Aidan Long is a 13-year-old from Montana who has suffered multiple daily seizures since he was 4. The seizures defy medical cure, and some of them continue for weeks, requiring Aidan to be airlifted to children’s hospitals in Denver or Seattle, said his father, Ben Long. The medical bills to Medicaid and his private insurance have been enormous.
“I kept track of these until about 2 million bucks, and then I said I can’t spend any more time worrying about it,” his father said.
As Senate Republicans seek to limit the amount Medicaid will spend on poor people’s health, they recognize that one group has complex medical issues warranting protection: severe special needs. But Aidan and several million other children would not meet the Senate’s highly restrictive definition of “blind and disabled” children whose health coverage would be excluded from the vast reductions Republicans are pushing.
With federal Medicaid spending predicted to drop 35 percent by 2036 under the GOP plan, states would have to shoulder the high medical costs of children with disabilities or else reduce or rescind health services Medicaid now pays for. Those include doctors and specialists; nurses in schools and at home; prescription drugs; and occupational, speech and physical therapy.
“It’s just a fraction of kids who we consider having special health needs who would qualify for the carve-out,” said Janis Guerney, co-public policy director at Family Voices, an organization of families of children with special needs. “The caps are going to put states under so much financial pressure that they are going to do away with the things they don’t have to cover.”
At risk not only are children living in poverty but also kids from working- and middle-class families who have been allowed to enroll in Medicaid because their medical problems are so extensive that most private insurance will not cover it all.
“Absent those supports paid for by Medicaid, the only option many families will have is institutionalization,” said Meg Comeau, a researcher at the Boston University School of Public Health’s Catalyst Center, which helps states improve insurance for children with special needs. “You’ll see kids going into pediatric nursing homes, kids not being able to be discharged from hospitals.”
States Are ‘Going To Be In A Pickle’
Of the 5 million to 6 million children with special needs estimated to be enrolled in Medicaid, 1.2 million would meet the Senate’s definition of “disabled,” which relies on strict criteria to qualify for federal Supplemental Security Income, or SSI, payments. Those children must come from impoverished families who can prove they are blind or have “marked and severe functional limitations” that are fatal or will last continuously for at least a year. Under the Senate bill, the federal government would continue to pay for a portion of their medical bills without setting a financial ceiling.
That would not be the case for the majority of other children with special needs on Medicaid. They qualify because their families have low incomes, so there has been no reason for states to keep track of them separately. Under the Senate plan, the federal government would give states the same amount of Medicaid funding for those children as they would for a child without disabilities, even though that child’s health costs would likely be much higher.
“The potential consequences could be devastating,” said Sara Bachman, another researcher at the Catalyst Center. “States on their own are quite variable on the ability to support the services kids need. The federal participation in the Medicaid program is in an essential underpinning. States are really going to be in a pickle.”
A Republican Senate aide, who was authorized to speak only on condition of anonymity, said Sen. Orrin Hatch (R-Utah), the chairman of the Senate Finance Committee, and several other Republicans wanted to exempt all children with disabilities from the per capita payment limits. But bill drafters ran into a problem: Lack of information about the broad population of children with special needs on Medicaid impeded them from crafting a more expansive definition, and the Congressional Budget Office, or CBO, could not estimate the costs, the aide said.
“We were trying to get as many of them, if not all of them, exempted from the cap,” the aide said. “But the problem is the only good definition and the only good numbers we had were for SSI.”
The Senate bill would require states to begin reporting details on children with special needs so that Congress could expand the exclusion. “Hopefully in a couple of years, when we have a better idea of who they are, we can get them in there,” the aide said.
Some Middle-Class Families Would Also Be Hit
Until then, the most severe repercussions from the Senate bill would fall on a third group, roughly 400,000 severely impaired children from families who are not in poverty but whose children have high health-related expenses. Over the years, states have received permission from the federal government to let these children go on Medicaid so they could be cared for at home. Otherwise they might need to live in an institutional setting such as a hospital or pediatric nursing home or have a parent quit work to stay with them.
Some of these families, including Aidan Long’s, have private health insurance through work. But even the best policies rarely pay for as much as Medicaid does.
Christy Judd’s 8-year-old son, Ethan, has a congenital neuromuscular disease and needs a ventilator to breathe at night. Every week he gets physical therapy to improve his balance and mobility, and Medicaid picks up the hefty copays for both equipment and care. Ethan is able to attend school in Inwood, W.Va., only because Medicaid pays for nurses and aides to watch him.
“His health care would exceed what we make in a year despite the fact that we have very high-quality health care insurance,” said Judd, a high school history teacher. “He requires eyeballs on him 24/7. My husband and I are human beings. We have to sleep. Without access to Medicaid, he could die.”
Medicaid paid for nurses, a feeding tube and special food for Cara Coleman’s 11-year-old daughter, Justice, until the girl’s death in March. Coleman is an attorney from Waterford, Va., and her husband is an executive, but their private insurance provided only $500 in nursing benefits a year. Justice required 12 to 16 hours of nursing a day, which Coleman said might have exceeded $80,000 a year. Medicaid also paid for a portion of her wheelchair and all of the palliative and hospice care that eased Justice’s pain in her final year of life.
“I wish she was still here and that we didn’t have to let her go so early, but if this darn Senate bill passes, I’m almost grateful she’s gone,” she said. “If she were still alive and we had to face the per capita caps in Medicaid, I’m sure we would be in medical bankruptcy and her life would go down the tubes. I’m glad she went on her terms.”
At Aidan Long’s school in Kalispell, Mont., nurses or aides paid by Medicaid must watch him to make sure a seizure doesn’t cause him to fall and strike his head, Ben Long said. He also gets physical, occupational and speech therapy at school, also paid by Medicaid.
“He has to be relearning basic things, how to walk, how to balance himself,” Long said. Occupational therapy helps Aidan use a pencil and put on his shoes. The school district charges Medicaid for those services, but the Senate plan could jeopardize the funding, potentially forcing superintendents to choose between reductions in special-education services or general programs.
Aidan Long, 13, who is covered by Medicaid because of his serious, nearly daily seizures, enjoys fishing with his father, Ben Long, near their home in Kalispell, Mont. (Family photo)
“We’re really grateful for the local support our school district has shown, but they’re kind of stuck like sandwich meat between the rights of the kids and the capacities of the local taxpayers,” Long said.
Aidan Long’s mother, Karen Nichols, put her photography career on hold to care for him. Still, the Longs need nurses to come to their home four or five times a week to relieve Aidan’s parents. Without that support, Ben Long said he would have to leave the communications nonprofit organization where he works.
On his good days, Aidan is active, kicking a soccer ball and fishing with his dad. When the seizures do not stop, the costs can be huge: $70,000 to fly him to a children’s hospital, where the room alone costs $10,000 a night, Ben Long said. “That’s not the care, that’s just the space,” he said.
As the GOP leadership pushes for the Senate measure’s passage, Long has been trying to rally advisers of Montana’s Democratic governor to raise concern, and he has repeatedly sought to reach Montana’s Republican senator, Steve Daines. He said that after he called, wrote and tweeted the senator, Daines responded with a form letter.
“You meet these parents of other kids with these severe disabilities, these parents are fighting to keep their families together and they’re fighting for their kids’ lives,” Long said. “Everybody’s so busy keeping things together, they don’t have the luxury to hire lobbyists.”
Featured image: Ben Long of Kalispell, Mont., worries that his son Aidan’s Medicaid coverage could be withdrawn if the Senate Republicans pass their proposal to replace the health law. (Family photo)
It’s time to stop side-stepping the obvious: In addition to affecting the lives of virtually all Americans in the coming years, Alzheimer’s disease will devastate communities of color. We must act with urgency and coordinated force today to prevent that from happening. According to new data from the Centers for Disease Control and Prevention, Alzheimer’s deaths… (more…)
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!
When an elderly parent becomes unwell or unable to maintain full independence, the child is often the one to step in to provide his/her parent with the loving care they need. Caregiving for a parent is always difficult, but when there are several siblings involved, everything becomes that much more complicated.
There are many different ways that adult children react to their parent becoming dependant on the help of others, and when there is more than one child, these individualized reactions can cause strife and bitter feelings, unless dealt with correctly.
The following are some common ways that this situation can (and does) play out:
1. Siblings Who Refuse to Help
When the child of an aging parent has other siblings around, he/she may be tempted to take the easy way out and allow the burden to fall on someone else’s shoulders. This can obviously cause a lot of resentment among the siblings who end up with all or most of the responsibilities.
One such example is Gloria P.*, who shoulders the entire burden of caring for her aging father.
As Gloria shared, “The responsibilities of caring for my dad, who has dementia, are daunting – and my brothers never visit or help in any way. I took in his dog, I pay his bills, I drive him places – but they do nothing, and honestly, I resent that.”
Carol Bradley Bursack1 recommends several ways to deal with siblings who refuse to take on their fair share of responsibilities:
- Ask for help. Be direct and tell them exactly what you need or what they might do to ease your burden.
- Have a care plan. A care plan can help you organize tasks and responsibilities to make it easier for them to get involved. Also consider keeping an online medical & health record so that you’re always on the same page.
- Let go of expectations. By learning to let go of your expectations and hurt and allowing yourself the liberty to find help elsewhere without feelings of resentment, you are ensuring your own peace of mind.
