once you’ve put in grab bars and non-slip mats, you may think the shower is totally safe, but you’re not quite there yet.
Exertion can be a problem when it comes to showering – the elderly are more likely to tire out physically, which can be an issue when combined with hot temperatures that their bodies are less suited to mitigate. Because of this, it’s recommended that further safety precautions be taken, beyond mats and bars.
Reorganizing the shower can be important – everything that your loved one needs during a shower should be accessible without moving or reaching – this can lead to catastrophe, even with grab bars and mats.
A shower stool may also be a good investment – combined with grab bars, it is rather simple to sit down and get up on these non-slip stools as necessary, adding safety and autonomy to the shower experience.
Another problem can be getting in and out of the shower – the steps necessary and the awkward balance required to swing a leg out of a bathtub or high shower can be extremely dangerous. To help mitigate this risk, shower steps can be used – these non-slip devices allow a higher step profile, and allow the user to descend more gradually.
If even that is too much of a risk, you may consider a walk-in tub or shower – while expensive, these specialized designs are very friendly to the elderly, allowing easy entrance and exits.
5. Improve Visibility
This is often overlooked – but the elderly tend to use the bathroom more, and tend to wake up multiple times at night to urinate.
This can be extremely dangerous, depending on the lighting conditions in your specific home, but these risks can be mitigated somewhat by night lighting running from the bedroom to the bathroom, or even motion-sensitive lighting in the bathroom.
Even the most alert elderly person may trip or fall if they can’t see what they’re walking on, so it’s essential that this risk is mitigated, especially in the already-dangerous bathroom.
Mitigate Risks, Maximize Safety and Autonomy
It may be embarrassing to discuss the details of bathroom safety needs with your loved ones, or the ones who you’re giving care to, but it’s absolutely essential. Even just one fall can lead to poor health outcomes and long recovery times, so catching these problem areas before an accident is absolutely essential.
Don’t delay. Take a deep look at the bathroom, figure out what steps need to be taken, and ensure the safety of your loved one, and help them regain more control and autonomy.
As Our Loved Ones Age
All things considered, aging is a natural process that affects our daily living and self-care. We recognize that with old age, many problems and disease condition set in, making it difficult for loved ones to carry out their basic activities of daily living, also referred to as ADL.
Some of ADL that become challenging with aging and illness are:
- Personal grooming
- Moving in and out of bed or chair
- Climbing stairs
- Maintaining a safe environment
Instrumental Activities of Daily Living
Health experts have categorized another group called IADL—these complex activities require some expertise and decision-making skills:
- Using public transportation
- Handling medical emergencies
- Taking and preparing medications
- Finance management
- Social activities
Knowing When We Need Help
Regrettably, as our loved ones are affected by various illnesses, they often find it difficult to carry out their daily routine tasks.
Seeking some form of help from family caregivers or a professional in-home service, can provide much needed relief and support. Let your loved ones manage their lives as long as they can.
The idea is for your loved one to live an active, productive, healthy lifestyle as long as possible. There are tools and exercises to maintain and increase their independence and support both ADL and IADL:
- Occupational therapy
- Strength training
- Balance exercises
- Brain games
- Ergonomic equipment and devices
In occupational therapy, our loved ones learn to exercise on a regular basis in order to maintain their functional independence. This refers to one’s capacity and capability to carry out their daily activities with minimum help from caregivers.
Furthermore, the lifelong benefits of exercise, strength training and balance exercises on a regular basis can ensure our loved ones enjoy lifelong benefits, and continue to independently handle their daily activities with ease.
4 Basic Necessities
Our loved ones should develop the habit of exercising regularly and continue with the practice. As well as helping them carry out their ADL, it will enable them to stay active. Exercise and occupational therapy are more of a necessity if our loved ones are frail. OT can significantly reduce their dependence on help from others.
Prospective memory is a form of memory that involved remembering to perform a planned action or recall a planned intention at a future point in time and successfully carry our these instrumental activities. I’ve found, in my practice, that brain games significantly improve prospective memory and IADL.
Some Brain Games to Try
- Memory Card Games
- Computer Applications
- Board Games
In general, the more enjoyable the activity, the easier it will be to get your loved one to try it. Sensorial stimulation can increase their ability to remain mentally independent. Each activity should be tailored to their abilities and interests. Keep their hands exercised, strong and limber. It will make it easier for them to do so many of the activities listed above.
Equipment and Devices
- Canes and Walkers
- Grab Bars
- Raised Toilet Seats
- Special Eating Utensils
- Ergonomic Writing Pens
- Magnifying Glass
- Hearing Aids
In conclusion, figuring out your loved ones difficulties before there is a problem can make independence a lot easier for them and for their loved ones.
- Practice ambulation. Use a cane of walker to maintain their balance when needed.
- Install grab bars throughout the house—in hallways, the kitchen and bath for stability.
