I once tried to make a list of the things we respond to from the day we are born, and one of the first ways we bond with a parental figure is by communicating our feelings through tears or laughter. Mother and father then have to listen carefully to how we make ourselves understood so they can react accordingly. A loving parent usually ends up able to interpret each nuance in their child’s sounds and demeanor.
Later, when we learn to express ourselves with words, we have a deep need to share each new experience with someone who cares. It may be a parent, a schoolteacher, a grandparent, a friend, or all of the above. But one person’s close attention to our joys, our sorrows and our endless questions are a vital part of our growth—especially while every little happening in our lives is still the most exciting thing in the world to us.
As we reach adolescence, it becomes even more confusing if there is no one there for us to relate our concerns to about the emotional and physical changes taking place. How many troubled teenagers say that all they really miss is a parent or mentor to spend time with—someone who will take the time to listen.
Loneliness and fear take root early on in our lives when we feel we have no one to talk to. And in the twenty-first century, when both parents often have fulltime careers, it becomes increasingly difficult for a mother and father to find the time to listen to what is happening in their children’s lives. Emotional issues are usually the first to be put on the back burner and are considered “normal” for that age.
In my grandparents’ day, before the world was filled with high technology, families lived in a home where the children were usually born and where there was always a place for the older generation to live out their lives. The cycle of birth and death was not a mystery to young people who were active participants in all aspects of family life.
Now the aging process of a beloved grandparent is often, at best, kept at a distance while a staff of strangers takes care of them in what is now called “assisted living.” In these facilities all responsibility is taken off the family’s shoulders as the necessary level of care is upgraded with time.
This situation enables the next generation to ignore the final stages of life that the older person goes through and does not give the younger ones the benefit of the wisdom, love, or connection to those responsible for their heritage. And so the charade continues, while we permit ourselves to hide our heads in the sand and pretend that the impersonal care and feeding of those who raised us are adequate substitutes for our love.
The tragedy of abandonment of the ones who have nurtured us, who desperately need our love at the end of their lives, was overwhelmingly shown to me when I went to an assisted living home in New York City called Atria, where my old nurse Lucy, who had cared for my brother and me when we were born, was living.
When I arrived, I was told that Lucy was at a doctor’s appointment with her aide, so I went into a comfortable little sitting room to wait for them to come home. When I sat down, I noticed an elderly lady in a wheelchair talking on the phone with her son, pleading with him to come visit her. I could tell she was speaking in the most diplomatic way possible, so as not to anger him.
At the end of their conversation, I nearly fell out of my chair when I heard her say, in the sweetest possible way, “But, darling, you only live a block away.”
I have found that even when human beings have been forced to spend their whole lives in a state of lonely desperation, at the end, the door to their emotions is always ready to be opened. Although it may be only days or even hours before death that they find that loving ear, the deafening quiet of a lifetime can be erased forever in those last moments. It is never too late to make the connection, especially when it is a connection born of love.
I still remember the days when my parents chose my wardrobe. They paid for my clothes and therefore I had to wear what they wanted. Needless to say, their selections were less than fashionable, resulting in me getting a healthy dose teasing on the playground. This helped me learn a valuable lesson: when others get to make decisions on your behalf, it’s really hard for them to set aside their own tastes and motives. I call this the Decision Maker Bias.
Many decades later, I now find myself heavily involved in my parents’ care and often have to decide what’s best for them. Should they move into a facility or live on their own? Do they need a caregiver, or perhaps even a geriatric care manager? Should they downsize or keep living in their house with a stairway? I constantly catch myself forming strong opinions on each of these topics, but after some introspection I realize that there is a trace of my own interest in them. I genuinely want my parents to be happy, so I created a framework that helps me spot decisions where I might be affected by the Decision Maker Bias.
We often try to get our parents to move closer to ourselves, thinking that they will benefit from us being able to spend more time with them. However, we also have to consider the cultural impact on our parents’ lives. Would a culturally conservative 90 year old from the Midwest feel at home near Berkeley, CA? Will they be able to connect with their neighbors, and will they find a local church that fits their needs? While it’s true that we might be seeing them on weekends, they may experience isolation and depression on all other days of the week. Also, their old friends and neighbors they leave behind are often restricted in their mobility, making it very hard to see each other again. When relocating an elder, we have to remember that this is more traumatic to them than we can imagine.
Safety is the cornerstone argument in almost all elder care discussions; we use it to downgrade houses, move our parents to assisted living facilities, veto long trips and outdoor activities, etc. But what we often forget is that money can buy safety – you can hire caregivers, install home safety equipment, use smart monitors, etc. In other words, the question should not be: “Is it safe?” but instead: “Can we afford to make it safe?” You won’t always be able to say yes, but be aware that being an overprotective adult child is not always in the best interest of your parents – sometimes the extra effort and cost it will take to keep them safe might be worth the happiness they’ll get out of their wishes for autonomy and independence coming true.
I don’t believe that this is happening between me and my parents, but I’ve certainly encountered it as part of my work at Kindly Care – as caregivers and elders spend a lot of time together, inevitably they start forming strong bonds which can make the adult children jealous. Particularly, the topic of oversharing sensitive family stories seems to come up a lot. Caregivers are in a difficult spot – as a companion, a part of their job is to be a great listener, but not all topics are good for their job security. Adult children can get suspicious that the caregivers are being noisy, and it’s hard to determine who initiates such conversations. What’s clear in those situations is that the adult children face the Decision Maker Bias: their hurt feelings can hinder their parents’ ability to bond with their caregiver.
When encouraging my Mom to be more active, I usually suggest that we go for a walk. I just love the outdoors, and it’s one of my favorite ways to bond with her. However, I recently read in the New England Journal of Medicine that dancing trumps all other recreational activities when it comes to mental acuity in aging. Well, dancing is my least favorite activity, and now I face the same dilemma that parents face when helping their kids decide which sports to pursue – should I encourage something that we’ll both enjoy? This just reminds me once again that our personal taste has a real impact on the people we care for.
Are there any other areas where you can spot the Decision Maker Bias? Leave them in the comments so that we can all be more aware, and get better at realizing our bias when we make decisions on behalf of the ones we love.
Igor Lebovic is the CEO of Kindly Care, a self-serve care management platform that makes it incredibly simple to privately hire caregivers without having to worry about sourcing, safety or compliance.
Follow Igor Lebovic on Twitter.
Featured image: Roman Nerud / Shutterstock.com
When it comes to eldercare, America is facing a disconnect between fantasy and fact. That’s the theme for the new book Eldercare Confidential: Cautionary Tales for Adult Caregivers and Caretakers of Parents and Spouses.
“We all have this idea of an eldercare Shangri-La, where our parents can live and have their every need taken care of,” said the book’s author, Chris Cooper. “We all think that this care home will be funded by the government and that we will be relieved of heart-wrenching caregiver decisions.”
Unfortunately, that place doesn’t exist, Cooper said.
“It’s the Shady Acres myth, and even if it did exist, most Americans couldn’t afford it since the government doesn’t generally cover expenses for long-term care.”
That leaves caretakers and caregivers with the decision-making for their loved ones. Eldercare Confidential was written for those caregivers and caretakers—the adult children and spouses thrust into the role of fiduciary—or steward—for loved ones. The decisions they have to make can be stressful—even debilitating, said Cooper.
“That’s why I wrote Eldercare Confidential. There’s no other book like it on the market. It outlines the six major issues confronting these caregivers and caretakers—what I call the Six-Headed Eldercare Beast.”
Those potential pitfalls range from money, medical and psychological mistakes, to social, environmental and legal mistakes.
Cooper knows how vital this information is from experience. As a professional fiduciary licensed with California, he works with seniors, disabled individuals and others who can’t manage their affairs on their own. He has seen the sometimes disastrous mistakes that people have made because they weren’t prepared for their new role of taking care of Mom and Dad.
“Forewarned is forearmed,” Cooper said. “I’ve given straight talk and practical guidance to navigate those challenges.”
Cooper said his entire career has been about advocating for those who can’t help themselves. In addition to being a professional fiduciary, he founded Eldercare Advocates, which provides geriatric care management and long-term-care consulting, as well as Chris Cooper & Company, an independent, fee-only Registered Advisory firm based in San Diego and Toledo. He is enrolled to represent clients before the IRS and in fair hearing processes before the Department of Health and Human Services at the state level.
“In short, I help people who really need someone to stand by them and support them. That has been my responsibility—and pleasure—my entire career,” he said. “I’m proud that I get to continue this mission with my new book.”
Chris Cooper is a professional fiduciary licensed with California and a national certified guardian with the Center for Guardianship Certification. As a professional fiduciary, Chris works with seniors, disabled individuals and others who can’t manage their affairs on their own. He is the founder of Eldercare Advocates, which provides geriatric care management and long-term-care consulting. Chris has established the fee-only financial planning firm Chris Cooper & Company in Toledo, Ohio, and San Diego. He regularly appears on both local and national news shows and is quoted in newspapers and magazines nationwide. For additional information, please visit his website at chriscooper.com.
Learn more about Eldercare Confidential at chriscooper.com.
The other day I stopped by my dad’s place and caught the home health aide yelling at him.
At first I was livid. How could she treat him that way? She’s here to keep him safe and take care of him and she was clearly failing at that. Yelling at someone with dementia is only going to agitate them and make the situation worse. Don’t they train home health aides?