2. Siblings Who Forcefully Take Control
Alternatively, there may be several children who would like to help – but another sibling refuses their help, choosing to control the situation and have the last word in their parents’ care.
“The opposite problem also exists, when one sibling takes on the entire burden, believing he/she must do everything and shutting out the other siblings. In my family, our oldest sister took Mom on as her personal project. We’re not allowed to have an opinion. Yes, she’s good with financial stuff and Medicare – but that doesn’t mean we don’t want to be involved in our mother’s care! She just won’t let us do anything for our mother, despite our protests,” says Diane S.
3. Multiple Siblings with Conflicting Interests
Even when all or most of the children pitch in and/or get involved in their parents’ care, there can be a lot of conflict caused by different opinions, or, according to Alexis Abramson, gerontologist and author of “The Caregiver’s Survival Handbook,” even by pre-existing tension between siblings:
“When siblings squabble over who will care for Mom or Dad or refuse to help one another with caregiving tasks, the problem often isn’t about caregiving itself, but conflicts and power struggles that may have existed since childhood.” – Alexis Abramson
Many caregivers and senior care managers recommend circumventing such issues by having a neutral third party involved as a mediator.
If the main issue is the differences of opinions, one great recommendation is given by Heidi T., an experienced family caregiver:
“Your first consideration should always be to fill the wishes of the parent wherever possible. If not, try to make the kinds of decisions the parent would have made in the past. This way, instead of getting your personal feelings involved and doing what’s best for yourself, you know you are doing the best you can for your parent.”
Ellie L. from New Jersey is one of seven siblings and she often struggles with keeping the peace between her siblings. The following is her take on sharing the caregiving burden, as well as the mindset that helps her ensure that her mother gets the best care possible without any hard feelings among her siblings.
“One of the hardest things about having an elderly mother,” Ellie begins, “is juggling the many opinions and keeping peace. It’s really true what they say – one mother can take care of seven children, but seven children can’t take care of one mother.
“The first thing I try to remember,” she continues, “is that if other family members give opinions or try to be ‘helpful’ they are doing it from love.
“Everyone makes mistakes; no one does a perfect job taking care of others. If you don’t like the way your sibling is handling it – realize that she’s doing the best she can.
“In my own family situation, I have no reason to suspect abuse. Of course, if one does suspect some kind of abuse, one has to take action!! If not, you have to trust the caregiver to make the best decisions he/she can. (It doesn’t help to mix in for everything… too many cooks spoil the broth!)
“Sometimes, my siblings make decisions that don’t make sense or that were wrong – but once it happened, it’s over and there’s nothing I can do about it. Instead of causing family discord because of the past, I choose to accept it and move on.
“If I feel strongly that something needs to be done a certain way, while my sister feels the opposite, I need to remember that two people can have opposite opinions and neither one is wrong. For example, I feel that our Mom needs evaluation for depression, and my sister thinks I’m just imagining things. In this case (and in many other cases like this one), there is no danger to giving in and waiting some time before re-evaluating her condition. It gets tricky if you think that there is danger, but I find that it’s pretty rare that it gets to that. After all, unless you’re dealing with unreasonable people, your siblings all want what’s best for their mom.
“Years ago, when my sister’s mother-in-law was unwell, she had one sister who was mostly involved in the caregiving. She once complained, ‘They live out of town and they like to have opinions. I’m here, taking care of everything, and my siblings in another town have an opinion on how I do it! You know, if you really want to have opinions, move here and do it yourself.’
“When I heard that,” Ellie concludes, “I made up my mind that if my sisters are going to do things I’m not able to take on myself, I have no right to have an opinion.”
Jessica C., who helps care for both of her parents, agrees with this: “My parents live with my sister. We have three other siblings who live around the country. When I spent a few months at my sister’s home (which is in another state), I gained a new appreciation for what she does for my parents, as well as how difficult caring for them can be. My other siblings, who didn’t share this appreciation, tended to bark out orders. Because of my experience, I have learned to allow my sister to make the decisions, and I encourage my other siblings to do the same. The most important thing is the care and wellbeing of our parents.”
Top 5 Tips for Shared Caregiving
When sharing the caregiving burden with your siblings, Ellie recommends keeping the following pointers in mind:
- People make mistakes – and sometimes what you believe is a mistake may actually not be a mistake at all.
- Two opposite opinions can both be right.
- Appreciate what they’re doing instead of thinking about how you could do it better.
- You all share love for your parent and the fact that you have different opinions is okay.
- Always support each other and respect each other’s opinions. This is especially important because, similar to parents who undermine each other and thus undermine their child’s growth, siblings who don’t support each other in their parent’s end-of-life journey end up undermining their care – and this is true even when you’re in the right.
*Some names have been changed to protect the privacy of the individuals involved.
1 See Top 3 Excuses from Siblings Who Don’t Help with Caregiving
Featured image: Joseph Sohm / Shutterstock.com
About the author: Hanna Landman lives in New Jersey with her husband and child. She writes for AvaCare Medical, an online medical supply store servicing seniors and the homebound across the US. You can see some of her published work about senior care and more here.
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.
More families are relying on caregivers to care for a sick relative or friend. This could be a professional certified caregiver or simply another family member taking on the responsibility. However, the caregiver system needs an overhaul to support the growing number of seniors and those with dementia in the coming years.
With a system teetering on the brink of extinction within an industry expecting explosive growth, what can businesses and the public do to recruit and retain certified caregivers?
The Dangers Facing the Caregiver System
Qualified nursing homes, assisted living facilities and other caregiving businesses are competing with one another to find and keep new caregivers. Due to low pay and inconsistent hours, caregiving is facing a high turnover. With a profession that relies on long-term care, many certified caregivers move from one facility to the next for better quality conditions or pay.
It’s estimated that one in five people in the United States will be age 65 or over by the year 2030. This brings the issue of the caregiving crisis into focus as family members take on the unpaid responsibility of caring for sick relatives as well as caring for their own children. Aging parents unable to care for themselves may rely on their adult children for care, especially daughters.
JAMA Neurology points out that more women tend to assume the caregiver role compared to men. This can leave the female head of household having to cut back from a full time position to part time while caregiving.
If the family member suffers from dementia, which as many as 8.5 million of Americans will by 2030, the stress of giving round-the-clock care may be too much without an additional caregiver.
Many state Medicaid programs continue to offer the same flat rate to caregivers that has not changed for years, leaving caregivers looking for better-paying jobs. In some states, the unions that support caregivers are demanding dues from the Medicaid reimbursement, leaving even less in the caregiver’s pocket.
How Caregiver Employers Can Help
Although most caregiving facilities have their hands tied when it comes to raises, employers should consider offering their certified caregiving employees bonuses and/or more paid days off. Some nursing home owners provide their caregiving staff with special lunches or promise not to cut their hours due to the census.
Nursing home owners and caregiving business managers should stress the importance of long-term care with prospective caregivers. Dementia patients require the same caregiver every day as seeing a familiar face will make them feel safe and secure in their environment.
How the Community Can Help
High schools can also get involved in saving the caregiver system by promoting certified caregiving as a profession. Caregiving as a trade now involves training courses consisting of more than 100 hours of training as well as a standardized test in some states. In Arizona, students seeking certification need to train for 104 hours before testing.
The State of Washington requires 75 hours of training before a caregiver can work for a licensed agency, and those seeking the Certified Nursing Assistant (CNA) will need 85 hours. New Jersey requires 76 hours of training, and Nebraska wants 16 out of the mandatory 75 training hours supervised.
Employers of individuals faced with caring for a sick family member or friend should consider offering paid leave to the caregiver. Although it is only a temporary solution, given enough time away, the caregiver may be able to make long-term care plans. One company, Deloitte LLP, has taken this approach, offering employees 16 weeks of paid leave to care for a loved one.
In states with stagnant Medicaid reimbursement rates for caregivers, the public can speak with their Representatives about the possibility of increases.
In Illinois, a bill raising the pay wage from $12 an hour to $15 an hour for caregivers made its rounds through the Senate and the House. If more individuals bring this concern to their state’s legislation, caregivers may receive the much-needed increased pay rate and caregiving agencies may retain their best employees.
Image by Pixabay
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.
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Caregiving can be so demanding that we lose track of our feelings. When my husband was dismissed to my care after eight months of hospitalization, I felt a dizzying array of feelings. Of course I was elated to have him home, but I was scared too, and wondered if I had the skills to care properly for him.
Totally opposite feelings, such as despair and hope, sorrow and joy, can be exhausting. I’ve found it helpful to name a feeling as soon as I feel it. You may wish o do this too. Why should you bother to track your caregiving feelings?
You’re a caregiver because you care. If you didn’t care you would do something else. Feelings influence your approach to the day, your daily tasks, and the care you provide. Some feelings are pleasant, while others are unpleasant and worrisome. Feelings can divert you and push you off-course, and rob you of sleep. When you awaken in the morning you feel like you haven’t slept at all.
Good feelings lift you up. There are feelings that make you smile, laugh, and remember happy times. Although you can’t control what happens in life, you can control your responses to events. In fact, you can decide how you want to feel. With determination and practice, you can replace negative feelings with positive ones. Admittedly, this takes practice, but the skill is worth your time and effort.