- Purchase special eating utensils for proper control
- For loved ones with arthritis, there’s a special pen that will ease difficulty writing.
- Purchase a magnifying glass to help them see more clearly.
- See a doctor to be fitted for a hearing aid.
Are you thinking it’s time to schedule a family meeting to talk about your aging parents?
Don’t do it.
I’m really comfortable talking about caregiving and I love my family, but the thought of sitting down with them all at once to discuss it stresses me out.
Would you want your entire extended family to gather together so they could plan out your impending death? That sounds awful. Let’s save family gatherings for fun stuff.
Start the conversation
You don’t need a special occasion to talk about aging.
The sooner you start talking about aging, the better it is for everyone. The longer the conversation is delayed, the more it’s going to feel like a big, scary problem. Aging isn’t a problem. Enough of us need help, even temporarily, long before we’re getting AARP in the mail that it’s good to have these discussions with everyone we care about.
First, write down all the questions you have for your parents. Maybe you want to ask them:
- What will you do if you need help every day?
- How much can your family help you?
- What would you do if you couldn’t stay in your own home?
- How can you adapt your home to make it safer?
- How can we pay for medical care?
- How can we pay for home health care?
- How can we pay for nursing care?
- What’s most important to you if you become very ill?
- Who do you want to make decisions for you if necessary?
Then, answer all of these questions for yourself. What would you want if you were ill or injured?
Look over your insurance policies, your medical coverage, your savings, and your bills. Fill out a living will. Think about what your family would do without you.
Then think about how you should approach these topics with your parents.
Perhaps the easiest way to start the conversation is to talk about yourself. I’m a millennial, but I’ve given both of my parents copies of my living will. Calling my parents to discuss insurance plans elicits information on their own plans and concerns. My debates on whether remodeling my bathroom to conform with universal design surely get them to look at their own bathrooms with a critical eye.
Know what matters
The idea isn’t to get ready for your parents to die, it’s about knowing what they value the most. What pieces of their identity are most crucial? What gives their life meaning? These are the sorts of things parents are probably happy to talk about.
The stronger your relationship and the better you know each other, the easier it is to talk about what they’d want their lives to be like if they were to be seriously ill or disabled.
These aren’t things most people think about. Sometimes people can’t answer because they have no idea what they want. You have to talk it through a couple times before you can stick a medical directive in front of someone and expect them to fill it out.
These conversations are so important. My mother hasn’t written out a living will, but we’ve talked about enough things over the years that I feel confident that if something happened, I could make the choice she’d want me to make for her.
Plan from the beginning
We spend so much time planning our retirement, but people will refuse to talk about picking a home where they can age in place or sketching out a long-term care plan. Not talking about these things doesn’t make them go away, it just makes it scarier when it does happen.
When you evaluate a new place to live, think about how you’d be able to navigate it on crutches, with a walker, or in a wheelchair. When looking for a new job, think about the medical and disability coverage. How much is enough to save for retirement care? Ask your parents how they navigated these decisions as each of them comes up.
Don’t make it awkward
Any time someone tells me “we need to talk” I feel a little panicky. Don’t make it more awkward then it has to be.
There are so many great articles, podcasts, books, and movies to prompt deep conversations about what matters to someone. We talk about what we’d do if we won the lottery, we can learn to talk about things that are more likely the same way.
Then you’re talking about this amazing book you just read, not planning their demise.
If you’re really ready to get creative, plenty of historic cemeteries offer tours. Quite a few of them are gorgeous places with fascinating stories. If your family shares a certain type of humor, bringing it up while standing in a crypt is one way to make the conversation unavoidable.
According to the National Alliance for Caregiving, nearly 20% of the U.S. adult population has taken on some form of family caregiver duties. Not only does full-time care demand time and resources, but it is evidently harmful to the health of the caregiver.
In fact, one study shows that healthcare costs for caregivers rise as their loved ones continue to decline. Even after the caregiving ends, the immune system can take up to three years to fully recover from the stress and strain of caring for a loved one.
Anyone who’s flown recently knows these familiar words: “In the case of a sudden descent, oxygen masks will fall from the overhead compartment. Please secure your own mask before helping others…”
With a little modification, this pre-flight advice may just save you from burning out: Before you care for others, please take care of yourself. If we’re going to be at our highest level, it’s critical that we take care of ourselves even as we care for our loved ones.
In this article, we want to briefly overview three essential ways to do just that.
1. Engage Family & Social Networks
As a full-time caregiver for elderly or disabled loved ones, you’ll want to tend towards isolation. After all, in home care can demand virtually all of your time, energy, and money. At the end of the day, the last thing you’ll be concerned with is keeping up your social life.
To combat this tendency, make it a point to reach out to family and friends. Additional support from your community will be crucial at every stage of this journey. Communicating with the outside world on a regular basis will keep you from becoming lonely and disconnected from the world.