And then I stepped back. Because, well, I’m not proud of it, but I’ve yelled at my dad, too.
I realized I was about to yell at her for yelling at my dad.
I know it’s not right. I know he isn’t responsible for his behavior. I’ve read all the advice, watched all the videos, and know what I’m supposed to do. But following the advice is so much easier said than done.
I know what I’m supposed to do, but I don’t always do it.
My first instinct was to fire her immediately and call up her company to complain. But that’s not what I did.
Instead, I asked her to finish what she was doing so I could talk to her. We talked about what I saw and I told her I understood how frustrating taking care of my dad can be, but that obviously what I heard wasn’t acceptable. She was so embarrassed and apologized. We talked about what had happened to get her worked up and swapped ways to keep our cool.
It felt like a bonding moment. I hope I’m right and that this won’t happen again. Hopefully this will mean my dad will get better care from someone who knows I want to work with her, not against her. Someone who sees her as a real person, working just as hard as I am.
Music plays a significant role in nearly everyone’s life, but for some people it represents much more than an invitation to dance or a soundtrack for the morning commute.
Researchers have found that music therapy provides a diversion from negative feelings and helps manage the pain of not only adults, but of children with developmental, physical, behavioral, and neurological disabilities.
It also increases range of motion and motor skills, and in some cases is a replacement for medication. In short, its therapeutic uses are many.
“Music is invaluable to people with special needs, allowing them to express themselves non-verbally,” says Travis Perry, a music teacher for more than 35 years and inventor of ChordBuddy, a device that makes guitar-learning easier for anyone – including those with disabilities.
“Veterans can use music to help cope with PTSD as well as other physical injuries. Senior citizens can learn to play the guitar, which helps build hand strength.”
One recent study showed that music therapy can even help children cope with routine immunizations, making them less stressed – and their parents less stressed as well.
While music therapy is known to be fruitful for the person needing therapy, the results also can be a gratifying for the teacher. Perry says he’s found it especially satisfying to teach the guitar to autistic children, who can be challenging but ultimately rewarding pupils.
In fact, a small number of people with autism are musical savants, according to the American Music Therapy Association, but all benefit from music therapy interventions to enhance their social, communicative and motor skills, among other needs.
Generally, children with autism aren’t able to make what would be considered a pleasing sound on the guitar without some assistance. Perry uses his invention to help them. Instead of positioning their hand into the correct chord positions – often tricky for even able-bodied learners – they can just press a tab that results in a clear, strong chord sound.
Perry, who has appeared on the popular TV show Shark Tank, didn’t actually have music therapy or people with special needs in mind when he invented ChordBuddy. He was trying to help his daughter learn to play and her frustration became his inspiration.
“When learning an instrument, it’s important to have success right away, and that can be difficult to do with the guitar,” Perry says. “Most people give up within the first couple of months and the guitar ends up in a closet. That’s why I’m so excited when I know I’ve been able to help a special-needs child, a veteran with PTSD or a senior citizen with arthritis make music.
“You realize the odds they’ve had to overcome, both with the usual hurdles to learning and their personal difficulties, and that’s very fulfilling to me.”
Travis Perry has been a music teacher for more than 35 years and is the inventor of ChordBuddy. His invention was showcased on ABC’s Shark Tank. He regularly makes appearances and speaking engagements at schools, and donated his invention to various charities including The Wounded Warriors Project.
One benefit of the increasing life expectancies for Americans is that more people have bonus years for enjoying the company of their aging parents.
But all is not rosy. Those extended years also boost the odds that parents could go broke or suffer from dementia and be unable to make financial decisions for themselves.
That can leave adult children perplexed about when and whether they should step in and find out what’s happening with their parents’ money, says Carolyn Rosenblatt, a registered nurse and elder law attorney.
“Unfortunately, it’s not always easy to have those conversations,” says Rosenblatt, co-author with her husband, Dr. Mikol Davis, of The Family Guide to Aging Parents and Succeed With Senior Clients: A Financial Advisors Guide To Best Practices.
“Some stubborn parents just refuse to talk about their money. No matter what their adult children say to them, they put it off, change the subject or tell their children it’s none of their business.”
Of course, many adult children aren’t in any particular hurry to broach the subject either, says Davis, a clinical psychologist and gerontologist.
“They have their own discomfort about it and procrastinate,” he says. “Then a crisis comes up and no one has any idea what the parents have or where to find important documents.”
But Rosenblatt and Davis say it’s critical that these conversations take place so that the offspring can gather information about such subjects as the parent’s income and expenses, where legal documents are kept, and what kind of medical or long-term-care insurance the parent might have.
The success of these conversations often comes down to how you approach the subject, Rosenblatt and Davis say. They offer a few tips:
End the procrastination by picking a date for the talk.
Make an appointment with yourself to bring up the subject at a specific time. An opportune time to schedule this is after a birthday, a family event or a holiday where other family members are together who may share in the responsibility for the aging parents in the future.
Tell your parents you understand and respect their reluctance to discuss their finances. You can even make the conversation about yourself rather than about them. Say that you’re concerned that if something went wrong, you would be completely lost as to how to help them.
Address their fears head-on.
Let them know you understand they are worried that if they talk about their finances their independence might be taken away. You might add that you want them to maintain their independence as long as possible and you’re willing to help accomplish that, but you can’t do it without the correct information.
“Getting past an aging parent’s fear about talking about finances can be daunting,” Rosenblatt says. “But a well-planned strategy for approaching the subject will give you your best chance.”
Carolyn Rosenblatt and Dr. Mikol Davis are co-authors of The Family Guide to Aging Parents (www.agingparents.com) and Succeed With Senior Clients: A Financial Advisors Guide To Best Practices. Rosenblatt, a registered nurse and elder law attorney, has more than 45 years combined experience in her professions. She has been quoted in the New York Times, Wall Street Journal, Money magazine and many other publications. Davis, a clinical psychologist and gerontologist, has more than 44 years experience as a mental health provider. In addition to serving his patients, Davis creates online courses and products to assist professionals and the public with understanding aging issues. Rosenblatt and Davis have been married for 34 years.
I don’t want to stop being a caregiver, but I think I’ve reached that point where I need respite.
I dreamt I murdered my mother last night.
It’s true that I’ve been feeling really exhausted lately. More than just physically tired, really exhausted in the depths of my soul. But I had no idea how in need of a rest I really was.
That’s how caregiving is. Not taking care of her isn’t an option, so I just keep going, no matter how exhausted I am. I have so many things I need to do for me, for us, but what can I do? She needs me more. She can’t be alone at all, so if there’s no one else to watch her I’m on duty.
I would never harm my mother. I love her dearly, beyond words.
But lately I’ve started thinking those things. One day, after her passing. I’ll do this. I’ll do that. One day, when I have free time again. One day, after this list of chores is finished. One day, after my mother is gone from this world.
And I guess I need to take care of myself before that day.
I don’t really want her to die. I want her to not be sick. I want her to be well again. I want us to get lunch, take her dogs for a walk in the park, giggle over what we might buy at the mall this weekend. I want her to not be dying.
Every day it feels like part of me is dying. Or already dead. One foot in front of the other, the next task on the list. What does she need? What will she need? I’ve forgotten myself.
I’ve forgotten myself for too long.
This is a wake up call.
Caring for a loved one living with diabetes is quite a responsibility and when it comes to the approximately 29.1 million people living with diabetes in the U.S., it’s important to know the types of complications your loved one may face as a result of the disease.
What many people may not know is that diabetes can result in diabetic foot ulcers. Healogics, Inc. encourages those living with diabetes and their caregivers to know how to take good care of their feet.
Healogics is a wound care services management company, putting patient care at the forefront of everything we do. With nearly 800 Wound Care Centers® across the nation that are part of the connected network of outpatient centers, academic medical centers and other post-acute sites, we offer an evidence-based systematic approach to advanced wound care treating an underserved and growing patient population.
Twenty-five percent of people living with diabetes will eventually develop a foot ulcer due to diabetic complications and foot ulcers precede 85 percent of lower extremity amputations in patients with diabetes. This disease can also cause heart disease, stroke, lack of circulation and feeling in the lower limbs and other complications which can result in hard-to-heal wounds.
The fear of losing a limb is very real for people living with diabetic foot ulcers. Healogics offers hope to these individuals with longstanding (chronic) wounds through data, advanced wound care therapies like hyperbaric oxygen treatment, and access to wound care specialists who are passionate about finding a solution that will work for each individual patient.
Healogics mission is to share our wound care expertise with every patient who could benefit, wherever they are, and by the best means available. With nearly half of our patients living with diabetes, it’s important to talk about how the disease affects wound healing and the preventive steps patients and their caregivers can take to avoid complications. Healogics offers the following tips for proper foot care:
- Get comprehensive foot exams each time you visit your healthcare provider (at least four times a year)
- Perform daily self-inspections of the feet or have a family member assist
- Clean toenails and take care of corns and calluses on a regular basis
- Choose supportive, proper footwear (shoes and socks)
- Improve circulation by eating healthy and exercising on a regular basis
- Stop smoking immediately
It’s important to seek help from wound care experts. Healogics has a network of more than 4,000 providers across the country who receive ongoing advanced wound care training, and in 2015 alone saw approximately 285,000 new patients.