Upsetting feelings pull you down. Caregiving is a rewarding, yet difficult role, and it’s a role that keeps expanding. Frustration, resentment, and other negative feelings make caregiving more difficult. You may find yourself obsessing on one feeling, and think about it all day. Why won’t this feeling leave you alone? You can help yourself by being aware of your feelings, identifying the sources, and naming them.
Your feelings affect your loved one. You may think you’re hiding your feelings, but your loved one can pick up on them. Your feelings may become her or his feelings, an outcome you didn’t anticipate or want. A development like this can make you feel helpless. Indeed, you may wish you had more time to process your feelings. One of your challenges as a family caregiver is to cope with feelings without affecting your loved one.
Processing feelings takes time. It’s common for family caregivers to feel isolated and alone. When you agreed to be a caregiver, you may have expected help from family members. Help may not arrive—something that can provoke anger. Dealing with anger takes time, honesty, and emotional spadework. Coping with anger now is better than stuffing it.
Feelings take physical and emotional energy. When you least expect it, feelings can drain your energy. In fact, some feelings may perseverate, or stick in your mind. Tracking your feelings, and learning to understand them, helps you conserve physical and emotional energy. You may also learn how to pace yourself. Keeping a Feelings Journal may be helpful. Instead of writing anything and everything, you may wish to use a template, and keep the pages in a three-ring binder. I created this template for you.
Today’s Main Goal _____________________________________________________________
Today’s Feelings __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Notes to Myself __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Under Today’s Main Goal you may write “Take Jim to the doctor.” Under Today’s Feelings you may write stressed, cheerful, and grateful. Under Notes to Myself you may write “Make follow-up doctor’s appointment.” Tracking feelings in a journal can help you and your loved one. Best of all, you discover someone special—yourself.
By Anna Gorman
Just before dusk on an evening in early March, Mimi Rosenkrance set to work on her spacious cattle ranch to vaccinate a calf. But the mother cow quickly decided that just wasn’t going to happen. She charged, all 1,000 pounds of her, knocking Rosenkrance over and repeatedly stomping on her. “That cow was trying to push me to China,” Rosenkrance recalls.
Dizzy and nauseated, with bruises spreading on both her legs and around her eye, Rosenkrance, 58, nearly passed out. Her son called 911 and an ambulance staffed by volunteers drove her to Lost Rivers Medical Center, a tiny, brick hospital nestled on the snowy hills above this remote town in central Idaho.
Lost Rivers has only one full-time doctor and its emergency room has just three beds — not much bigger than a summer camp infirmary. But here’s what happened to Rosenkrance in the first 90 minutes after she showed up: She got a CT scan to check for a brain injury, X-rays to look for broken bones, an IV to replenish her fluids and her ear sewn back together. The next morning, although the hospital has no pharmacist, she got a prescription for painkillers filled through a remote prescription service. It was the kind of full-service medical treatment that might be expected of a hospital in a much larger town.
Not so long ago, providing such high-level care seemed impossible at Lost Rivers. In fact, it looked as if there wouldn’t be a Lost Rivers at all. The 14-bed hospital serves all of Butte County, whose population of 2,501 (down from 2,893 in 2000) is spread over a territory half the size of Connecticut. Arco, the county’s largest town, has seen its population drop 16 percent since 2000, from 1,026 to 857 last year. “Bears outnumber people out here,” is how hospital CEO Brad Huerta puts it.
The medical center nearly shut its doors in 2013 due in large part to the declining population of the area it serves — almost becoming another statistic, another hospital to vanish from rural America. But then the hospital got a dramatic reboot with new management, led by Huerta, who secured financing to help pay for more advanced technology, upgraded facilities and expanded services. He also brought in more rotating specialists, started using telemedicine to connect the hospital to experts elsewhere and is now planning to open a surgery center and a long-term care rehabilitation wing. If Lost Rivers had closed, the alternative would have been hospitals in Idaho Falls or Pocatello, each more than an hour away across high-altitude prairie. Instead, “I don’t have to go across the desert for hardly anything,” said Rosenkrance, resting at the hospital the morning after the cow attack.
Rural hospitals are facing one of the great slow-moving crises in American health care. Across the U.S., they’ve been closing at a rate of about one per month since 2010 — a total of 78, or about 6 percent. About 14 percent of the U.S. population lives in rural counties, a proportion that has dropped as the number of urban dwellers grows. Declining populations mean a smaller base of patients and less revenue. And the hospitals are caught in a squeeze: Because many patients in the countryside are older and sicker, they require more intensive and often expensive care.
Faced with these dramatic economic and demographic pressures, however, some hospitals are surviving — even thriving — by taking advantage of some of the most cutting-edge trends in health care. They are experimenting with telemedicine, using remote monitors to track patients and purchasing high-tech equipment to perform scans and other types of exams. And because many face physician shortages, they are partnering with universities and increasingly relying on nurse practitioners, paramedics and others to deliver care. In parts of rural Oregon and Washington, veterans can get counseling through a tele-mental health program. Physicians in Iowa and North Dakota have access to virtual emergency room support.
At Lost Rivers — a dramatic rural health turnaround story — Huerta’s strategy was to use technology and innovation to offer the kind of high-quality medical care that would keep patients like Rosenkrance coming back. “Necessity is the mother of invention,” Huerta said. “Small hospitals like mine are always going to be under the gun. You have to get really creative.”
In the decades to come, America’s heartland and hinterlands will continue to be home to the people who run the country’s farms, forests and fisheries, and its wilder regions will continue to draw visitors who crave nature and recreation. And those people will need medical care. As a result, rural health researchers say hospitals like Lost Rivers are important test cases. They show that, despite daunting obstacles, rural America need not be left behind when it comes to health care. In fact, because they are being forced to innovate faster than their urban counterparts, they can provide a glimpse into the future of medicine.
“Being in a rural place does not preclude high-quality medicine,” said Tom Ricketts, senior policy fellow at the Sheps Center for Health Services Research at the University of North Carolina, Chapel Hill. “They are under a lot of pressure, but there are rural places you can point to as places you would say, ‘This is how things ought to be done.’”
Where Folks Wear ‘Multiple Hats’
It’s a Tuesday afternoon at Tara Parsons’ flower shop. She cleans up as she waits for customers — or for an emergency call. Parsons, a fourth-generation Arco resident, is not just the town florist; she is also the county coroner, a sheriff’s dispatcher and a volunteer emergency medical technician. This afternoon, she is on ambulance duty.
“We all wear multiple hats out here,” she said.
The town of Arco was founded in the 1870s as a junction for horse-drawn stagecoaches. Its quirky claim to fame is that in 1955, it became the first town in the world to be powered by nuclear energy, a credit to the Idaho National Laboratory down the road toward Idaho Falls. Every summer, to celebrate its history, the town puts on a celebration that features a rodeo and a softball tournament.
The streets are lined with shuttered and boarded-up storefronts, some with their signs still on display: the Galloping Goose, the Sawtooth Club. Residents talk nostalgically about the town’s heyday, when there were banks, a bowling alley and a movie theater, back when residents drove to Idaho Falls only twice a year, to get school supplies and do Christmas shopping.
Now, most of the businesses are gone. The town still has a lumber shop, a hardware store and a few auto garages. There’s also a bar, a gym and a dollar store. And around the corner there’s the local diner — Pickle’s Place — where people come day and night for fried pickles and biscuits and gravy.
Like so many other residents, Butte County clerk Shelly Shaffer has a personal connection to the hospital: Her mom worked there, her sister was born there, and she used to take her children there. Lost Rivers Medical Center — which also has two outpatient clinics — is one of the town’s biggest employers.
“It would be devastating if we didn’t have our hospital,” she said.
That was the direction they were headed. When Huerta, the CEO, arrived four years ago, he found the nearly 60-year-old hospital in disarray — dilapidated facilities, fearful employees, reluctant patients and a financial mess left behind by the former CEO. The hospital’s bank account held just $7,000 and morale was at an all-time low. “We were the poster child for everything that was wrong with rural health care,” he said. “It had been a slow, steady decline from neglect.”
Shannon Gamett, 28, a nurse at Lost Rivers, said paydays were nerve-wracking: “We would run as fast as we could to the bank to cash [a paycheck], or it might not clear.”
After borrowing money to pay his employees, Huerta campaigned to pass a $5.5 million bond for Lost Rivers. He asked locals if it was worth $5 a month — one six-pack of beer or two movie rentals — to keep the hospital running. They answered “yes” at the polls, and the hospital emerged from bankruptcy. Next, Huerta set his sights on overhauling the badly outmoded facilities. One of his top priorities was the laboratory, which he said looked like a high school science classroom from the 1950s.
He instituted a new philosophy: If it doesn’t happen at a “real” hospital, it doesn’t happen at Lost Rivers. That meant ending some local practices, nixing little things like letting staff members wear scrubs of any color they fancied, and big things, like allowing people to bring their horses in for X-rays. “I said, ‘I have no problem doing this, but you tell me what insurance the horse has,’” he recalled. “The practice stopped immediately.”
To bring in more revenue, he applied for grants and got the hospital a trauma center designation (the first level IV trauma center in Idaho) so it could get paid more for the care it was already providing. He saved money by inviting the town’s residents to help renovate clinic exam rooms and by moving the medical records to a cloud-based system that didn’t require more information technology employees.
Despite Huerta’s efforts, however, the long-term success of Lost Rivers is not guaranteed. “If you don’t have enough people to support a clinic or a hospital, it has no economic reason to be there,” said Ricketts, the Sheps Center fellow. “It just disappears.”