2. Mind Your Own Health
As we saw above, caring for another can paradoxically take its toll on your wellbeing. One of your primary caregiver duties must be to preserve your own health first.
A nutritious, well-balanced diet will be crucial for keeping you in top condition. Regular exercise will not only boost your health but will help manage the heightened stress levels that come along with full-time care.
Naturally, adequate sleep will be vital to reducing caregiver stress and managing the physical demands of care. Be sure to check in with your primary care physician regularly as well.
3. Take Advantage of Specialized Support
There are more resources available to full-time caregivers today than ever before. Online, you can find information on everything from healthcare planning to end of life support. You can even join online community support groups to learn from others’ experiences.
You also need to connect with living, human beings in the real world. Websites like the Alzheimer’s Association provide listings of local support groups. You’re carrying a heavy burden. These groups will help you to connect with and be encouraged by people who know what you’re going through.
Finally, don’t be ashamed to take advantage of various respite care options. Whether you hire a nurse to come into the home for a break or you can make use of an adult day care center, respite care will provide you the break you need to regroup and take care of life’s everyday concerns.
Your caregiver duties will demand more than you ever knew you had to offer. Look after yourself along the way and be amazed at just how far your body will be able to sustain you as you care for your loved one.
By Adinah East, VP Quality Improvement, Caring People Inc
If you have a loved one who is aging the issue is not if but when a time will come that additional help may be needed. In my experience as a medical social worker and a caregiver for my parents I know this is a conversation that is very difficult to initiate. Nobody likes to talk about aging, illness or death. Let’s be honest, this is something we all will face. This conversation involves tackling tough topics:
- Getting sick and not being able to care for yourself.
- What do you want done if you are unable to make medical decisions for yourself.
- How do you feel about aging and eventually facing your own death?
- What insurance or money do you have available if you need additional help?
- Is it time to leave the place you have called home?
- Is your will or healthcare power of attorney properly completed?
You want to start this conversation from a place of love and caring. It also has to be a collaboration. You also have to start slowly and be aware that it is a process. This will not be one discussion but a series of talks over time as circumstances change and new challenges may arise.
There are things you can do to help it go as smoothly as possible:
Begin the conversation when your parents are alert and healthy and can make decisions from a competent place. They will be more comfortable and less defensive having this discussion when there are no current problems or deficits.
Wait for an Opening or Create One
Move slowly. Mention a friend whose parents are ill or that you are updating your will. Suggest that it got you thinking about your mom and dad. Ask if they have thought about aging and what they would want to happen? What kind of help would they want and from who? Would they want to remain at home or consider moving to a place where more support might be available?
Share the reason you are wanting to talk about this. You want them to be safe, prepared, and understand what options are available for them. You are not angry at them and don’t believe they are incompetent if that is true. Tell them you want them to continue to have as much quality in their life as possible and you want to contribute to make that happen.
Make sure the time you initiate this discussion is optimal. Don’t do it when you have to leave in half an hour. Do it when there are no distractions or additional people that don’t need to be a part of the conversation. Don’t include too many people because that may make your senior feel more defensive. Choose a stress free time to initiate this talk.
If you have a good relationship with your parents than you may be the ideal candidate to initiate this talk. If not you may want to include a trusted family member friend, doctor, priest, neighbor, that can help your loved ones feel more comfortable about addressing these sensitive topics. If you are doing this with someone else you may want to meet ahead of time to plan on what direction you want the conversation to go and who will play what role. Rehearse what you want to say and try to anticipate their responses. Make sure the message you give your parents with someone else is a unified message.
Choose the opening topic
You don’t want to throw out all of these major questions at one time. That will feel overwhelming and cause any future discussion to derail. Pick the topic that you believe is most relevant to them and one that your parents will be most open to.
Maybe they just came back from a doctor visit. You can use that as a place to begin to address questions about potential health concerns. If you know they are feeling their home is becoming harder to maintain that gives you an entry way to ask about what their thoughts are about the next step if the house becomes increasingly hard to manage.
Some Final Thoughts
If the conversation does not go well don’t be discouraged. A process has begun that you can return to and reference at a future date. Take notes about what has been said. Perhaps you can all agree on a future time to set including whatever requests your parents make regarding the parameters. Maybe the participants can agree to gather information to facilitate the next meeting. Ask your parents if there is someone else they would like to attend future discussions.
Try to remain empathetic and compassionate with each other as you enter this uncharted water. If it is clear you need an impartial mediator to manage the discussion you might want to get a geriatric care manager. They can be found at aginglifecare.org.
Finally, be patient. This is new territory for you all. When a parent agrees to work through these issues, there is no greater gift they can give you.
In this guide, let’s look at ways those with disabilities can stretch their dollars. The purpose here is not to portray anyone as “less than” or “needing special help.” For us, the bottom line is “If you can save money, why not do it?” We just want to make sure you know about the options.