The team at Healogics has a true passion and enthusiasm for wound care that can be felt from the first moment you walk into one of nearly 800 Wound Care Centers. Our teams work day in and day out to ensure patients return to a great quality of life, and have the opportunity to enjoy the people and hobbies they love most.
Dr. Scott Covington, MD, FACS, CHWS, Chief Medical Officer for Healogics
Dr. Scott Covington is the Chief Medical Officer for Healogics. Certified by the American Board of Surgery and a fellow in the American College of Surgeons, Dr. Covington was founder of the first multidisciplinary wound center in North Carolina’s Wake County. In addition to an extensive clinical experience in wound care, Dr. Covington is a Certified Hyperbaric and Wound Specialist (CHWS) with the American College of Hyperbaric Medicine, representing a dedication to the highest standards and achievement in wound care with an advanced level of specialization in hyperbaric chamber operations.
Dr. Covington lectures frequently throughout the United States on wound care, and serves as an industry advisor on wound-related issues. He is a member of the Wound Healing Society, the American College of Hyperbaric Medicine and the Undersea & Hyperbaric Medical Society.
Dr. Covington completed his undergraduate and medical school education at the University of North Carolina, Chapel Hill, and was trained in General Surgery at University of Texas, Houston.
Headquartered in Jacksonville, Fla., Healogics is the nation’s largest provider of advanced wound care services. Healogics and its affiliated companies manage nearly 800 Wound Care Centers® in the nation and saw approximately 285,000 new patients in 2015 through a connected network of partner hospitals and Wound Care Centers, academic medical centers, and other post‐acute sites. Healogics utilizes an evidence‐based systematic approach to chronic wound healing to treat an underserved and growing patient population. A fund managed by Clayton, Dubilier & Rice, a private investment firm, is the majority shareholder of Healogics. For more information, please visit www.healogics.com.
Plenty of us are happy to see Obamacare go. It was too expensive, too confusing, and forced us to find new doctors.
You have a new chance to build something great. To save lives and help Americans secure their futures. Far too many people go bankrupt for their health.
Here’s what I’d like Trumpcare to include:
Insurance covered in-home care
How many of us have put careers on hold — or ended them early — because we can’t afford to pay out of pocket for home health aides? How many of us are forced to put loved ones in nursing homes because we can’t get the support we need to keep them at home?
Let’s change that. Help us keep caregivers at work and keep our loved ones at home.
Lower monthly premiums
The Affordable Care Act was not affordable for most of us! We need realistic health insurance costs — ones that actually reduce the amount we’re paying.
Lower copays and medication costs
American medication costs are higher than most of the world — are we subsidizing people in other countries? We need you to defend and protect Americans by making sure we pay for quality medications — not lining the pockets of conglomerates.
More tax credits for caregivers
We get refundable tax credits for childcare, why not eldercare?
Family caregivers should be able to deduct expenses like a business. Why aren’t more medical expenses deductible?
Employees get two weeks of paid vacation a year. Family caregivers don’t. Family caregivers are “on call” 24/7 — that’s a recipe for disaster. Everyone wins when we support family caregivers. Family caregivers are saving insurance companies and the government billions of dollars on nursing home care — we deserve two weeks off a year.
Social Security credits
I’m working hard every day as a caregiver. It’s insulting to think I’ll be denied Social Security benefits later. I’m working for the insurance companies — saving them from having to pay professionals for the care I’m providing. Shouldn’t they be paying to support my future?
Make programs nation wide
The help I get access to in one state is completely different from another state — or county, or town! Trying to make sense of it all is maddening. We need a single, nationwide system of caregiver support. Let me spend time taking care of my loved one, not wasting time with paperwork.
Samantha K. Thompson
My mother won’t die.
I know, it’s awful to say. I don’t particularly want her to die, but it’s inevitable. She’s dying. She’s been dying. I can’t change that.
The problem is that she won’t let go of the dying part and move into the next phase.
Dying is an awful, awful process.
If you’ve ever seen someone who’s dying, you know what I mean.
There’s nothing I can do to really make her comfortable. Her body is worn out.
It’s bone against bone. Paper-thin skin. Everything aches.
She’s too weak to do anything.
But still she persists.
Yes, we both said our vows. But how many of us break them? Most of us, at one point or another.
Would he do this if our roles were reversed? Absolutely not. He’d be out of here in a minute.
He was cheating on me when his spine was crushed in a car accident. I have no idea where he was going that afternoon. He was supposed to be at work. It could have been a work meeting, a lunch time errand, whatever. But obviously I’m going to believe it was to meet her.
I had just found out, but hadn’t let him know I knew yet. I was deciding what to do; deciding if I should leave him or not.
And then I got the phone call.
It’s just assumed that I’ll take care of him. No one asked. I’m not sure how I would do it, though. I’m told it’ll take months for his disability to through. It’ll be years before we see any money from the lawsuit, if we ever get anything. I’m out on FMLA for now, but we can’t survive without an income. We were just barely getting by before.
I try not to think about the medical bills that are accumulating at this moment.
They keep talking about how they’ll be sending him home with me once he’s stable. As if I should be excited. I wasn’t sure if I wanted my husband home with me, but this isn’t really my husband. He’s like an ornery child. The personality changes could be temporary or permanent. He could regain the ability to do certain tasks on his own, depending on the severity of his TBI and how much his body heals.
This is not what I want for my life.
Before the accident my friends were telling me he didn’t deserve me. That I should pack up my bags and go. Or kick him out and fight him for the house in the divorce. Now those same friends are acting as if I should end my career and spend the rest of my days wiping his ass and fetching things for him. As if that was God’s plan for me.
Is it even an option to say no? How will I support us if I have to be here with him around the clock? Where will we live once we declare bankruptcy? What will happen to him if I leave.
It’s funny how once someone gets themselves smashed up they are made a saint. No one can say a bad thing about him now. But I will. He was a terrible husband.
And I don’t want to give up my life for his.
Just as we all made plans about whether we wanted to go to college, what college we wanted to go to, and how we would pay for it, so too, as we age, we need to plan for retirement and beyond, when that time comes to pass. Long-term care and, ultimately passing on, is an inevitable part of life, and coming up with a game plan can make a world of a difference.
Senior Planning Services, a NJ-based company dedicated to assisting seniors and their families through the difficult Medicaid eligibility process, shares some important long-term care and end-of-life planning know-how.
What are Medicaid ‘Countable Assets’?
There are many assets that are included in Medicaid ‘countable assets’, meaning, assets that Medicaid will count towards the individual’s eligibility. Eligibility is determined state by state, and it would be beyond the scope of this article to cover each individual state, but here are the general guidelines of what assets may be counted:
- Checking accounts
- Savings accounts
- CD accounts
- Money market Accounts
- Mutual funds
- Vacation homes
- Life insurance policies with a face value of $1500 or more
What are Medicaid ‘Excludable Assets’?
There are many assets that are Medicaid exempt and do not count towards Medicaid eligibility. Here’s a list of some common ones:
- The primary residence (in some cases)
- One vehicle
- Personal possessions
- Irrevocable Prepaid funeral
- Burial plot fund
- Special needs trust
- Holocaust reparations payments
- Life insurance policy with no cash value or a face value of less than $1500
Irrevocable trusts that can help you
As mentioned, an irrevocable trust fund is considered ‘excludable assets’ for Medicaid eligibility. An irrevocable trust fund is one that cannot be revoked even by the creator of the fund, the “Grantor”, and the funds are considered inaccessible and are therefor not ‘countable assets’.
This type of fund is as opposed to a revocable fund, where, as the name suggests, can be rescinded or changed by the grantor, and as such, the assets are considered ‘countable assets’ for Medicaid eligibility. It is important to note that after the death of the Medicaid recipient, any funds remaining in the fund will need to be relinquished to fund any Medicaid payouts.
Now let us discuss the details of some of the trust funds that we mentioned:
Prepaid funeral trust: It is important to set up an irrevocable fund for funeral expenses, for several reasons;
- So the funds will be available when the time comes and the funeral expenses will not fall on one’s loved ones to shoulder. (In certain instances, in some states, government assistance is available to cover a very basic funeral.)
- One gets to choose the type of funeral and burial arrangements they desire.
- The funds that are designated for this specific purpose will not hinder one’s Medicaid eligibility for long-term care.
Special needs trust: If the Medicaid recipient has a special needs child, they can set up a special needs irrevocable trust fund, which, like the funeral fund, is not rescindable and supplements for the expenses of this child that are not covered by government assistance programs. Again, this fund needs to be set up as an irrevocable trust in order for the funds not to hurt one’s Medicaid eligibility.
As one can see, there are many details to educate oneself on when considering Medicaid-sponsored long-term care. Being armed with the right information, is the difference between achieving successful long-term care and achieving almost-successful long-term, which is just not good enough for yourself or your loved one.
Caregiving is a difficult role. It’s filled with unexpected challenges, as well as physical and emotional turmoil that can lead to poor health. When you’re the primary caregiver to an aging loved one, their wellbeing is at the top of your priority list. However, taking some time for respite care can help you stay healthy too, so you can continue to provide quality care for a loved one at home.