Arco and Butte County officials hope the local economy will get a boost from a planned expansion of Idaho National Laboratory, which conducts nuclear energy testing and research. Residents also are mounting a campaign to get the Craters of the Moon, a national monument in Butte County, designated as a national park.
“It would literally put us on the map,” county clerk Shaffer said.
But even if that happens, Huerta knows he can’t expect a big influx of new residents. Rural parts of the United States saw an absolute decline in population following the 2008 financial crisis, a trend that has since stabilized. But there is little or no growth. So Huerta has to concentrate on keeping the patients he has — and giving them a reason to keep coming. And it’s working: The hospital is now making a small profit and has some reserves on hand for future projects.
“If you are not offering the services, people are going to go somewhere else,” Huerta said. “And as medicine advances and reimbursement is still pegged to volume, you have to find ways to keep that existing population here.”
One big challenge for Lost Rivers and many other rural hospitals is that their patients tend to be older — and thus sicker and costlier to treat. People 65 and older account for about 18 percent of the rural population, compared with 12 percent in urban areas, according to the National Rural Health Association. An older patient base can strain hospitals because Medicare, the public insurance program for the elderly, doesn’t pay hospitals as well as private insurance does. Elderly patients also may need more intense care than small hospitals can provide.
Rural hospitals have a higher percentage of patients on Medicaid, the public insurance for poor people, which pays notoriously low rates to providers.
Some seniors move to Arco precisely because there is a hospital in town. But for others, what Lost Rivers offers simply isn’t enough.
Residents Ray Westfall, 82, and his wife, Winona, recently put their house on the market after deciding it was time to move to Utah, closer to family and more specialized health care. Westfall has neuropathy in his legs, which causes numbness most of the time. He gets around with a walker. Winona has dementia.
“We can get some care here at the local hospital, but mostly we have to travel to Idaho Falls,” he said.
Westfall is a regular at Parsons’ flower shop. On a recent Tuesday, he bought a bouquet for his wife — carnations, her favorite.
Parsons said many of the emergency calls she responds to are for older folks who’ve suffered strokes, fallen at home or are struggling to breathe. One 99-year-old woman she took to the hospital on this morning had fallen in her living room.
Parsons said she has known many of her patients for years, through her parents or grandparents. As they grow old and get sick, she picks them up in the ambulance and drives them to Lost Rivers.
“And before long, I’m doing their funeral flowers,” she said.
Telemedicine: A New Frontier
At first the Bengal Pharmacy, on the bottom floor of Lost Rivers Medical Center, looks like any other pharmacy, with racks of over-the-counter cold medications, bandages, reading glasses and medical supplies. Shelves of prescription medications sit behind the counter. But it has no pharmacist on site; instead, technicians and students from Idaho State University in Pocatello shuffle about, filling prescriptions.
Their supervisor is a pharmacist at the university, about 80 miles away, who checks their work remotely. Patients who want to talk to him go to a small private room with a phone and video link. The pharmacy is named for the university’s mascot.
For rural hospitals, telehealth can make otherwise faraway services accessible to people where they live, said Keith Mueller, director of the Center for Rural Health Policy Analysis at the University of Iowa. That can be critical, especially during the winter when snowstorms sometimes cut off access to rural towns.
“We can, in effect, bring the provider to the community without physically doing so,” Mueller said. “Even in urban areas, people want more and more convenience in how we receive our services. Here we are talking more about necessity.”
At Lost Rivers, patients can have telemedicine appointments with a psychiatrist. And doctors can get virtual guidance from specialists in trauma, emergency care and burns. But new technologies sometimes take getting used to. “When you lose that hometown community pharmacist, that human touch, when you turn it over to computers, that’s a concept that people have difficulty with,” said Martha Danz, who sits on the hospital’s board.
Leon Coon, 83, said the concept is a bit foreign to him. “I just don’t do that stuff,” said Coon, who works loading hay. “I’m a little old-fashioned.” Sipping coffee at the truck stop early on a Wednesday morning, Coon said he doesn’t even text, so he’s a bit wary of technology that puts him in touch with a pharmacist all the way in Pocatello. But then again, he said he doesn’t rely on the medical system much at all.
“Anytime you go to the doctor, it’s just like a mechanic,” he said. “They’re going to find something wrong. I feel good most of the time, so I just don’t go.”
Shane Rosenkrance, whose wife got trampled by the cow, said he remembers when there were five community drugstores in the valley. Now, he is grateful to have the one pharmacy — even if the pharmacist isn’t actually behind the counter. “To have health care, you have to have a pharmacy,” he said. “And through technology, they are able to do it.”
Telemedicine is hardly a panacea. The projects often depend on grants or government awards, because rural hospitals’ operating margins are slim. And some of the telemedicine and remote monitoring technologies require high-speed internet, which isn’t always reliable or cost-effective in rural areas.
“You can’t do home monitoring everywhere,” said Sally Buck, CEO of the National Rural Health Resource Center. “You can’t do telehealth everywhere.”
Telemedicine also may raise more questions than it answers for some patients, and even create a need for in-person follow-ups. Orie Browne, the medical director for Lost Rivers, said he tries to keep patients from having to travel. But if someone needs more advanced medical care — or a specialist that Lost Rivers doesn’t have — he will refer them to another hospital. The hospital has a helicopter pad, and patients with emergencies that can’t be handled at Lost Rivers can either be flown out by helicopter or transferred by ambulance.
“Ego is a dangerous thing,” he said. “If there is anyone who can do a better job, I’m going to get [my patients] there.”
Nevertheless, Huerta said, he hopes to expand telemedicine, including such services as oncology. Huerta recognizes that Lost Rivers doesn’t have the staff or the expertise to do it all. He believes the hospital should try to do more when it can, and refer out the rest.
“We aren’t trying to do brain surgery,” he said. “We’re not doing Level I trauma. But colonoscopies? Tele-oncology? People in rural areas get cancer too, and it’s demanding driving hours back from a chemotherapy session.”
Rounding Up Doctors
Browne started work at Lost Rivers one recent day in March, then drove 45 minutes to one of its outpatient clinics in Mackay, 26 miles away. One of his first patients was Elizabeth Galasso, 59, who was worried because her heart rate was racing.
“I was scared,” Galasso said, speaking with a hoarse voice as she sat hunched on the exam table. “I felt my heart pounding clear down into my stomach.”
An EKG showed her heart was beating normally. Browne told her it was likely a panic attack, but suggested a stress test just to make sure. He told her that her age, her smoking history and anxiety all put her at risk for heart disease.
“But I think things are going to be just fine,” he said. Galasso reached over and hugged him.
Browne, who took over as Lost Rivers’ medical director in 2015, said he was drawn to the outdoor activities in the area — and the variety of rural health care. He used to have a private practice in Idaho Falls and rotated into Lost Rivers for a week at a time. Now, he spends his days bouncing between the emergency room, the hospital inpatient beds and the primary care clinic. “That’s good for a person who gets bored easily,” he said.
Many doctors, however, don’t feel the same pull. Rural hospitals and clinics have long struggled to recruit doctors. In rural areas, there are roughly 13 physicians — of any kind — per 100,000 people, compared with 31 in urban areas, according to the National Rural Health Association.
Doctors and other medical providers can be enticed by programs that repay their school loans if they work in a rural area. Some medical schools have programs designed specifically for students who plan to practice in rural or underserved communities. Another way to make treatment more accessible in rural areas is to expand the responsibilities of nurse practitioners, physician assistants and even paramedics.
Lost Rivers relies on nurse practitioners and physician assistants to provide care for patients in the clinics and the hospital. In addition to Browne, the medical center has four part-time primary care physicians, some who live hours away and come in once a week. Various specialists, including a cardiologist and an orthopedist, also rotate into the medical center’s outpatient clinics about once a month. And an MRI machine gets driven to the hospital once a week.
Tim Tomlinson, a podiatrist who lives in Twin Falls and drives 100 miles to Arco once a week, spent a recent morning seeing a lineup of patients. One was a man who had to have a toe amputated after a horse stepped on his foot, another a diabetic who needed a skin graft checked on his foot.
Tomlinson said he’s gotten paid late before, and he has seen the hospital nearly shut down more than once. But he keeps coming because he has developed a practice — and he thinks its important patients have access to specialty care. Lost Rivers isn’t unique in its difficulties, he noted. “All those small towns are struggling as young people move out, leaving mostly old people,” he said. “That puts a drain on the hospitals.”
Patients are living longer with chronic diseases now, so the demand for elderly care is only going to increase. If not the rural clinics and hospitals, Tomlinson said, “who’s going to deliver it?”
Even with the decline in the nation’s rural population, many people are rooted in rural America because of family or because they like the outdoors and a slower pace of life. One of them is Gene Davies, who has lived in Arco more than 60 years, runs a mechanic shop straight out of a different era. Handwritten signs sit on a wooden chair next to the door: “Gone to Dr.” “Be back tomorrow.” “Hope to be back Monday.”
Davies said he appreciates the remoteness of the region. “I ain’t got no plans to go anywhere else,” he said. “I’ve seen enough of the other world. I don’t want it.”
Rosenkrance, the cattle farmer, said she’s not going anywhere, either. She’s been coming to the hospital since she was a child, when she ran through the halls while her father worked in the pharmacy. Now her husband teases her about having a standing reservation in the emergency room.