There’s one thing we know for sure: people like Jon Morrow, Joni Eareckson Tada, Stephen Hawking, and so many others, prove that a disability doesn’t mean “incapable.” Not by a long shot.
Discounts, Services, and Special Offers Available to People with Disabilities
Here’s a two-word tip that can save you hundreds or thousands of dollars every year: Always ask.
Businesses typically instruct their employees to refrain from suggesting discounts. That’s not because they don’t want you to save money. It’s because they don’t want to risk offending someone
Many customers would be glad if a clerk pointed out a senior discount, or “15% off for women on Tuesday” special, but some shoppers would get angry at the suggestion. That’s why store workers seldom say anything. In most cases, you need to know in advance about available specials, or you need to ASK.
Asking, by the way, is a simple procedure. You need say nothing more than this: “Hey, do you offer any special discounts that I may be unaware of?”
Businesses love it when the word gets out about their specials. Discounts bring in customers and discounts encourage repeat visits. They WANT you to know. Our aim here is to help them out and alert you to special prices you may be missing out on now.
Organizations that Help People with Disabilities Get Discounts and Special Pricing
Let’s begin by reviewing a few of the organizations that advocate for people with disabilities. These groups can provide all kinds of assistance. They can also be an excellent platform for finding opportunities to network with others.
Discounts for People with Disabilities
This site was founded by a couple who totally “understand the financial burden of disabilities.” After Mara was diagnosed with Multiple Sclerosis, their lives changed dramatically. Her income-producing ability decreased, but expenses shot up.
They first discovered a tax discount Mara’s disability made them eligible for. That encouraged them to look for other potential savings. They needed every penny they could save.
And once they started looking, they began finding opportunity after opportunity. So they started a website to help others with a disability get help.
Features of Discounts for People with Disabilities: You can search by U.S. state and county to find special offers close to you. Categories included are extensive.
Here are just a few of the types of discounts listed:
- Assistive technology discounts
- Banking services special offers
- Education discounts
- Health care supplies at reduced rates
- Prescription plans for discounted medicine
- Tax breaks for people with disabilities
- Transportation help and rides for those with disabilities
Be advised that not all (or even most) of the offers you will find on this website are free. Many, however, are low-cost or tied to another program that will help with a purchase. Use the search feature there as a way to open your eyes to the potential.
This site is a clearinghouse for information on programs and services available via the U.S. federal government to those with disabilities.
Here are the categories covered:
- Benefits for people with disabilities
- Civil Rights and those with disabilities
- Community Life – includes information about financial help, independent living, personal assistants for people with a disability, community-based help, and more.
- Educational Assistance for students with disabilities
- Employment Opportunities for those who have disabilities
- Health, Housing, and Transportation assistance for those with disabilities
- Emergency Preparedness, Technology, and Accessibility
Check the Quick Links section for easy access to programs and phone numbers that can open the door to a whole array of services aimed at providing help for those with disabilities. This site alone has the potential to save you thousands of dollars annually.
Invisible Disabilities Association
Not all disabilities are obvious. Some suffer from mental disorders, learning disabilities, and other maladies that are often “hidden.”
According to the Americans with Disabilities Act (ADA), anyone who “has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment” qualifies for benefits under the act.
Accordingly, the Invisible Disabilities Association (IDA) seeks to reach and educate those who may not realize their rights and the potential benefits available to them. While the IDA doesn’t list specific discounts or special purchasing offers for individuals with a disability, it is an excellent clearinghouse for information.
Here are the categories covered:
- The definition of “invisible disability”
- Living with invisible disabilities – encouragement and online resources
- Programs for those with disabilities, including the Brain Ideas Symposium
- Disability awareness – including a blog and a newsletter
- Disability awareness events – seminars, awards ceremonies, other events
- Networking and involvement – social media and a support community
If there’s one message we want to get delivered with this guide is that discounts, services, and special offers for people with disabilities are widely available. In most cases, though, you need to know about them and/or ask about them.
Few people will approach someone with a disability and say, “Hey, did you know you’re eligible for a special program?” The risk of offending someone is just too big to risk saying something.
Microsoft, for example, goes above and beyond in their desire to employ workers with disabilities. Microsoft success stories abound, yet you generally need to hear about the opportunity in order to take advantage of it.
SeaWorld and other entertainment providers often provide programs to help guests with disabilities avoid long queues for rides and offer discounted admission for these individuals and their assistants – but you have to ask. Call guest services in advance to find out what you’re eligible for. They want you to have fun, and they’ll often go the extra mile to make sure you do.
Managing a disability can be tough, but you don’t have to handle it all by yourself. Plenty of people, programs, and organizations want to help. Your end is let your needs be known. Never feel bad about asking for help. None of us can function well without the love and assistance of others.