Here are a few respite care services that can support you in your role:
In-Home Respite Care
In-home respite care is one options that families utilize to support aging loved ones who have decided to age in place. There are many in-home care agencies that offer trained caregivers to families for a few hours or a few days a week, depending on the elder’s needs. Most agencies have a base rate between $25 and $45 per hour.
These caregivers can provide companionship, physical therapy supervision, meal preparation, transportation, and help with activities of daily living such as bathing and dressing. Everyone needs a break from time to time, and hiring in-home care is a great way to get the support your loved one needs so you can take some time to focus on other responsibilities.
Community-Based Respite Care
Many senior housing communities also offer short-term respite stays ranging from a few days to a few weeks long. These short-term stays are great for families who need a break from their caregiving duties, are going away on vacation, or are otherwise unable to provide the needed care. Respite stays generally range from $150 to $300 per day.
During these short-term stays, communities provide assistance with activities of daily living, support with medication management, and provide nutritious meals to residents at no extra cost. To aging loved ones, a respite stay will feel like a luxury vacation in a welcoming community of peers. To family caregivers, a respite stay can provide peace of mind so that they can take time off to focus on their own health and wellbeing.
A variety of organizations also provide respite grants for families of aging loved ones to utilize when they need some help in their caregiving role. The Alzheimer’s Association, the National Family Caregiver Support Program, and the Alzheimer’s Foundation of America all offer funding to families in need of in-home or community-based respite care. Grants often range from $500-$1000, and can usually cover up to a week of respite care. Many senior housing communities will work with families and organizations in order to schedule respite stays that fit within the grant budget.
Online Support Groups
If you decide that you’d like to keep caring for an aging loved one, but just need some support from others going through the same experience, online support groups can be extremely beneficial. Whether you join a Facebook group for caregivers or a forum on The Caregiver Space, being part of a community can help you feel supported in both good times and bad.
These are just a few examples of respite services that can serve your family as you work tirelessly to provide care for aging loved ones at home. Even a few days of respite can make a world of difference when it comes to taking on a caregiving role. So if you start noticing the signs of caregiver burnout such as fatigue, stress or anxiety, consider respite care to help you get back on track.
Jacqueline Hatch is the Content Manager at Seniorly, a company that provides free resources for families in need of senior care services. Her goal is to produce educational articles for Seniorly’s Resource Center to help families navigate the complicated world of aging options.
As the years go by and mom and dad age, life can become complicated. Certain things are practically impossible to prepare for, while others, like finances, can and should be organized and taken care of early on. What do you need to know about your parents’ finances?
Kurt Kazanowski, a hospice, homecare and senior care expert, who is author of A Son’s Journey: Taking Care of Mom and Dad, says children should know the answers to these 10 questions when it comes to their parents’ finances.
- Have they named a durable power of attorney to manage their finances? The first step is to find out if they have named a Durable Power of Attorney (POA). Without a POA in place, you’ll have to go to court to get guardianship of your parents in order to access accounts on their behalf.
- Where do they keep their financial records? Whether they keep their money and documents in a bank, a safe or under the mattress, you need to know where to find records when you need them. Also find out the location of keys or codes to lock boxes or safes.
- What are their bank account numbers and names of their financial institutions? In addition to knowing where they keep their money, you need specifics on all account numbers. What banks and mortgage company do they use? Do they have an investment firm? How many credit card accounts do they have and where do they keep their statements?
- What are your parents’ monthly expenses? Gather information on their mortgage, car payment, credit card debt, electric bills and other expenses.
- How do they pay their bills? If there are automatic deductions being taken out of a checking account, you need to know about them. Do they use online banking/bill pay or only paper checks?
- How much is their annual income and where does it come from? Do your parents receive monthly pension checks? Do they have dividends coming in from investments? Do they get money for a disability or alimony?
- Do they receive Medicare, Medicaid or Social Security? If your parents have become incapacitated, you may have to investigate the status and eligibility of government assistance.
- What kind of medical health insurance do they have in addition to Medicare? Do they have health insurance provided by an employer? If they are retired, are health benefits included as part of a pension?
- Do they have long-term care insurance? A “regular” health insurance plan does not cover the cost of assisted living or a nursing home. Did they purchase a long-term care insurance policy to cover the cost of those residences? If not, and they can no longer live on their own, what can they afford in terms of housing?
- Do they have an accountant or financial planner? Who is it and how do you contact them? Have they done any estate planning? Ask if you can meet with their financial professional with them to discuss their situations.
Right after the accident, my life was sort of glamorous in a weird, morbid way. Everyone stopped what they were doing to rally around and pitch in. We’re young, none of our friends had experienced this before, and we were lucky enough to have friends who went all out. It was so tragic — the last time some people had seen us was at our wedding, cue the tears. It felt like our life was a movie, only in the end he didn’t make a miraculous recovery.
After that, things stopped being a tragic love story and started to be a grind. People stopped dropping off meals and checking in all the time. Everyone else went back to their normal lives. I spent 2016 feeling like I was slipping further and further away from myself. From the life I’d planned for us. From the husband I’d just married.
But my husband is still here. I’m still here. And this is our lives. I can’t just float along from one day to another forever. So I’m making a New Years Resolution — or three — to take my life back.
Choose to do this every day
If you asked me if I would ever choose to be a caregiver, I’d tell you no. It doesn’t feel like I made a choice. It feels like something that happened to me.
I know that’s not really true. The accident happened to my husband, which happened to me. But that doesn’t mean rearranging the rest of my entire life to take care of him was the only option. Yes, all of the options were terrible, but they were still options. Leaving him didn’t occur to me as a choice because I would never do that to someone I love so much, but I could have and I still could. Every moment of every day is me continually choosing to stay with him, ’til death do us part.
In a weird way, thinking about all of the things I could do instead of caring for him makes each day easier. Because for me any of those options would be harder.
My life felt like it was spiraling out of control. Remembering that I am choosing to do this — every moment, good or bad — makes me feel like it’s my life. My life isn’t on hold or being sacrificed or taken away from me, this is the life I’m choosing for myself.
I’m going to remember that this is what I want to do.
Do one thing for myself every day
It doesn’t take long to lose yourself as a caregiver. Everything is about my husband. Or, really, not about him but his needs. He’s not a spoiled child; he’s not getting any of the things he wants, either. I spend more time doing things for the hospital than doing things that are actually for my husband, like the cute, thoughtful things we used to do for each other.
At this point, I don’t even know what I want anymore. The things I used to enjoy seem completely irrelevant to me now. Or plain out impossible. I’ve changed so much and I want to get to know this new version of myself.
Maybe I’m going to get back to doing 5-minute sketches in the mornings. Or occasionally putting on makeup, just because. We can’t really go out, so maybe it’d be fun to make a nice dinner at home. Maybe it’s just giving myself permission to daydream, even though there’s always a chore to be done.
I’m going to get creative and think of things that aren’t expensive. Self-care doesn’t require a life coach or a credit card. It’s just listening to my own needs.
The one thing I might spend money on myself for is my own health. I used to think getting sick wasn’t an option with work. Ha! Now I want to be healthy for myself and my husband more than ever before. I’m going to make sure I get a checkup, go to the ob-gyn for an annual, do all the recommended screenings for my age group, and eat a little healthier. Hopefully coordinating to be able to do those things will mean more time for us together in the future.
I’m going to get to know this new version of myself.
First, let’s admit that I don’t really understand Snapchat. Luckily for me, it seems like no one over the age of 17 does and all of my friends are over 17, so we’re good. None of us know what the heck we’re doing or how those filters get added or what it means. This is why I had it installed on my phone for a really long time (in smartphone years) before I started using it.
But then one of my friends called me out for never viewing his snaps. When I told him I didn’t have anything exciting to send him, he told me I was missing the point. The point is hey, I’m thinking of you and I want you to be in my life. And he started sending me a barrage of the most boring snaps you can imagine. Waiting for his car to warm up in the morning. The silent elevator ride. The coffee cup on his desk in his cubicle. You get the idea. It was actually pretty fun and I had a whole new perspective on what it’s like to be him. And I started sending back boring snaps. He loved them.
Once I was checking Snapchat every day, friends I hadn’t heard from in ages started sending me snaps and I started sending them back.
When I was getting nonstop snaps from holiday parties I couldn’t go to, it was pretty hard. But let’s be honest that I was going to feel lonely and awful to be missing out no matter what. Instead of feeling forgotten, like all of my friends’ lives had moved on without me, here they were lighting up my phone every 20 minutes with silly little packets of hey, we love you and we miss you and we wish you were here.
I’m not going to make the holiday party next year, either. Being a social butterfly isn’t an option. But there are still ways to stay connected to my friends.
My goal for 2017 is to keep space for my friends in my life.
Why did we decide to become a family caregiver? Because we put our loved ones first and want the best for them. We want them to be happy and as healthy as possible. Part of our duty as caregivers requires the administering of medication. Adhering to a medication plan can be a challenging task for any individual, let alone caregivers, who hold a far greater responsibility.
According to a study by the World Health Organization 50% of all prescribed medications are either taken incorrectly or not at all. This can be fatal: In the US alone approximately 125,000 people die annually as a result of not following the doctor’s prescription.
This is a very frightening statistic.
Fortunately there is now a simple way to manage treatments and keep an overview of one’s progress: The MyTherapy app.