Just before discharging Rosenkrance, nurse Celeste Parson told her she needed to rest physically and mentally. The accident had left her with a concussion, a lacerated ear and a black eye. Then Parson issued her the most important instruction: Don’t do anything that could cause another blow to the head.
“We would really like you to rest up for at least a week,” Parson said. “But the doctor knows for you, two or three days is more realistic.”
As she grabbed an ice pack and her purse, Rosenkrance reflected on the importance of Lost Rivers for residents across the whole valley.
“This hospital is a big deal,” she said. “It’s saved a lot of lives.”
KHN’s coverage in California is funded in part by Blue Shield of California Foundation.
Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.
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.
When I first became my mom’s caregiver, I thought that being a happy caregiver was is a bit of an oxymoron. To those who are thrown into caregiving, it often feels like a thankless job. And whether you’re caring for a loved one alone or with a team of family, it’s emotionally, financially and sometimes physically exhausting. You’re constantly pulled between wanting your own, normal life back and the guilt you feel from wanting your own, normal life back. Unless you’re some magical superhuman being, it’s difficult to find happiness when you’re burnt out and grieving. You’re human. It’s natural.
It’s taken years for me to realize that happiness as a caregiver won’t just fall into my lap. Becoming a happy caregiver is a process. It isn’t a given. It ebbs and flows. Sometimes it’s hard work to be happy. Since time travel hasn’t been invented yet, I can’t change my caregiving mistakes. What I CAN do is share what I’ve learned in the last few years to become a happier millennial caregiver.
#1. Self Care
It’s so, so true that you can’t pour from an empty cup. I would know. I went through the stress of becoming a new mom to twins and becoming my mother’s caregiver simultaneously. In the beginning, I tried to be super mom, super wife, super daughter. And guess what? I was miserable. I was experiencing caregiver burnout and it was very real. If you are unhappy with yourself, it doesn’t matter how many people tell you what an inspiration you are.
According to a 2015 report from the AARP and the National Alliance for Caregiving, there are an estimated 9.5 million millennial caregivers. That means that a little more than 11% of America’s millennials are caregivers — most of them caring for a parent or grandparent. And while that’s a lot of us, it also means that the large majority of millennials are lucky enough to not be in our shoes. Cut yourself some slack. This job is no joke.
Take care of yourself.
Go for a walk or hike outside. It’s amazing what some good ol’ vitamin D can do. Get a foot massage, indulgent in a pricey coffee, treat yourself to window shopping. Do something everyday that makes YOU happy. Put away your phone and just have a moment. You deserve it.
Along with taking time out for yourself, you need to physically take care of your body. Easier said than done, right? I’m no stranger to stress eating and sometimes you just need to indulge. But it’s amazing how much better I feel when I eat healthy and exercise. With every vitamin you pop, it’s also a small reminder that YOU are important and YOUR needs matter.
#2. Let Go of Guilt
As millennial caregivers, most of us are just hitting some of the major milestones of adulthood. We’re climbing our way up the career ladder, moving into our first homes, perhaps we’re getting married and having babies. When you suddenly find yourself caring for a declining parent or grandparent, it can be a jolt. It’s only natural to wish for the way things were. Don’t feel guilty for sometimes missing the way your life used to be.
On the other side, guilt also comes from not being able to be with your loved one enough. This person nurtured you and loves you and you feel guilty for not being able to mirror that same dedication and selflessness.
Even though it’s 100% the right move for my mom and our family, I still find myself hanging onto guilt from putting my mom in a memory care facility. I feel guilty when I drop her off. I feel guilt when she calls me in tears that she wants to move back to her old house. I have to remind myself that my mom was adamant when she was first diagnosed that she wanted me to live my life to the fullest and not be a caregiver. It’s important to remember that this isn’t what my mom hoped for either.
The point is, as millennial caregivers, you’re doing the best you can. We were dealt a tough hand. Life happens. Your life is happening now. Give yourself a break. Let go of the guilt.
#3. Realize that Friendships Evolve
When I first became my mom’s caregiver, I had a difficult time relating to my peers. I was in crisis mode and while my friends were worrying about weekend plans, I was worrying about getting my mom medicated and stable. At first, I secluded myself. I didn’t know how to act when I wasn’t my snarky, 20 something self. But that got lonely fast.
Friendships evolve. The friends who can’t hang, won’t. Your real friends will be there for you through the good and bad. Friendship isn’t about being happy all the time. See your friends. Lean on them. It’s okay to not feel “yourself”. Give them the credit they deserve.
#4. Get Support
Even if you feel alone in your caregiving, you aren’t. Support can come from family, friends, online or in-person support groups or even a babysitter so you can get some alone time. You may need time to vent. Don’t let it build up just because you don’t want to be known as a “Debbie Downer.” It’s sometimes hard to integrate your struggles into everyday conversations. I totally get it. I go to a therapist regularly so I can talk through it all.
Just because you are physically capable of juggling it all, doesn’t mean you should. It’s not healthy. Try to delegate tasks to other family members and ask advice. People want to help you. It’s your responsibility to tell them HOW.
#5. Accept Your Parents for Who They Are NOW
Sometimes I get so caught up mourning the loss of who my mother once was that I miss out on who my mom is now. Of course it’s natural to grieve, but you also need to accept this new person. This is especially difficult for degenerative diseases as, by nature, your loved one’s needs are constantly changing. You’re constantly needing to reevaluate who they are.
Although my mom has difficulty dressing herself, she also loves my kids fiercely. She may not know why she lives in a memory care facility, but she remembers tiny details of my childhood. Although we aren’t in an ideal situation, I’m a luckier person to have her in my life.
Mental health issues can strike at anytime, without warning and with little regard for your responsibilities. I knew my husband suffered from panic disorder when I married him. However, it wasn’t until a particularly stressful period at work that it became apparent that I was yet to see the worst of his condition.
By this point, we had a son, and it was clear he couldn’t understand what was happening to his daddy. Fortunately, children are smarter than we give them credit and can quickly adapt to take charge of situations, as long as they feel comfortable.
I was hesitant about explaining mental health to my son, but, since we had the conversation, he’s my biggest helper and an incredible support to his father.
If you’re struggling to broach this difficult topic, here are a few pointers:
Don’t Baby Them
Children see a lot more than we realize. Attempting to keep your kids in the dark if they have a mentally ill family member is a terrible tactic. Not only will they still see the difficulties, but they also won’t understand them, and this will quickly turn to fear.
Being as honest as you can with your child prevents them from feeling isolated. Particularly if the sufferer is a primary care figure; it’s actually easier to cause long-term trauma by shutting them out of the situation than by exposing them to it. It’s easy to feel like they’re too young to experience these sorts of things. However, knowledge is power – even when you’re little – and understanding strange behavior will allow them to still feel safe and in control.
However, there is a slight caveat to point one. Mental illness is complex, and most children’s brains aren’t developed enough to understand the intricacies of brain function. These means it’s important to find a relatable metaphor and description.
A personal favorite in our family is the ‘Hulk’ metaphor. As panic can quickly turn into rage and mental illness sufferers can lose their cool quickly, having a way to explain this to our son without him feeling at fault quickly became essential. The Incredible Hulk is a superhero who turns into a raging monster when he’s angry. This comparison is not only relatable and understandable, but it also comes from the child’s world. Using metaphors based on cartoons and comics can be an incredibly useful tool to help them see what having a mental illness means.
If you’re in this situation, it’s common to worry about information from other sources. While you can control how you address things with you child, there are many out here offering less-than-helpful information. However, here is another area where you child might surprise you.
Especially if they’re older, allowing their own research will let them feel like they can take control and will significantly increase confidence. Just to be sure to engage in discussions about their findings and encourage open dialogue. If you’re worried about internet safety, you can also install parental controls or a proxy service to protect them from online criminals.
Ask Their Feelings
The most powerful dialogue about mental health goes two ways. It doesn’t matter how well you word your explanation, if you aren’t receptive to your child’s thoughts and feelings, they can quickly end up feeling confused or isolated.
There are a few important check-in points for children:
- When you first offer an explanation, ask how they feel about what you’ve said.
- After particularly bad and potentially frightening attacks, talk about their emotions and quell their feels
- If possible, get the sufferer to speak with them so that they can understand you can still be a ‘normal’ person and have mental illness.
- The media can offer negative views of mental health patients. If you child is exposed to this, sit him or her down and discuss how they relate it to the situation at home.
While these points are a great place to start, in reality, it will always help to talk to your child about their feelings towards mental health. Having this open conversation means you can keep tabs on their responses. Plus, they will feel more comfortable to raise their worries and fears in the future.
Give Them Responsibility
Anyone who cares for a mental illness sufferer will know how quickly you can feel powerless. If you sincerely love someone, it’s difficult to see him or her in emotional distress. This lack of control can be one of the hardest elements to being a caregiver.
Although often overlooked, this fact is still true for the children and young relations of the mentally ill. They want to do what they can to help with the situation, so allowing them a small level of responsibility is key. Show them the medication schedule, and ask them to help remind you, or identify a small job they can do if there’s a particularly severe episode. This could be as simple as getting some pillows or a blanket or making a cup of water. Not only will it help their confidence with the situation, but it will also stop them from panicking if things get tricky.