This article first appeared on CouponChief.com: https://www.couponchief.com/guides/savings_guide_for_those_with_disability
Maxwell Ivey (The Blind Blogger) is an inspirational and motivational personal coach who also runs a business brokering carnival rides and amusement equipment. A native Texan, Max loves to sing and spend time with his unique and crazy dog, a “Greymation” named Penny.
Taking preventive steps to help reduce the risks of injuries sustained from falls and slips can improve a senior’s quality of life. Aging adults can make accommodations to their home by age proofing their home to minimize future in-home accidents. Age-proofing a home isn’t about remodeling the entire house. Safety updates can be as simple as eliminating clutter or installing new light bulbs. Although purchasing a fire extinguisher, buying a new bed, or paying contractors to install handrails or an in-home elevator may all require spending some money however, these costs are helpful investments to ensure a senior’s safety and quality of life. This infographic published by Easy Climber, provides a home improvement checklist to the aging population to help make aging in place safer.
Easy Climber is part of one of the country’s largest home remodeling companies, an organization dedicated to providing products and services that enable seniors to successfully age in place.
When disabilities or memory impairment make going out more difficult, seniors can feel like they’re not able to do the things they love anymore. Going online can help them stay social, learn new things, and have fun without the hassle of going out.
That is, of course, if they can navigate the internet!
Here are some tools to help seniors get online, stay safe, and have a good time — giving us time to get some things done or maybe even have a few moments of peace and quiet!
Skills to get started
If your senior is able to attend classes in person, check with SeniorNet or your local library to see if they offer services to help people get online. If not, there are online classes and videos you can help them access.
This great website helps seniors learn the computer skills that feel like second nature to us — like using a mouse — that can be difficult to get a hang of.
The BBC created Webwise as a beginner’s guide to the internet. It starts with computer basics, walks you through email, introduces users to the internet, and helps guide seniors through the basics of social media. It even explains how to stay safe online. This is a great resource.
Senior Planet’s tech tips section is an always-up-to-date source for information on the latest tech trends, apps, and tools.
A friendlier experience
If you’re helping set up a computer for someone with visual or hearing impairments or trouble typing, this site will walk you through adjustments you can make so they can have an easier time navigating the web.
Clear out the clutter of typical search engines and direct your senior to Good50 instead. They’ll get the same results with an easier navigation experience.
Clear away the clutter of a typical PC interface and replace it with something designed to be intuitive for seniors.
So many caregivers find their requests for help fall on deaf ears. So many people say they’re willing to help, but then they never seem to be around when you need them. Why does this happen?
Friends and family
It can be uncomfortable to do, but letting people know you could really use their help is important. Ask a neighbor if they could pick a few things up for you while they’re out. Let your community organizations know you could use a volunteer for a few hours to clear up your yard or keep your mom company. See if your friend would come cook dinner and eat with your family once a week. The more specific you are, the better your chances.
It can be a real challenge to break up tasks into pieces that strangers can help you with, so start small. Hopefully soon certain asks will be taken off your plate without you having to do anything about it — the neighbor who mows your lawn when he does his and the friend who’ll take your dad to the doctor every week.
People will say no and let you down, but people will also help.
Many people want to help, they just don’t know what you need. It’s like that friend you keep meaning to see, but never make real plans with — get specific and it’ll actually happen. People feel good about helping. Think of all the times people have helped you in the past — they’ll be there for you again.
Sometimes people offer to help just like they ask you how you’re doing today or comment on the weather — it’s just a reflex. They’ll be surprised to hear from you if you call them up and ask them to follow through.
Other people really mean it when they say they’d like to help, but they don’t know what to do. Often times they’ll come through if you ask them to do a specific task.
It can be frustrating to ask people for help multiple times and have them turn you down. Everyone’s busy, not just caregivers, but there are ways around feeling like coordinating help is more effort than it’s worth.
Apps like Tyze and Caring Bridge help you by saying what you need and when you need it and allowing people to step in when they’re available. When people offer to help, add them to your network of supporters on the app. Make a list of the things you need help with. Ask them in person or over the phone, too.
Medical professionals often have to put their guard up against getting too involved with patients, so they may cut you off or seem cold when you tell them how much you struggle. They may also not take the time to figure out what, exactly, it is you’re asking for.
If you ask direct questions — can I get help with this bill? can I get medication delivered? is there home care help available? — you may have better luck.
Ask yourself this
Do you want help or someone to listen?
If you’re frustrated with someone’s attempts at giving you advice, ask yourself what you’re looking for from the conversation. Do you want advice? Offers of actual help? Or do you just want someone to listen and encourage? Let them know what you want.
Do you want an expert or someone who’s been through it?
There’s a time when you want specific advice and a time when you’d like to commiserate and hear about someone else’s experiences. Remember that an expert may have never actually had to apply his or her advice. Each person’s experiences are unique, so what helped one person may not help you.
What am I asking for?