You might think: “Well, fine – another pill reminder.” but MyTherapy is much more than that. It unifies a person’s whole treatment in one application. The free app transforms a therapy into a to-do list which motivates people to complete it and fulfill their responsibilities. The app allows you to set reminders for medications, record measurements like blood pressure and even enter activities. Your smartphone will help you stay organized and on top of your responsibilities. But that’s not all.
MyTherapy also offers an integrated diary which is able to document all vitals. This is as useful for you and your loved ones as it is for the practitioners. With this tool your doctor will be able to easily identify health patterns and you will have a readily available overview of your progression. Before the next appointment, you can print out a personal health report to discuss. The well-structured report enables doctors to quickly identify and optimize a therapy plan for their patient.
There are two different ways that the use of MyTherapy can support you and your beloved one:
Only you as a caregiver use MyTherapy:
If you decide to become a “digital caregiver” with the support of MyTherapy you will benefit as the app simplifies your daily routine. The app enables you to easily make sure that your loved ones remember all their responsibilities. It will be easier to make sure they stick to the individual therapy plan, take their meds, work out and remember their measurements. This will eliminate the stress of having to remember everything – the use of MyTherapy gives you peace of mind and enables you to spend more quality time with the person you care for.
Your beloved one uses MyTherapy and you connect to him or her via the team function:
Of course it is also possible that your loved one may wish to feel less dependent and might like to take control of his or her therapy. The app will then simplify the daily routine and ensure a lot of self-responsibility. You as caregivers have the opportunity to connect via the team function and be his or her personal safety net. You will be able to see the status of medication as well as the therapy progression and their vitals. Most importantly, you are able to see if all medication is taken properly and in case your loved one forgets to do something, you can be the additional reminder.
The outstanding ease of usability for patients of all age groups has been proven many times. Also, MyTherapy’s impact on medication adherence has been demonstrated by several studies with reputable research institutes including Germany’s largest university hospital Charité Berlin. Recently MyTherapy was awarded with the Kindness for Kids Award for “MyTherapy DermaKids”, a collaborative-project with the University hospital of Munich (LMU). MyTherapy was started in Germany and strictly protects data privacy: you can use the app without subscribing and your personal data will not be shared with third parties. The MyTherapy app is free of charge and can be downloaded in the Google Play Store and in the App Store.
MyTherapy is the app for caregivers and the people they care for. Of course it can never replace the physical care and our unconditional love. But it can help to simplify daily routines and formulate an insightful overview for personal and professional use. Have a try and see how it can support you.
My name is Patrice Marie White, I’m from the UK.
I am a former fulltime caregiver for my late mother.
The other day, I was guided to draw something in a childlike way that illustrates and depicts a scenario faced, both as an adult caregiver and as a child caregiver.
1am #nilbymouth #hospitalroom #bloodpressuremachine, #stilldarkoutside #disabledtoilet #hospitabed #Sidetable #Overnightbags ect : A Rough child-like #Illustration #Drawing of #pasttime #Adultcarer #ChildCarer #Scenario #Example situation many *have* *will*or *are* facing.
Woman reaching for #medicalnotes #careplan is me, so is the little girl holding a toy. #TIMELINE #Caregiving #Carer #YoungCarer #Youngcarers the saga STILL continues for many. <3 #neverforget
A new study found that more socially isolated breast cancer survivors had higher rates of recurrence and mortality, while women with larger social networks experienced better outcomes. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the study found that some types of social ties were beneficial, while others were not, and that some types of relationships only benefited patients in certain racial or age groups.
For the analysis, Candyce Kroenke, MPH, ScD, of the Kaiser Permanente Division of Researchin Oakland, California, and her colleagues examined information on 9267 women with breast cancer to see how patients’ social networks within approximately two years following their diagnosis might affect their survival.
Over a median follow-up of 10.6 years, there were 1448 cancer recurrences and 1521 deaths (990 from breast cancer). Compared with socially integrated women, socially isolated women had a 40 percent higher risk of recurrence, a 60 percent higher risk of dying from breast cancer, and a 70 percent higher risk of dying from any cause. These associations were stronger in those with stage I/II cancer. Specific associations differed by age, race/ethnicity, and country of origin. For example, ties to relatives and friends predicted lower breast cancer–specific mortality in non-White women, whereas having a spouse predicted lower breast cancer-specific mortality in older White women. Community ties predicted better outcomes in older Whites and Asians.
“It is well established that larger social networks predict lower overall mortality in healthy populations and in breast cancer patients, but associations with breast cancer–specific outcomes like recurrence and breast cancer mortality have been mixed,” said Dr. Kroenke. “These findings, from a large pooled cohort of nearly 10,000 women with breast cancer, confirm the generally beneficial influence of women’s social ties on breast cancer recurrence and mortality; however, they also point to complexity, that not all social ties are beneficial, and not in all women.”
Dr. Kroenke added that clinicians should assess information on social networks as a marker of prognosis and should consider that critical supports may differ by sociodemographic factors. Also, she stressed the need for additional research to understand the mechanisms through which social networks influence outcomes so that effective interventions might be developed.
Full Citation: “Post-diagnosis social networks and breast cancer mortality in the After Breast Cancer Pooling Project (ABCPP).”Candyce H. Kroenke, Yvonne Michael, Elizabeth M. Poole, Marilyn L. Kwan, Sarah Nechuta, Eric Leas, Bette J. Caan, John Pierce, Xiao-Ou Shu, Ying Zheng, and Wendy Y. Chen. CANCER; Published Online: December 12, 2016 (DOI: 10.1002/cncr.30440).
Janet Byron, Kaiser Permanente Senior Communications Consultant
CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.
Follow us on Twitter @JournalCancer and Facebook https://www.facebook.com/ACSJournals
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.
Being a caregiver comes with many challenges, whether you’re caring for a relative or a paying client. Caregivers who are relatives often take on the responsibility of managing their charge’s finances, which can be a complicated and frustrating process for all involved. Below are some of the major financial challenges that face seniors and some tips on how to discuss them productively.
When you no longer have a steady income, monthly bills can add up quickly, even with proper retirement planning. With rising costs in prescriptions, food, amenities, and pretty much every aspect of life, many seniors are finding that their retirement funds aren’t going as far as they thought they would.
How to Discuss
Sit down with the monthly bills and talk about what is necessary and what can be cut. For prescriptions, look into whether using a different pharmacy would change the price, or if there are generic-brand prescriptions or over-the-counter options their doctor can recommend. If your charge does not want to talk about money, ask if you can try to cut expenses without them. If the answer is no, then gently continue to bring up the subject until they acknowledge the importance of their finances.
Seniors can get defensive about their health, and since life insurance mainly exists to cover death, many don’t want to think about it. This is one of many reasons so many seniors let their life insurance lapse. It’s important to discuss with them what coverage they have, whether they need coverage that applies to long term care, and whether their final expenses will be covered.
How to Discuss
When going through the monthly bills, address whether or not the life insurance bill exists, and if it does, ask what specifically it covers. This is the first step to determining if they have adequate coverage, or if they’re paying too much. If you can keep the subject focused on finances rather than “when they’re gone”, it will be a much more pleasant conversation.
Another reason people don’t like to talk about insurance is because they don’t understand it. Print off a basic guide to life insurance and help them learn any terms they’re unfamiliar with.
Many seniors require accessible spaces. Because of pride or fear, some seniors refuse to have safety improvements added to their home. If your charge has mobility impairments or specific accessibility needs, talk with them about improving their daily life with some home improvements.
How to discuss
Many seniors don’t know where to start when it comes to home repairs. They might be worried about cost, or they might feel like they shouldn’t need special accommodations. It’s important to address the issue from a convenience perspective. If they get a safe walk-in tub, they’ll need less help in the bathroom. If they have a wheelchair ramp installed, they might be able to spend more time outdoors. If they get handrails that meet ADA height requirements, they’ll have an easier time traversing stairs in and outside their home.
If they’re worried about funding, look into subsidy programs. If the additions are accessibility focused, your client may be able to get financial assistance in making the improvements. This assistance can be government provided or come from private organizations. Many areas have local programs dedicated to helping seniors.
When budgets are tight, extra spending can be the difference between comfort and poverty. If the person you care for insists on spending extra on trinkets, unnecessary items, eating out, or other activities, you’ll have to talk with them about how much spending in wise. This can be hard, because many seniors want to assert their independence and control over their own actions.
How to Discuss
Sit down and show them what their finances will look like if they continue their current spending. Offer to set up a budget for them or help them do so using online budget templates. Many are simple and straightforward, and require no computer skills. Once they’re able to see the effect of their spending, they should be more open to making a sustainable budget plan, minimizing extraneous expenses.
These are just a few ways to discuss finances with the people you care for. They won’t work in every situation, but hopefully they will be a good starting point for you. Do you have more tips? Share 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!
Igor Lebovic, Kindly Care CEO
The holiday décor and trappings have already appeared in stores and folks are starting to make celebratory plans for the season. If you are a family caregiver for an ill or cognitively impaired individual, you may not be looking forward to the holidays; more work, more company (including those who may not realize how their presence and demands impacts on your schedule and work load), and additional stress on you and the person you care for.