Many put off addressing mental health issues with their children because they feel it will be too difficult. However, this is often not the case. Young people are incredibly resilient and will continually surprise you in their empathy to mental health patients. If you’ve been delaying this talk, follow these tips and ensure your child has a clear picture of their role in the situation.
Caroline Black is a writer and blogger who has become a primary caregiver for her sister. She writes about health, as well as sharing her experiences and insight with mental health and how it affects those around them.
By Jay Hancock
As a drug salesman, Mike Courtney worked hard to make health care expensive. He wined and dined doctors, golfed with them and bought lunch for their entire staffs — all to promote pills often costing thousands of dollars a year.
Now he’s on a different mission. When Courtney calls on doctors these days, he champions generic drugs that frequently cost pennies and work just as well as the kinds of pricey brands he used to push.
Instead of big pharma, he works for Capital District Physicians’ Health Plan (CDPHP), an Albany, N.Y., insurer. Instead of maximizing pill profits, his job is to save millions of dollars by educating doctors about expensive prescriptions and the stratagems used to sell them.
“Having come from big pharma, I do really feel my soul has been cleansed,” laughs Courtney, who formerly worked for Pfizer and Johnson & Johnson. “I do feel like I’m more in touch with the physicians” and plan members, he added.
Costs for prescription drugs have been rising faster than those for any other health segment, marked by high-profile cases such as the reported 400 percent increase for Mylan’s EpiPen and 5,000 percent spike for Turing Pharmaceuticals’ Daraprim.
Health plans and others paying those costs are fighting back. Many have tried to give doctors academic research on pill effectiveness or simply removed high-cost drugs from coverage lists.
Consumer groups and medical societies have tried to spread the word about expensive drugs. Startup GoodRx lets patients compare retail prices online.
CDPHP is one of the few insurers to have taken the battle against pricey pills a step further. It is recruiting across enemy lines, hiring former pharma representatives and staffing what may be a new job category: a sales force for cost-effective medicine.
“Insurers are taking matters into their own hands,” said Lea Prevel Katsanis, a marketing professor at Canada’s Concordia University who specializes in the pharmaceutical industry. “They’re saying, ‘We can’t really rely on drug companies to talk to doctors about what’s cost-efficient.’”
If insurance companies can curb drug costs, premiums paid by employers, taxpayers and consumers need not rise as fast.
Two years ago, when one company increased the cost of a common diabetes medicine to 20 times what it had been a few years earlier, Courtney and five other former pharma and medical-device reps working for CDPHP knew what to do.
Valeant Pharmaceuticals had cranked up the price of one common dosage of its Glumetza medicine for lowering blood sugar to an astonishing $81,270 a year, according to Truven Health Analytics, a data firm. Meanwhile a similar, generic version can be bought for as little as a penny a pill.
Because Glumetza was on CDPHP’s list of approved drugs, the insurer and its members had to pay for it when doctors prescribed it, resulting in millions in extra costs and stinging copayments for patients.
Dr. Eric Schnakenberg, an upstate New York family medicine doctor, was shocked when patients began complaining about what he assumed was an inexpensive prescription. Doctors are famously unaware about the cost of the care they order, a situation exploited by drug sellers and other vendors.
While physicians’ electronic prescribing programs and even pharmaceutical guides like the Physicians’ Desk Reference contain prescribing information — some are even peppered with ads — they contain no specific information about prices. Drug sales reps who visit their offices don’t highlight high prices as they drop off free samples, and drugmakers can quietly, but substantially, hike the price of a drug from one year to the next.
“As physicians, we’re blindsided by that,” Schnakenberg said. “We get patient complaints saying, ‘Hey, I can’t afford this,’ and we say: ‘It’s cheap!’”
After Courtney and his colleagues alerted doctors to what Valeant was up to, all but a handful of the 60 plan members who were taking Glumetza switched to metformin, the generic alternative. That saved about $5 million in a year.
Following an outcry over its practices, Valeant agreed last year to raise annual prices by no more than single-digit percentages, the company said through a spokesman. But such hikes could still outpace the inflation rate.
Using ‘Those Powers For Good’
Cardiologist John Bennett got the idea to hire pharma reps a few years ago, after he became CDPHP’s chief executive. He knew reps are smart, genial and motivated. Overhiring by pharma had put many back on the job market.
His sales pitch to them, he says half-jokingly, was: “You know everything they taught you in big pharma? How would you like to use those powers for good?”
Pharma companies spend billions on TV ads, doctor blandishments and expensive salespeople to keep prescriptions flowing.
Pfizer, Johnson & Johnson and other sellers responded to critics a few years ago by restricting gifts of entertainment, coffee mugs and some meals. But the industry’s ethics code still allows lavish consulting contracts for doctors and sponsorship of physician conferences as well as meals for doctors and their staffs who listen to an “informational presentation” from sales reps touting expensive pills.
“When those products go generic, nobody’s promoting them anymore,” Courtney said. Generics makers lack big marketing budgets. CDPHP’s remedy: The insurer promotes generics with its own reps.
“It’s a great idea,” said Alan Sorensen, an economist at the University of Wisconsin who has studied drug prices. “Even a small moving of the needle on their [doctors’] prescribing behavior can have a pretty big impact on costs.”
At first the team concentrated on educating doctors about cheaper alternatives to Lipitor, a widely prescribed cholesterol-lowering medicine, and Nexium, for stomach problems. That saved around $10 million the first year, much in the form of copayments that would have been owed by plan members.
Recently the plan has focused on Seroquel, a branded antipsychotic that costs far more than a similar generic. Switching to the generic saves $600 to $1,000 a month, estimates Eileen Wood, the insurer’s vice president of pharmacy and health quality.
CDPHP’s repurposed reps have helped keep the insurer’s annual drug-cost increases to single-digit percentages, whereas without them and other measures “we would certainly be well into double-digit” increases, she said.
Educating doctors about drug costs is part of a larger push for “transparency” in an industry where Princeton economist Uwe Reinhardt says consumers face the same experience as somebody shopping in Macy’s blindfolded.
Current research by the University of Wisconsin’s Sorensen finds physicians with access to data about drug prices and insurance coverage are more likely to prescribe generics.
That gives Courtney and his colleagues a fighting chance, even if, he said, “we don’t have the freewheeling, unlimited green Amex card like I did back in the day.”
KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.
Caring for seniors requires knowledge, skills, and stress resistance. Leaving our loved ones in the hand of others requires trust. It is my honor to talk to Jacqueline Thomas, a professional caring staff who uses her old phones to build a team with the families of the people she cares for.
Her stories have testified that creating and sharing a video connection is an open door that fosters trust between caregivers, patients, and their family members. Let’s take out our old phones lying in the drawers, bring them back to work, and make caregiving a bit easier.
I have been working as a caregiver in nursing homes for years. This job is rewarding because I can care and provide comfort for people who can’t be taken care of at home anymore. However, it comes with many different challenges.
Some of my patients (termed as “consumers” in our service) are non-verbal. They have problems expressing their wishes as well as problems. Even though I am supposed to be available at all times during my shift, I do sometimes have to go to the kitchen to prepare for food, for example. I have learnt that anything can happen in a second in my job, so I need all the help I can get. Alfred is my recent discovery. It is an app that turns spare phones or tablets into cameras.
Just sign in with Gmail, and I can watch the patient/consumer or receive Motion Detection notifications even when I am somewhere else in the house.
I set a Camera Phone up in front of a Teddy bear by a non-verbal patient’s head so that I can always keep an eye on him. Lucky for us I did. When I was heating food up in the the kitchen the other day, I saw on my phone screen that he had a seizure. I quickly rushed back to his side and handled the situation. It was a close call!
It isn’t necessarily easier to take care of patients/consumers who are able to speak. Some of them refuse to communicate, so I have to observe them closely. Patients/consumers with dementia could forget where they put things and whether they ate. If they complain to their family, who in turn complain to the nursing home, it could easily cost me my job or even license.
While I installed Alfred to ensure my job security, what I have found is that it fosters trust between me and the patient’s family. Rather than waiting for them to take the initiative to surveil me, I have added them to Alfred’s Trust Circle so that they can check on the patient/consumer as well as my interactions with the patient/consumer. It makes us a team.
My patients/consumers might not get better, but I am proud to provide them with dignity and comfort. It’s great to do this with a little help from Alfred
is the founder of Alfred
, an app that allows anyone with an old cell phone to use it as a motion detected home care camera.
By Sharon Jayson
Like many peers in their 70s, Lois and Richard Jones of Media, Pa., sold their home and downsized, opting for an apartment in a nearby senior living community they had come to know well. For 13 years, they have visited Lois’ mother, Madge Wertzberger, there.
Wertzberger, 95, is in assisted living at Granite Farms Estates. Lois, 73, and Richard, 76, who have been married 56 years, moved into an adjoining building in October.
“It wouldn’t take me more than three minutes to walk to where she is,” said Lois. “I don’t have to drive anywhere to help her or to meet with her [medical] team. I’m right here.”
The Joneses are great-grandparents. Yet they’re among a growing group of seniors with a living parent, which means these 21st-century post-retirement years might well include parental caretaking. Expectations are altered amid the new reality of longer life expectancy and growing numbers of aged Americans.