How much of the background information does someone need to know to understand how they can help you? So many times in life a brief question is more likely to get attention than a long story.
Who to ask
Your doctor likely has no idea how much things cost or what programs are available to help. Doctors also rarely have the time to listen. What you can do is ask your doctor or nurse to refer you to a social worker.
A social worker can:
- provide counseling for you and your family
- connect you to support groups and other families
- help you find financial support
- help you communicate with the medical team
Many people struggle when a family member is seriously ill or disabled. Social workers can help you cope with the financial, emotional, and practical problems you’re facing.
I still remember the days when my parents chose my wardrobe. They paid for my clothes and therefore I had to wear what they wanted. Needless to say, their selections were less than fashionable, resulting in me getting a healthy dose teasing on the playground. This helped me learn a valuable lesson: when others get to make decisions on your behalf, it’s really hard for them to set aside their own tastes and motives. I call this the Decision Maker Bias.
Many decades later, I now find myself heavily involved in my parents’ care and often have to decide what’s best for them. Should they move into a facility or live on their own? Do they need a caregiver, or perhaps even a geriatric care manager? Should they downsize or keep living in their house with a stairway? I constantly catch myself forming strong opinions on each of these topics, but after some introspection I realize that there is a trace of my own interest in them. I genuinely want my parents to be happy, so I created a framework that helps me spot decisions where I might be affected by the Decision Maker Bias.
We often try to get our parents to move closer to ourselves, thinking that they will benefit from us being able to spend more time with them. However, we also have to consider the cultural impact on our parents’ lives. Would a culturally conservative 90 year old from the Midwest feel at home near Berkeley, CA? Will they be able to connect with their neighbors, and will they find a local church that fits their needs? While it’s true that we might be seeing them on weekends, they may experience isolation and depression on all other days of the week. Also, their old friends and neighbors they leave behind are often restricted in their mobility, making it very hard to see each other again. When relocating an elder, we have to remember that this is more traumatic to them than we can imagine.
Safety is the cornerstone argument in almost all elder care discussions; we use it to downgrade houses, move our parents to assisted living facilities, veto long trips and outdoor activities, etc. But what we often forget is that money can buy safety – you can hire caregivers, install home safety equipment, use smart monitors, etc. In other words, the question should not be: “Is it safe?” but instead: “Can we afford to make it safe?” You won’t always be able to say yes, but be aware that being an overprotective adult child is not always in the best interest of your parents – sometimes the extra effort and cost it will take to keep them safe might be worth the happiness they’ll get out of their wishes for autonomy and independence coming true.
I don’t believe that this is happening between me and my parents, but I’ve certainly encountered it as part of my work at Kindly Care – as caregivers and elders spend a lot of time together, inevitably they start forming strong bonds which can make the adult children jealous. Particularly, the topic of oversharing sensitive family stories seems to come up a lot. Caregivers are in a difficult spot – as a companion, a part of their job is to be a great listener, but not all topics are good for their job security. Adult children can get suspicious that the caregivers are being noisy, and it’s hard to determine who initiates such conversations. What’s clear in those situations is that the adult children face the Decision Maker Bias: their hurt feelings can hinder their parents’ ability to bond with their caregiver.
When encouraging my Mom to be more active, I usually suggest that we go for a walk. I just love the outdoors, and it’s one of my favorite ways to bond with her. However, I recently read in the New England Journal of Medicine that dancing trumps all other recreational activities when it comes to mental acuity in aging. Well, dancing is my least favorite activity, and now I face the same dilemma that parents face when helping their kids decide which sports to pursue – should I encourage something that we’ll both enjoy? This just reminds me once again that our personal taste has a real impact on the people we care for.
Are there any other areas where you can spot the Decision Maker Bias? Leave them in the comments so that we can all be more aware, and get better at realizing our bias when we make decisions on behalf of the ones we love.
Igor Lebovic is the CEO of Kindly Care, a self-serve care management platform that makes it incredibly simple to privately hire caregivers without having to worry about sourcing, safety or compliance.
Follow Igor Lebovic on Twitter.
Featured image: Roman Nerud / Shutterstock.com
You’re a family caregiver and need outside help. These days, most large and mid-size towns have caregiving agencies. Before you sign with an agency do your research. Keep in mind that it can you weeks to adapt to a paid caregiver. That’s because you are creating a partnership.
My husband’s legs are mostly paralyzed and I’m his primary caregiver. With help from therapists he learned to stand, stand and pivot, and walk 50 steps with the aid of a walker. Still, he needs lots of support. I’m on the job 24/7 and rely on paid caregivers. A caregiver comes each morning and stays for two hours.
The training and expertise of paid caregivers varies widely. Retired nurses, nursing assistants, and nursing students are an ideal match for our situation. Just as I want the best for my husband, I want the best for paid caregivers. You probably want the same and these tips will help you forge a partnership..