Holiday gatherings easily show off an individual’s deficits. Imagine how confusing it is to be impaired and surrounded by people who know you, but you have no recall. Think about the constant noise (music, bells, etc.), bright lights and decorations that distort your sense of who and where you are. Imagine going to a family party with foods that no longer may be recognizable to you or that you are unsure how to eat.
So my advice is to learn to set realistic expectations—for you and your family member.
For your loved one:
- Attempt to maintain a regular schedule whenever possible.
- Simplify: shorten visits and events. You do not have to accept all invitations. Determine which ones might be the most important or provide the most joy to your loved one.
- Watch your family member’s reactions. Pay attention to their stress levels and make adjustments as necessary.
- Attempt to limit visitors to smaller, sporadic groups. This might be a perfect time to let other family members “visit” while you (caregiver) take a nap, Christmas shop or quietly read a book. If you must attend a large gathering, locate a quiet spot to leave the crowd for a “time out.”
- Make introductions with explanations. Act like you are introducing the visitor to your Mom or Dad.
- Maintain the familiar. Old traditions, familiar music, reading/signing holiday cards or other simple customs can be enjoyable and feel comfortable to the impaired individual.
- Pay attention: unthinking guests may offer your 90 pound mom on heavy medication the “spiked” eggnog, or mom might forget she is lactose intolerant and make herself a cheese plate.
- Keep physical conditions in mind. A person in pain or with special medical needs should be asked how much and when they want to participate. Don’t insist that they do. Give them an “out” if it becomes too exhausting. Needless to say, ask family who are sick to visit at another time.
- Where possible, solicit your loved one’s involvement in simple preparations—cooking, cleaning, sorting, etc. Most importantly, thank them for their help. Everyone likes to be appreciated.
- Get involved and do something (anything): a short walk to look at Christmas decorations, an animated holiday musical that encourages simulated dancing or swaying, decorating a tree – these are all possible activities.
- Reminisce about past gatherings, traditions or people. It’s time to bring out those old photo albums!
- Be prepared! Make sure you have a supply of medication, incontinence products, quick snacks, some baby wipes and an extra sweater when going out.
As a caregiver:
- Set reasonable expectations for yourself. You cannot do everything, and, most importantly, you don’t have to. Do you really need to make 5 kinds of cookies when you can go to Costco?
- Maintaining the same schedule and simplifying the season will go a long way in easing your stress.
- Ask for assistance! Ask family members to come sit with mom and dad while you do errands. Better yet, ask them to bake the holiday cookies or come help you clean the day before Thanksgiving. Learning to ask for help will make for better caregiving. After dinner coffee when mom is taking her nap is a great time to bring up whatever ongoing help you need.
- Self preservation: remember to take care of yourself first. Airlines advise you to put on your oxygen mask before your child’s so you can clearly and safely care for another. Self care helps you maintain your health, your patience and your sanity.
- Forget about perfection! A lopsided tree, gift cards instead of an actual boxed presents or a bakery pie will not detract from what’s important about the season. Spending time with family, keeping mom or dad comfortable with the gathering, and sharing the love will create a much longer lasting memory.
Igor Lebovic is the CEO of Kindly Care, a self-serve care management platform that makes it incredibly simple to privately hire caregivers without having to worry about sourcing, safety or compliance.
Follow Igor Lebovic on Twitter.
A new analysis points to surprisingly low rates of serious impacts from medication errors affecting nursing home residents, despite the fact that these errors remain fairly common. The investigators noted that it’s unclear whether medication errors resulting in serious outcomes are truly infrequent or are under-reported due to the difficulty in ascertaining them. The findings are published in the Journal of the American Geriatrics Society.
Medication errors can cause considerable harm, and older adults in nursing homes may be especially vulnerable. To assess the prevalence of medication errors leading to hospitalizations and deaths in nursing home residents, and to determine the factors associated with these errors, Joseph Ibrahim, MBBS, FRACP, PhD, an academic physician in geriatric medicine at Monash University in Australia, and his colleagues conducted a literature search of relevant studies published between 2000 and 2015. After identifying 11 studies, the researchers examined three types of medication errors: all medication errors, transfer-related medication errors, and potentially inappropriate medications.
Medication errors were common, involving 16 percent to 27 percent of residents in studies examining all types of medication errors. Transfer-related medication errors occurred in 13 percent to 31 percent of residents, while 75 percent of residents were prescribed at least one potentially inappropriate medication.
The team found that serious impacts of medication errors were surprisingly low, however, and they were reported in only zero to one percent of medication errors, with death being a rare event.
“This is an important step to addressing the global issue for improving the quality and safety of medications for older people,” said Prof. Ibrahim. “Nursing homes should review their systems of care from prescribing to administration. Good practice requires using a team-based approach involving the resident, care and nursing staff, pharmacists, and medical practitioners.”
Article: “A systematic review of the prevalence of medication errors resulting in hospitalization and death of nursing home residents. Noha Ferrah, Janaka J. Lovell, and Joseph E. Ibrahim. Journal of the American Geriatrics Society; Published Online: November 21, 2016 (DOI: 10.1111/jgs.14683): http://doi.wiley.com/10.1111/jgs.14683
The Journal of the American Geriatrics Society is a comprehensive and reliable source of monthly research and information about common diseases and disorders of older adults. For more information, please visit http://wileyonlinelibrary.com/journal/jgs.
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.
Every Christmas season I work myself up into a panic. As a busy caregiver and a mom, Christmas just feels like a lot of work. I’m determined to not stress out this holiday. Maybe I’ll even enjoy myself.
Here are the promises I’m making to myself this Christmas:
This is not my life. And that’s okay.
I am not going to make Pinterest perfect Christmas cookies
I’m not even going to try. We might bake cookies that look like lumps of coal. That’s just fine. Maybe I’ll even just buy cookies this year. And I’ll eat too many of them.
I am not going to send out Christmas cards
We all love getting Christmas cards, but it’s okay to not have time this year. I’m not going to feel guilty about it. A Facebook post or an email is just fine. And it’s totally fine that the kids are not going to sit still for a photo. It adds character.
I am not going to make Christmas dinner from scratch
It’s just not worth the time and effort. Stuffing out of a box is still delicious. The important thing is to spend time with my family and enjoy myself.
I am not going to get the perfect gift
I’m not going to wait in lines. I’m not going to obsess about it. I’m going to get presents, sure, but that’s not going to be the main way I show my love and appreciation for the people in my life.
I am not going to complete my to-do list
Ever. And that’s okay. I’m going to work on not putting things on there unless they really need to be done.
I am not going to go to everyone’s Christmas party
Actually, I never go to everyone’s Christmas parties. The real promise is that I’m not going to feel bad about not going. I have my priorities and they’re just fine. If there are some hurt feelings, people will need to understand that spending quality time with me can’t be lumped into a group event.
I am not going to regret what I didn’t do in 2016
I’ve done the best I can. I’m pretty impressed with myself. I’m going to leave it at that.
I remember when I loved Christmas and New Years. Before my mother got sick.
We try to pretend we’re a normal family at Christmas still. It doesn’t work.
Christmas planning used to be fun, if a little stressful. What new recipes should we try? What old favorites do we include? Which uncle will fail to RSVP and show up half way through dinner?
Maybe we weren’t going to be a TV family any time soon, but we had our moments. Christmas was about the little kids.
We try to pretend my mother’s illness doesn’t overshadow everything. We’re not kidding anyone.
The layers of planning for a holiday dinner are astronomical. Either we change all the recipes to things that are safe for her to eat, or we make two versions of everything. Every sentence is interrupted by the beeping and whirring of machines — or something she needs.
Every moment of every day is modified by her illness. Normally it doesn’t bother me. This is our life, this is our normal.
But there’s something about the holidays that really gets me down.
I’m no longer excited to stay up late to watch the ball drop. I just want to go to bed.
Normally I don’t feel like I’m missing out. My friends lead their own lives, I don’t need my life to be like theirs.
But at Christmas everyone else is sitting around opening gifts, spoiling the little kids, being an ideal of a family. On New Years we’re all looking forward to a brighter, better future.
And we can’t do that.
I wish we could do that.
Family Caregivers to Receive Free Meals Monthly Throughout 2017
Contest Goal is to Spotlight the Value and Selfless Commitment of Caregivers
Seniorlink, Inc., a leading caregiver solutions company, announced a call for entries for “Thank You Caregiver Nation” – a new contest focused on raising awareness of family caregivers – the many silent heroes who provide care and comfort to a loved one.
The contest will feature twelve winners, with one winner selected for each month of 2017. Each winner will receive a credit to purchase meal options from PeachDish, a nutritious meal kit delivery company. The winners can use their PeachDish credit to order fresh, farm-to-table ingredients to cook meals for their families, and reduce the stress of food shopping and meal planning.
There are an estimated 44 million caregivers in the United States today. They are the partners, spouses, sons, daughters, friends and loved ones who carry out a daily mission of compassion, hope and assistance. Through their commitment they provide dignity and comfort to a family member or loved one in need of care.
“Seniorlink stands alongside family caregivers as they fulfill their vital role in their loved ones lives,” said Thomas P. Riley, CEO of Seniorlink, Inc. “Caregiving can take a physical, financial and emotional toll. This contest is our way of saying thank you – and showing our unwavering commitment to provide the highest quality resources, advocacy and insights for caregivers and their families.”