“I pop in when I need to take something to her or discuss things. We see each other minimally once a week, and it can be more,” Jones said. “My youngest sister normally takes her to the doctor, but I do some sharing on that. Just because I’m here doesn’t mean I have to take her to her doctor’s appointments.”
Caregiving for an older family member is not what it was when first studied and coined as the “sandwich generation,” those people squeezed between aging parents and young children, said Amy Horowitz, a professor of social work at Fordham University in New York City.
“Now it’s the children who are on the verge of retirement or who have retired and are still having responsibility of older parents,” she said. “In New York City, I know somebody whose almost-90-year-old mother is living in the same apartment building. It becomes, how do you balance your own life?”
Lois and Richard Jones walk with Lois’ mother, Madge Wertzberger, center, at Granite Farms Estates in Media, Pa. The Joneses are great-grandparents, yet they’re among a growing group of seniors with a living parent. (Eileen Blass for KHN)
Kathrin Boerner, an associate professor of gerontology at the University of Massachusetts, Boston, discovered a recurring theme in her research on centenarians and their adult children — that is, very old parents and their elderly children. Even if their children are not direct caregivers, they still must monitor their parents’ welfare.
“With the demographics we’re looking at, I refer to it as ‘aging together,’ — the parent-child constellation will be a lot more frequent,” Boerner said.
“For a lot of people, that is the time — if you’re in good enough health — you hope for a time of greater freedom. You’re past all the other caregiving tasks and, for most people, they can dedicate to their own needs,” Boerner said. “But for those with very old parents, it just doesn’t happen.”
In her 2015 presentation at the Gerontological Society of America, she noted, “The very old are the fastest-growing segment of the population in most developed countries, with an expected increase of 51% of elders age 80+ between 2010 and 2030.” And, two-thirds of these very old have advanced-aged children, who typically serve as their primary caregiver.
“We heard things from someone like an 80-year-old — ‘I don’t have a life.’ Imagine that. You’re 80 years old, and ‘I don’t have a life because I’m caring for my mother,’” Boerner said.
Sometimes, it’s the older adult child with more health issues than the parent.
Carol Pali, 71, moved into Fort Washington Estates in Fort Washington, Pa., in October 2014, prompted by a diagnosis of multiple myeloma, a blood cancer, around the same time she retired from full-time teaching.
“It got to a point where I was in and out of the hospital all the time,” she said. “I just decided I might as well move in here, too. It’s better than having to take care of the house.”
Pali had lived in a townhouse around the corner from the community, where her mother, Peg Henrys, who turned 97 Saturday, had moved three years earlier.
“My mom moved from New Jersey to be closer to me,” she said.
Mother and daughter are in the independent-living section of Fort Washington Estates, about 25 miles north of Philadelphia.
“We get to see each other every day at dinner time, but she’s got her life here and I’ve got mine. We’re not with each other all the time,” Pali said.
“She’s in better shape than I am,” Pali said. “I had non-Hodgkin’s lymphoma before. And my mom has nothing, except she can’t hear very well.”
Fort Washington Estates is part of Acts Retirement-Life Communities, a suburban Philadelphia-based company operating continuing-care senior living communities in eight states, serving nearly 9,000 residents. Costs vary by location, type of community, occupants and contract, according to Acts spokesman Michael Smith.
Fees at Fort Washington are lower than the company average of $245,000 for the entrance fee and $2,800 a month, he said. At Fort Washington, the entrance fee starts at $140,000 and the monthly fee is $2,486. Smith said monthly fees do not increase with higher levels of care.
Theresa Perry, Acts’ corporate director of wellness services, said such parent-child arrangements are on the rise at their communities.
“They can keep an eye on Mom or Dad and don’t have to travel from where they lived,” Perry said. “It makes a big difference to them knowing the family is so close, and they can just walk over to visit.”
Jones, of Media, said she and her two sisters (one lives 10 minutes away; the other, 40 minutes away) have a weekly knitting date with their mother.
“We all knit and spend a good portion of the day with her,” Jones said of the Thursday sessions.
She also stays busy with Bible study, church services and programs featuring professors from local colleges — all on-site.
“We have joined in so many of the activities here,” she said. “We have a whole new social group. There are a lot of activities we participate in here at Granite Farms, but we haven’t given up our outside friends or activities.”
Jones said she and her husband sought to escape from the worries associated with a larger home and assume control over their future while they could. Living near her mother lets them blend caregiving with a relatively carefree lifestyle.
“We were looking to exchange responsibility for fun,” she said.
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage of aging and long-term care issues is supported by The SCAN Foundation.
Caring for a loved one who has special needs or has become ill or infirm is a big job. Not only is it physically demanding, it takes a toll emotionally, as well. It can be difficult to watch someone you love suffer through painful issues; yet for many caregivers, knowing that they can provide some measure of relief by helping them with daily activities often makes the job easier.
If you’ve cared for a loved one and had to take time off from the workforce to do so, you might be thinking about finding employment again. Now that you have experience with caring for someone with special needs or an illness, there are many paths you can take that involve helping someone.
There are some steps you’ll need to take first, however. Here are the best tips on how to get started.
Figure out your goals
It takes a special kind of person to take care of someone who cannot take care of themselves. It’s a very demanding job, and it can be difficult to perform physically if you don’t have help. Ask yourself what your goals are and think about how your daily duties might affect you. Patience, kindness, and emotional strength are all required attributes for a caregiver to have.
Do some research
Before making any decisions, do some research on the field you want to enter. Find out what it takes to become a licensed caregiver in your state and decide what area you want to focus on. If you want to provide medical care for someone, you might need a nursing degree. If you’re thinking about taking on a younger patient, you may want to consider taking some child psychology classes. If you want to provide general home care, like cooking, housekeeping and errand-running for someone who still has some independence, it’s important to know what to charge so you’ll be competitive in the market but not sell yourself short.
Talk to someone with experience
You may have experience taking care of a loved one, but providing care to someone you don’t know is a very different job. Learning their likes and dislikes, their habits and needs… it can all be a little overwhelming at first, especially if you are hired by a family who has specific guidelines for their loved one’s care. Talk to someone who has experience in the professional caregiving field and get some feedback. Don’t be afraid to ask questions and find out what they like and don’t like about their job. Again, you have options in how you can help care for someone, so finding out what this kind of job really involves firsthand may help you choose the right fit for you.
Make some contacts
Once you’re fully licensed to become a caregiver, it’s important to start making contacts in the healthcare world. Consult your local department of health services to find out if there is a registry system you can be added to that would allow clients to find you. You can also contact health insurance companies and ask about being added to their list of care providers.
One good thing about pursuing a career in care is that you have plenty of experience under your belt now, even if not formal experience. Surely this will help you as you pursue caregiving in a formal manner. It will certainly help you in any job interview scenarios.
By Jim Vogel
Jim and his wife, Caroline, built ElderAction.org after becoming caregivers for their aging parents. He enjoys sharing valuable information with seniors and their caregivers.
Photo via Pixabay by Maxlkt
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.
North Dakota’s sparse geography has long made it a natural frontier: Pioneers here pushed the boundaries of westward expansion, then agriculture, and recently domestic oil drilling. Now the state finds itself on the leading edge of a new boom that it never would have chosen: Alzheimer’s disease. Cases are climbing across the United States, and especially… (more…)
It has taken me almost 10 years to figure out that I actually have a reset button and that I’m allowed to hit it when needed! My husband has a C4/C5 spinal cord injury and as his primary caregiver for going on 10 years, along with caring physically (alone) for our almost 10 year old, I’ve hit my limit often.
However, every time I did, I pulled myself back from the brink only a little thinking it was all I needed and all I could allow myself at that time. I mean, how do you, as a caregiver, allow yourself respite time when your husband cannot take care of himself AT ALL and when your young child needs you desperately? So really, I didn’t allow myself time and mentally wasn’t in a place where I could allow it to happen. Everyone told me to take time and everyone told me I needed it and deserved it but until I believed it, it wouldn’t happen.
So hitting the reset button didn’t actually happen until I understood and accepted that I needed to do it and needed to allow myself to do it. Sure, my husband told me to take the time but again, until I (me, myself and I) allowed it to happen, it wasn’t going to happen. So now, when I know when I get close to the breaking point (I get short and angry and mean with my family), I need to totally step away from the situation.
Sometimes, the reset is a nap. Sometimes it’s a car ride around the block. Sometimes it’s a walk down the driveway. Sometimes it’s a night away if all works out as planned! But most times, it’s 15 minutes alone in my room doing deep breathing and stretching. I’d say yoga but it’s really just stretching… I sit cross legged on my dog’s bed and lean as far forward as possible and stretch my back out and breathe… I used the Headspace App to meditate for a few weeks and now, when I need the time, I can sit in my room, stretch and breathe and do a 5 minute faux-meditation.
That’s usually how I reset since while I’d love respite care, I know that I will never, ever be okay with doing that knowing my husband and my daughter need me. So if the time I have to take for myself is only a few minutes, that’s okay since I know I can calm myself down and relax and then get back in the game.
Caregivers are at risk for back injuries. That’s a fact.
People who’ve never done it might imagine caregiving is holding hands, making soup, and saying reassuring things. If only! Caregiving can be incredibly physically demanding.
Getting someone in and out of bed when they can’t assist you is a tough job and can be dangerous for both of you if you don’t know how to do it! Here are some videos with instructions on how to avoid injuring yourself or the person you’re caring for.