Start with a home “tour”
Even if your place is small, the caregiver needs to get a sense of the space. Caregivers need to know where the linen closet is, where incontinence supplies are stored, which drawers contain underwear, and which contain socks. I store towels in baskets with labels: towel sets, hand towels, floor towels (for the shower wheelchair puddles and drips).
Explain your daily routine
Our routine is so detailed that the agency created a task list for caregivers, a practical idea and one you may wish to use. I think a routine helps caregivers and care receivers alike. It also helps with time management. Spending too much time on one task deletes others.
Take advantage of perks
Most caregiving agencies allow caregivers to do light housekeeping and you may as well take advantage of this. I ask the caregiver to dust, vacuum, clean mirrors, etc. The caregivers know where my cleaning supplies are stored and I keep them well stocked.
Follow agency rules
Paid caregivers aren’t allowed to dispense prescribed medications or apply prescribed lotions. Always heed these rules. Still, I tell the caregiver about the medications my husband is taking because some cause sleepiness.
Frame concise, clear sentences
Caregivers must adapt to different settings, people, routines, and equipment. Often they race from one client to the next. To save time, be as concise as possible. For example, “Please carry the laundry basket to the laundry room.”
Share special needs
My husband wears a brace when he practices walking and getting ready is a process. The nine steps: 1) put on support socks; 2) put on shoes; 3) put brace on left leg; 4) put lift on right foot to equalize the length of his legs; 5) put half sock on left shoe so the paralyzed leg can slide; 7) get the walker; 8) brace the walker as he stands; 9) Be ready to catch him if he falls. I help my husband stand and follow behind with the electric wheelchair.
Follow the Golden Rule
Treat caregivers as you would like to be treated. When the caregiver leaves I say, “Thanks for your help.” According to one caregiver, we’re the only people who do this. Without paid caregivers I would be an exhausted, aching, discouraged wife. Paid caregivers make my days easier. Cheers for them all!
Chronic illness is expensive; we all know that. Doctors, medications, skilled nursing, home enhancements, all of this has a cost. Sometimes it may seem easier, and the only option for you, the working caregiver, to just pay it out of pocket. My advice is that you should refrain from doing this as much as possible. The best way I can describe my reasoning is by likening it to the warning they give on airplanes; put your oxygen mask on first before attempting to help others. If you are incapacitated, you can’t help anybody.
The same principle applies to your finances. If your finances suffer, this maybe not only a hindrance to your future but to your ability to care for your loved one. Below is a list of a few things you will want to try to avoid if needed to dip into your own pocket:
- Your retirement plans: This can have costly implications on the long term growth of that account and can really put your own retirement in peril. Typically, loans are tax free, however, if they are not paid within 5 years, it will be counted as taxable income. Also, some retirement plans do not allow loans, so if you take it as a withdrawal, it will count as taxable income as well as an additional 10% penalty and you will never be able to put that money back into the account.
- Adding your parent as a dependent on your health insurance: I have heard of some success stories with this, however, I would not count on this. It may not even be necessary with the new healthcare exchanges and, if your parent is over the age of 65, they are eligible for Medicare.
- Claiming your parent as a dependent for taxes: Claiming your parent on your taxes is allowable if you are provide at least one-half of their support. However, your parents income level has to be below the personal exemption amount (for 2016 is $4,050). If they are receiving any Social Security, this maybe a hard number to hit, so any tax benefits will be hard to come by.
- Health Savings Accounts (HSA) and Flexible Savings Accounts (FSA): Both of these accounts are tax savings vehicles to help pay for medical expenses. Money from these accounts needs to be used for qualified medical expenses for the individual and their family. If they are used on a non-qualified expense or for a benefit not covered on the plan, they will be subject to income tax as well as an additional 20% penalty tax.
Being a family caregiver for someone living with chronic is a difficult task and using some of your assets to help with care may be inevitable. The saving grace is the political discourse seems to now be addressing this issue for family caregivers. There are a few bills presented to Congress to give some financial assistance to caregivers. Even President-Elect Trump has outlined tax incentives to assist the family caregiver. That being said, the gears of democracy grind slowly and until those bills or promises become law, you should try your best to protect your finances so you can survive the difficult task of caregiving for someone with chronic illness.
Few people expect helping a family member to require them to become a bit of a tax expert, but many of us find ourselves navigating major financial decisions.
Your real estate attorney or financial advisor may not offer up information about the tax breaks you’re due as a family caregiver. Asking them if you qualify can save you thousands of dollars of taxes you don’t need to pay!
If you’re about to sell your home or the home of a family member because of their health, read this first and talk to your real estate lawyer and accountant.
We also have tips to share on how to get a home ready to sell. Many caregivers find themselves in charge of selling houses that haven’t gotten a face-life in a while and we need to get the best price for it that we can!