Individuals wishing to nominate a caregiver, or themselves if they are a caregiver, have until midnight on December 31, 2016 to register at www.tycaregivers.com. All that is required is an email address and a short written entry outlining why the nominated caregiver should be recognized. Winners will be randomly selected from a pool of applicants and notified via email.
See www.tycaregivers.com for complete contest terms and conditions.
For more than 16 years, Seniorlink has pioneered solutions for caregivers across the nation, helping them provide their loved ones with the highest quality care. Seniorlink’s unique in-home care solution, Caregiver Homes, dedicates experienced care teams to work alongside caregivers and their families, offering coaching and support at every step. This model, known as Structured Family Caregiving, was the first home and community-based service in the nation to receive the National Committee for Quality Assurance’s (NCQA) highest level of Accreditation for Case Management.
To move from supporting thousands to millions of caregivers, Seniorlink has developed Vela, a caregiving platform that brings compassion to technology and assists caregivers as they navigate the complex and sometimes overwhelming world of caregiving. Vela transforms the caregiving experience by connecting care partners directly with caregivers to provide them with the coaching and insights they need along their journey, ultimately improving outcomes and lowering costs for their most complex, vulnerable members. To learn more, go to www.seniorlink.com and follow on Twitter @SeniorlinkInc.
NCQA is a private, non-profit organization dedicated to improving health care quality. NCQA accredits and certifies a wide range of health care organizations. It also recognizes clinicians and practices in key areas of performance. NCQA is committed to providing health care quality information for consumers, purchasers, health care providers and researchers.
Celebrating the freshest ingredients with Southern-inspired food full of innovative flavor, PeachDish delivers a refrigerated box to your doorstep with ingredients and recipes to cook dinner at home. Customers choose from at least eight different menu options each week, including at least three vegetarian dishes. While purchasing produce at the season’s peak to achieve the most flavor and nutrition, the company works directly with farmers and purveyors to source ingredients local to the Southeast, which has an especially long growing season. Boxes are priced depending on number of servings ordered, and shipping location around the U.S. Order as often as you like, with free shipping for regular subscribers.
The moment of diagnosis is emotional when the diagnosis is dysphagia or swallowing disorder. It is a big challenge for caregivers. When a person has a swallowing disorder, suddenly, from that moment forward, it’s all puree. For the newly diagnosed, this is an emergency. The whole family, patient and caregiver, are in a new moment. They must respond.
I was my mother’s principal caregiver for five years. When she was diagnosed with dysphagia, as the result of dementia, I was on my own. I approached this task as a journalist. I researched the available cookbooks and found them wanting in practical advice, the how to do it. I researched the foods available commercially and found them to be poor examples of nutritional healing.
I interviewed professionals in all the relevant fields, from physicians to dietitians and speech language pathologists to nurses and nurses’ aides. I got an editorial review from a top dysphagia care expert.
Essential Puree: The A to Z Guidebook — This is the volume that I wish I had when my mother got the diagnosis.
Essential Puree aids in the transition, takes away the moment of confusion and even fear. This is for helping the caregiver shoulder the responsibility of feeding, whether the caregiver is a family member or a professional caregiver, whether the patient is at home in a home healthcare situation or in a healthcare facility. Nutrition for the Elderly is important, and it is vastly overlooked.
Essential Puree marries the art of fine food with the science of puree. Just because the form of the diet changes, does not mean you have to give up flavor. I teach the biggest secret to the art of puree. The sauce is the medium of flavor.
This volume takes the reader from the moment of diagnosis step by step through the setting up and running of a puree kitchen. It is fast, easy, organized and smart. The pantry, the freezer, the fridge, food storage and labeling. The book celebrates clean eating and nutritional healing. It is all about flavor, flavor, flavor.
This book includes 67 family recipes for classic American comfort foods done in a healthy manner. The recipes and their variations have been handed down for generations.
I also include a section called The Science of Puree, with information about the National Dysphagia Diet, Instant Thickeners for food and for beverages. This was contributed by the dysphagia care expert, Laura Michael, a member of the board of the national Foundation of Swallowing Disorders. I tested the best kitchen appliances for simplifying the labor or food preparation, storage and cleanup.
Patient and caregiver may try free recipes, posted in my Blog at the Essential Puree website.
I offer a Free Download, Shake, Rattle and Roll, for creating three nutritionally dense shakes, ready in a flash.
These are classic American shakes, the Miami shake, the Memphis Shake and the Motown Shake. Better-tasting than anything you could buy off the shelf, with no white sugar, preservatives or chemicals. Check out the e-book.
Essential Puree is available in print and eBook editions on the website, and at Amazon and other online sources.
Diane Wolff has been published in “The New York Times, ” “The New York Times Book Review, ” and the “Chicago Tribune”, among others, for her work on China and Tibet.
I do this work in my mother’s memory, that what I created for her may be of benefit to others.
I have recently done a dessert tasting at the New York charity God’s Love We Deliver, and I do lecture demonstrations at the stroke centers of Bayfront Medical and Fawcett, here in Port Charlotte, Florida, where I live.
It’s decision time for the 55 million Americans covered by Medicare.
Open enrollment, when people can enroll in Medicare or make changes to their plans, runs every year from Oct. 15 to Dec. 7. But anyone who thinks that signing up for the medical plan for seniors is simple could be in for a rude awakening – and a costly one.
“People need to realize that enrolling in Medicare can be complicated,” says Chris Orestis, a senior-care advocate and author of the books “Help on the Way” and “A Survival Guide to Aging.”
“If you don’t pay attention you can end up missing needed coverage or paying more out-of-pocket expenses in premiums, co-pays and deductibles than you realize – or can afford.”
This year open enrollment comes during a presidential election and a time when there are concerns about Medicare’s long-term future and whether it can remain solvent. At the final presidential debate, Donald Trump and Hillary Clinton were asked what they might do to make sure the program, first implemented in 1965, will be there for seniors for decades to come.
Trump said he would grow the economy, which in turn would help Medicare. Clinton said her plan is to reduce the cost of health care and to emphasize wellness.
But any future political decisions about Medicare can seem far off to anyone whose main concern is figuring out how they fit into what’s offered right now, says Orestis, CEO of Life Care Funding.
He says some important things to keep in mind or understand during Medicare enrollment include:
Medicare coverage comes in two primary forms that participants can choose from. They are original Medicare, the traditional program administered through the federal government which anyone 65 and older qualifies for automatically, and Medicare Advantage plans, which are sold by private insurance companies. The Advantage plans sometimes offer additional services, such as routine vision, hearing and dental care.
Most people probably have heard references to Medicare Part A or Medicare Part D. Here’s how that alphabet breaks down: Medicare Part A pays for hospital and skilled nursing facility care. Medicare Part B pays 80 percent of costs for doctors, outpatient services and medical equipment. Medicare Part C is a private Advantage Plan. Medicare Part D pays for prescriptions.
Anyone who visits a doctor or has been hospitalized knows that deductibles and co-pays can add up quickly. That’s where Medicare Supplemental Insurance (Medigap) comes in. It’s a private insurance that pays the gaps in the varieties of Medicare coverage.
Want to learn more? Orestis says a good place to check is the Center for Medicare and Medicaid Services website, which provides a wealth of information and resources to review and assist enrollment.
Orestis says it’s important to act as soon as possible and not wait until the last minute.
“When it comes to Medicare enrollment,” Orestis says, “not being informed and missing deadlines can cause delays and penalties that could have a negative impact on your coverage – and your wallet.”
Chris Orestis is CEO of Life Care Funding and a 20-year veteran of both the insurance and long-term care industries. A former Washington, D.C., lobbyist, he is a nationally known senior-care advocate and author of the Amazon best-selling books “Help on the Way” and “A Survival Guide to Aging.”
Orestis also is a legislative expert, featured speaker, columnist and contributor to a number of insurance and long-term care industry publications. He is a frequent guest on national radio programs, and has been featured in the Wall Street Journal, the New York Times, USA Today, Fox Business News and PBS.
Caregivers are trusted allies, so it’s no surprise that many people reach out to them for advice and guidance when it’s time to choose a Medicare plan.
There’s a large and growing number of people who are serving as caregivers to their parents, relatives and friends, many of whom don’t have the resources to conduct their own research. According to the National Caregiver Alliance, “approximately 34.2 million Americans have provided unpaid care to an adult age 50 or older in the prior 12 months.”
Caregivers are also clearly stretched for time, since many of them are working full-time jobs in addition to caring for a loved one.
So, if you’re a caregiver, help is on the way. Here are five simple tips to help evaluate Medicare plan options and aid in the enrollment process for 2017:
Allow yourself plenty of time
The Annual Election Period (AEP) for Medicare Advantage and Medicare prescription drug coverage began last month and runs through December 7. As the caregiver, make sure you and your loved one start early so you can make the right decision. Great sites, such as Medicare.gov and humana.com/medicare, are excellent online resources for finding the right plans for the loved one you care for.
Confirm the prescriptions your loved one needs
Managing prescriptions drugs is not easy. When researching Medicare options, be sure to conduct an inventory of the prescriptions your loved one is taking. Write down the names, the dosages, when and how they are taken, and, where they’re being filled. Make copies of this list so loved ones and friends are in the loop, too.