Here’s how to prop someone up in bed
How to change the sheets with someone in bed
Changing the diaper of an adult while they’re in bed
How to get someone out of bed
Tips on safely transferring someone from bed to a chair to the car
And if you’re feeling sore, here are a few stretches to help you get back up and running.
Tummy tucks really hurt. Doctors carve from hip to hip, slicing off skin, tightening muscles, tugging at innards. Patients often need strong painkillers for days or even weeks, but Mary Hernandez went home on just over-the-counter ibuprofen. The reason may be the yellowish goo smeared on her 18-inch wound as she lay on the operating table.… (more…)
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.
Some of us care for a mom who isn’t able to participate in a big celebration, but other seniors are able to get out and active with some accommodations and planning. Family caregivers looking after their moms can make Mother’s Day extra special. After all, these women only deserve the best in life, considering that most of them experience both financial and health issues during the twilight years. Here are a few suggestions:
To be able to wander and experience the many joys of life is a treat that’ll delight both caregivers and their mothers. Travel is a wonderful dream to achieve, especially during the retirement years. Of course, prioritizing a senior’s safety during a trip should always be practiced.
2) Learning Something New
The golden years offer a lot of opportunities for mother’s to experience. Caregivers can celebrate Mother’s Day in a productive and enjoyable manner by introducing something different from the usual. From crafts workshops to learning a new skill (such as being able to manage a blog, driving, or enrolling in a short course), the opportunity to continue learning during the twilight years will both be a fun pursuit of new knowledge and a way to help stimulate a senior’s mental health.
3) Earn Money
Another way to observe Mother’s Day is for a caregiver to help his or her mother earn some income. This can be done by checking local listings for senior employment opportunities and presenting the options to the mother. Another is through various ways to earn online, such as ads on a blog, online writing, or being a virtual assistant. Introducing the idea of how to make money even during retirement for mothers can be a great way to uplift them.
4) Spending Time with Each Other
More than anything else, seeing Mother’s Day as an event to truly spend and make the most out of the time with mom is a great mindset and focus for a caregiver to have. Perhaps this is what matters the most: considering the blessing of being able to care for a mother over the many challenges a caregiving role has.
Do you have other suggestions to include? Let us know below!
By Leandro Mueller
As the Online Content Director of FreeMedSuppQuotes.com, Leandro Mueller aims to push for awareness and promotion of the many benefits of Medigap insurance plans in the market. He hopes that his work will help boomers and retirement industry experts alike in their lives.
By Susan Jaffe
Under a new federal law, hospitals across the country must now alert Medicare patients when they are getting observation care and why they were not admitted — even if they stay in the hospital a few nights. For years, seniors often found out only when they got surprise bills for the services Medicare doesn’t cover for observation patients, including some drugs and expensive nursing home care.
The notice may cushion the shock but probably not settle the issue.
When patients are too sick to go home but not sick enough to be admitted, observation care gives doctors time to figure out what’s wrong. It is considered an outpatient service, like a doctor’s visit. Unless their care falls under a new Medicare bundled-payment category, observation patients pay a share of the cost of each test, treatment or other services.
And if they need nursing home care to recover their strength, Medicare won’t pay for it because that coverage requires a prior hospital admission of at least three consecutive days. Observation time doesn’t count.
“Letting you know would help, that’s for sure,” said Suzanne Mitchell, of Walnut Creek, Calif. When her 94-year-old husband fell and was taken to a hospital last September, she was told he would be admitted. It was only after seven days of hospitalization that she learned he had been an observation patient. He was due to leave the next day and enter a nursing home, which Medicare would not cover. She still doesn’t know why.
“If I had known [he was in observation care], I would have been on it like a tiger because I knew the consequences by then, and I would have done everything I could to insist that they change that outpatient/inpatient,” said Mitchell, a retired respiratory therapist. “I have never, to this day, been able to have anybody give me the written policy the hospital goes by to decide.” Her husband was hospitalized two more times and died in December. His nursing home sent a bill for nearly $7,000 that she has not yet paid.
The notice is — as of last Wednesday — one of the conditions hospitals must meet in order to get paid for treating Medicare beneficiaries, who typically account for about 42 percent of hospital patients. But the most controversial aspect of observation care hasn’t changed.
“The observation care notice is a step in the right direction, but it doesn’t fix the conundrum some people find themselves in when they need nursing home care following an observation stay,” said Stacy Sanders, federal policy director at the Medicare Rights Center, a consumer advocacy group.
Medicare officials have wrestled for years with complaints about observation care from patients, members of Congress, doctors and hospitals. In 2013, officials issued the “two-midnight” rule. With some exceptions, when doctors expect patients to stay in the hospital for more than two-midnights, they should be admitted, although doctors can still opt for observation.
But the rule has not reduced observation visits, the Health and Human Services inspector general reported in December. “An increased number of beneficiaries in outpatient stays pay more and have limited access to [nursing home] services than they would as inpatients,” the IG found.
The new notice drafted by Medicare officials must be provided after the patient has received observation care for 24 hours and no later than 36 hours. Although there’s a space for patients or their representatives to sign it “to show you received and understand this notice,” the instructions for providers say signing is optional.
Some hospitals already notify observation patients, either voluntarily or in more than half a dozen states that require it, including California and New York.
Doctors and hospital representatives still have questions about how to fill out the new observation care form, including why the patient has not been admitted. During a conference call Feb. 28, they repeatedly asked Medicare officials if the reason must be a clinical one specific for each patient or a generic explanation, such as the individual did not meet admission criteria. The officials said it must be a specific clinical reason, according to hospital representatives who were on the call.
Atlanta’s Emory University hospital system added a list of reasons to the form that its doctors can check off, “to minimize confusion and improve clarity,” said Michael Ross, medical director of observation medicine and a professor of emergency medicine at Emory. Emory also set up a special help line for patients and their families who want more information, he said.
The form also explains that observation care is covered under Medicare’s Part B benefit, and patients “generally pay a copayment for each outpatient hospital service” and the amounts can vary. But Ross said “this wording may be antiquated.” Medicare revised some billing codes last year to combine several observation services into one category. That means beneficiaries are responsible for one copayment if the observation stay meets certain criteria.
The new payment package also includes coverage for some prescription drugs to treat the emergency condition that brought the observation patient to the hospital, said Debby Rogers, the California Hospital Association’s vice president of clinical performance and transformation. Other drugs for that condition will be billed under Part B with separate copayments, she said.
But patients will have to pay out-of-pocket for any medications the hospital provides for preexisting chronic conditions such as high cholesterol, and then seek some reimbursement from their Medicare Part D drug plans for any covered drugs.
Yet, Ross said, most observation visits are less expensive for beneficiaries than a hospital admission if they stay a short time, which the inspector general’s report also concluded. Doctors should “front load” tests and treatment so that the decision to admit or send the patient home can be made quickly. “If you get them out within a day, they are more likely to go back to independent living as opposed to needing nursing home care,” he said.
Last summer, Judy Ehnert’s 88-year-old mother had a bad fall and broke her wrist. Following surgery, and additional complications, hospital officials told the family she would be kept for observation but she would need to go to a nursing home to recover. When the family learned what observation care meant, said Ehnert, a retired bookkeeper who lives in West Fargo, N.D., “that’s when we blew a cork.”
Then, after a few days in observation, Ehnert’s mother contracted an infection and she was admitted to the hospital. “Her care was totally the same, in the same room, with the same doctor, the same nurse.” And Medicare covered her nursing home care.
“That’s what I expected at her age,” Ehnert said. “I always thought that’s what Medicare was for.”
KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation and its coverage of aging and long-term care issues is supported by The SCAN Foundation.
Resilience. Tenacity. Strength. Toughness.
Whatever you want to call it, caregivers need it. It’s that thing about your personality where shit is exploding all around you and you just roll with it. Roll up your sleeves and get to it, every day, no matter what.
Inner strength is a decision.
There’s no trick to it. There’s no pill to take. You just decide that you’re going to do this, come hell or high water. And then you do it, no matter how hard it is.
Put one foot in front of the other.
We all take it one day at a time, one moment at a time. Fear, despair, anger — emotions are irrelevant when you’re busy. Acknowledge your emotions, see what’s behind them, and then move past them.
Know why you’re here.
Everything I do as a caregiver has a reason for it. I’m here because I choose to be. Are you doing this to show your love and devotion? Are you doing it because you’re living your values? Are you doing this because you love helping people? Know your reasons and remember them when things are tough.
It will always be hard.
Caregiving gets easier, but it’s never easy. The harder I push myself, the more I can do. I’m stronger than I can possibly imagine and I know that. We all have a source of strength — cultivate it.
Create a bubble.
I don’t care what other people are doing, I care about what matters to me. By surrounding myself with a community of people who put community first I save myself from the opportunity to feel jealous about other people’s lives. I’m committed to my life as a caregiver and I don’t want to waste time on a life I’m not living.
No matter how strong you are, we all have our breaking point. Respect it. You can’t go 110% all the time. It’s okay to give 50% if that’s what you need to do to keep moving forward. You can’t sprint forever.
You need highs and lows.
Being on high alert all the time will kill you. Our bodies aren’t designed to be hyper vigilant at every moment, it wears us out. There are boring moments, even in the ER and the ICU. A lot of them. Cherish them. Allow yourself to be bored.
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.***