The capital gains tax exclusion
Many people are aware of the capital gains tax exclusion on your primary residence. If you’ve lived in your home for 2 out of the 5 years before you sell it, you don’t owe taxes on the first $250k of capital gains. If you’re married, that number jumps to $500k. That means if your home sells for more than what you bought it for, you don’t owe any taxes on the first $250k or $500k of profits.
Any money you spent increasing the value of the home –like an addition or upgrades, but not routine maintenance — counts toward the original price you paid. So, if you bought a home for $100k, spent $25k in renovations, and sold it for $250k, the IRS sees $125k as the price you paid for the home and you get $125k in tax-free profit.
If you own your home with someone you aren’t married to, you can each claim the $250k tax exemption, for a total of $500k, as long as you both qualify.
You can only use this capital gains tax exemption on your primary residence once in any two year period. However, this requirement is waived if you move twice in two years because of a change of employment, health, or other unforeseen circumstances.
This tax exempt status is incredibly important for everyday Americans who own their home. It helps families support themselves in retirement, pay for college, cover major health care expenses, and climb up the economic ladder.
What if you don’t meet the requirements?
There are many reasons why you may buy a home and have to sell it before you’ve lived in it for two full years. The IRS isn’t known for being a caring institution, but it does try to help family caregivers who need to move. That’s why they waive the requirements if you have to move because of a change of employment, health, or other unforeseen circumstances.
The IRS will grant you a reduced tax exclusion for quite a few caregiving related reasons.
You qualify for a reduced capital gains tax exemption if:
- You can no longer afford to stay in your home because your caregiving has required you to cut back your hours, quit your job, or resulted in you losing your job.
- If you’ve gotten a job transfer or taken a new job to be closer to a loved one who needs support. This generally needs to be more than 50 miles from your old home.
- Your home is not suitable for a family member because of their disability.
- A family member needs to move in with you for health reasons and your home is not large enough to accommodate them.
- If you moved to be closer to a treatment facility for yourself or a family member.
- If the climate of the area you lived was not suitable for a family member’s health.
- Anyone in your household has passed away.
- Anyone in your household has lost their source of income.
- You and your spouse get divorced.
- You’re forced to move because neighbors object to a family member’s mental or physical disabilities.
- A family member requires a service animal and your condo prohibits animals.
A family member, in this case, is your spouse, any children or step-children who live with you, a co-owner of the home, anyone who lives with you, a parent or step-parent, grandparent, grandchild, sibling or step-sibling, your in-laws (including siblings), aunts or uncles, nieces or nephews, and cousins.
If you’re selling a family member’s home for them, they can qualify for a partial capital gains tax exclusion if:
- They need to move into a residential care facility for physical or mental health reasons and have lived in their home for one full year.
- They have become disabled and their home is not accessible.
- Their neighbors object to their mental or physical health issues.
- They can no longer afford their home because they’ve lost their income or their income has been reduced.
- Someone in their household has passed away.
- They’ve gotten divorced and can no longer afford their home.
- They require a service animal and their condo prohibits animals.
You’ll want to get a letter from your doctor to support your need to sell the home in case you’re audited.
If the home owner requires residential care
If your spouse or another family member owns the home you live in, they can include any time they were living in a licensed assisted-care facility as part of the two years, as long as they lived in the home for a year in the 5 years before the sale. If your parent buys a home and lives in it for a year before having a health issue that requires you to place them in a nursing home, they can claim the tax exemption as long as you sell the home within 4 years of when they’re moved to residential care.
If your spouse has died
If you’re selling your home because your spouse has passed away, you can claim any period of time your spouse has owned and lived in the home as if you had lived there and owned it, too. So if you were married less than two years ago and moved into a home your new spouse had owned and lived in for more than two years, you can claim the full capital gains tax exclusion when you sell the home.
If you sell the home the year your spouse passed away, you can file your taxes jointly with your deceased spouse and claim the full $500k exclusion. If you wait and sell the home in a future year, you can only claim your $250k exclusion.
What’s the reduced exemption?
The reduced capital gains tax exemption on your primary residence is determined by a formula.
Maximum capital gains tax exclusion multiplied by the number of days divided by 730
The maximum exclusion is either $250k (if you’re single) or $500k (if you’re married).
The number of days is:
- the number of days you owned the home and it was your primary residence
- the number of days you used the home as your primary residence
- the number of days between when you used the capital gains tax exclusion for a prior home sale and the date of the current sale
You use whichever of the three options is the fewest days.
730 is the number of days in two years.
Let’s say you and your spouse bought a home and a year and a half later, your sister-in-law is in an accident and needs your support. You and your spouse decide to sell your home and buy a new home that’s accessible for her needs. You’d be eligible for a partial capital gains tax exclusion. The math would look like this:
500,000 x 547.5 / 730
273,750,000 / 730
In this instance, you won’t owe taxes on the first $375k of proceeds from the sale of your home.