Discuss preferences for doctor visits
If the person you’re helping to enroll in a Medicare plan is comfortable with a primary care physician coordinating their care within a network of Medicare-approved doctors, a Medicare Advantage HMO plan may be a good fit. HMO plans often have a low or even zero monthly plan premium, although the person you’re caring for will typically need to continue to pay his or her Part B premium. If the person you are caring for wants more flexibility in choosing a doctor, a Preferred Provider Organization (PPO) or Private Fee-for-Service (PFFS) plan may be a good plan option. There are also Medicare Supplement insurance plans, which allow more options for selecting a doctor. These plans don’t provide prescription coverage but a standalone prescription drug plan can be purchased as well.
Balance the budget with health care needs.
Many people with Medicare are living on fixed incomes. This makes it critical to review any current Medicare health plan and take a close look at how much has been spent on health care during the past year. Be sure to include hospital expenses, pharmacy costs and doctor bills. This will help to determine—to the best of your ability—the health care expenses expected in 2017 and whether his or her current Medicare health plan still fits within the budget and household finances.
Communicate clearly with the care team
Involve everyone who needs to take part in making these decisions – children, siblings, friends, and other caregivers. By working together as a team–like you do in caregiving—you’ll be able to gather the best information. Others may have done this before, so share knowledge as you go.
Make sure you look at all plan options, including Medicare Advantage plans, the private alternative to Original Medicare. Medicare Advantage plans often offer zero or low monthly plan premiums (although, Part B premiums typically must continue to be paid), set cost-share, and lower or no deductibles compared to Original Medicare. These plans also offer maximum out of pocket cost protection.
Caregiving is a difficult task, but choosing a Medicare plan doesn’t have to add to the stress if you follow these simple tips.
By Jeff Fernandez, Vice President, Humana Medicare West Segment
Caring for a loved one suffering with Alzheimer’s disease can be highly rewarding, but it can also be overwhelming, especially in the beginning as you start to think about changes you’ll need to make in order to keep them safe. There are many details to keep in mind, but fortunately there are also several tips available on how to complete small or simple upgrades and repairs to your home that will ensure your loved one is healthy and happy.
The best way to start is to go from room to room in the home and write down potential hazards or changes you know you want to make. Here are some tips to get you started.
Because Alzheimer’s strikes the elderly, it’s a good idea to start by thinking about physical safety. The bathroom is one of the most dangerous places in the home for an older individual, so you might begin by acquiring a soft faucet cover, a shower chair and rail, and a non-slip mat. It’s also a good idea to check your hot water heater and make sure the temperature is normal, and remove the door locks or install a chain lock that will be easy to cut should you need to help them.
The kitchen can also be a dangerous place, but considering it’s one of the most popular gathering places in the home, it’s important to make sure it’s safe and comfortable. Chairs should have non-slip tabs on the bottom and there should be no loose rugs that could be tripped over. Consider buying a stove that has removable knobs, and always keep at least one fire extinguisher nearby.
Baby monitors are wonderful tools when caring for a loved one living with Alzheimer’s, especially if it is in advanced stages. Having a way for them to be heard should they need assistance is invaluable.
Curtains are preferable over blinds for the windows, as long cords can be safety hazards. Ensure that dressers and heavy furniture are anchored to the walls, and apply pieces of foam or other soft material to the legs of the bed to prevent injuries to toes.
Remove clutter from any walkways and make sure there are no trip hazards. It’s a good idea to consider whether your loved one might need precautions against wandering, such as motion-sensor alarms. Lock up any dangerous items, such as knives or weapons, and install childproof latches on drawers and cupboards that contain things your loved one shouldn’t have access to.
Keep all walkways well-lit and maintained. Night lights can be helpful in bathrooms and in the kitchen for nighttime use. If necessary, close off stairwells to keep your loved one from suffering falls.
Motion-sensor lights are a good idea for outside areas, especially if you have a pool or hot tub or if there is a lot of furniture that could cause a fall. Always keep pool areas covered and locked up, and put away all pool-related equipment after use.
Lock up any tools or machinery, and if you have a shed or detached garage make sure there is a sturdy door with a lock on it.
While these are all certainly great repairs to make for your loved one, it’s important that if you decide to make any of them yourself that you practice DIY safety. Wear the proper protective gear and make sure you know how to handle tools properly. And don’t be afraid to call on a professional when you need one.
Taking care of a loved one who is living with Alzheimer’s can be difficult at times, but it’s important to remember that safety is the number one priority. Making sure your loved one is comfortable and has their needs met will ensure they have healthy, happy days.
Caroline James is passionate about fighting for senior mental health and support. Caroline and her husband createdElder Action after becoming caregivers for their aging parents, with the aim of providing useful information to aging seniors.
Many people want to help a friend or neighbor who may have a mental illness, but they don’t know where to start or what to do. The feeling of helplessness can be paralyzing and many wind up doing nothing and walking away feeling guilty that they could have done more.
To find your way in caring for someone with a possible mental illness, follow these steps to educate yourself and become comfortable meeting your friend or neighbor’s needs.
- Recognize what you can’t see. People with mental illness can lead very successful lives. For example, anxiety is one of the most common – and often hidden – forms of mental illness – 18.1 percent (42 million) of American adults live with anxiety disorders.1 It’s important to remember that mental illnesses are rarely visible. Mental illness should never define the person. See your friend or neighbor for who they are first, not their illness. Just like for anyone else, some days will be better than others. Be patient. One day could be normal and the next could be the day they really need you.
- Avoid stigmas associated with mental illness. The stigma that is often attached to mental illness is that it leads to violent behavior. Statistics show that it is the opposite; adults with mental illness are more likely to be victims of violent behavior than perpetrators. In order to overcome stigmas, it’s important to distinguish the behavior from the person. For example, substance abuse can be used as a coping mechanism for mental illness. Substance abuse coupled with a mental illness can lead to unpredictable or dangerous behavior if left untreated. Approximately 10.2 million adults have both mental health and addiction disorders.1
- Provide a supportive environment and culture. While we all want to help, we must acknowledge that as a society we’re not quite there yet. Our culture still has to work to do to be more supportive to those with mental illness. Many people struggle alone with mental health symptoms every single day. To help those around you who may have a mental illness, do your part in creating a culture that acknowledges mental illness and the underlying challenges people with mental illness face. Let them know it’s okay to get help. Let your friends and neighbors know they are not alone and help direct them to places that can help with their specific needs so that everyone can function in a safe and healthful society.
- Overcome challenges to getting and giving help. Depending on the resources in your area, getting help for mental illness can be complicated. Don’t feel like you have to bear the responsibility of rescuing a friend or neighbor with mental health symptoms on your own. The system may not be easy to navigate, so if you are not a professional in the field, find someone who is and ask them what to do. It’s okay for caregivers to get help too. Remember that mental illness can lie dormant some days or years and then a life-changing event could cause symptoms to reoccur. Have a quick number to call a local resource that is available in short order should your friend or neighbor need short term help.
- Demonstrate unconditional love and be inclusive. At the end of the day everyone needs to know they are cared about regardless of their situation. Caregivers of any ability can help their friends with mental illnesses connect with others, socially and professionally, and help them avoid isolation. Kindness is at the root of all caregiving. As author Henry James once said, “Three things in human life are important. The first is to be kind. The second is to be kind. And the third is to be kind.”
- Don’t forget about caring for yourself, too. Caring for someone who has a mental illness can be a difficult endeavor. In order to keep helping and loving them best, make sure you continue to remind yourself that the illness does not define your relationship. You should also remember that getting help is okay and that applies to you, too.
These are some very basic principles to caring for someone who may have a mental health problem. If you take anything away from this article it’s these things:
- Your friend’s illness does not define who they are;
- Do not allow mental illness to define your relationship; and
- Remember that much is out of your control and that is okay, you can help find the resources your friend needs.
No matter what mental illness your friend or neighbor may face, the best thing you can give them is the reassurance that someone cares. The rest will fall into place.
By Donna Gallup, CEO and president of American Family Housing
Donna Gallup, M.S.W., L.S.W., is president & CEO of American Family Housing and a lifelong human services advocate who has tenaciously worked to benefit disadvantaged individuals and communities. Gallup is currently getting her doctorate at the University of Southern California for organizational change and leadership. With decades of experience in housing and community development, fundraising and social services, Donna possesses a unique and comprehensive understanding of the issues affecting the homeless population in California and across the USA. A New Jersey native, Donna holds a Master’s Degree in social work from New York University and has worked extensively with special needs populations, including the homeless, adults with mental illness, survivors of domestic violence and sexual assault, vulnerable families, and persons living with the challenges of addiction. Within the last decade alone, she has helped secure over $21 million for property acquisition and rehabilitation, operations, and services to develop supportive housing for the homeless and mentally ill. Prior to joining AFH, Donna served as CEO of the LAMP Community located on Skid Row in Los Angeles and in December 2013, the ACLU SoCal honored her at its Bill of Rights Dinner with the Human Rights Advocate award.
1 National Institute of Mental Health. www.nimh.nih.gov
On December 12, 2001 an event unfolded into a life-changing experience for my family. My brother-in-law, Rodney, was in a car accident that on the surface appeared to be an urban collision. In my mind, it could not have rendered the life threatening catastrophic injuries that it wrought. However, the accident was freakish and Rodney’s injuries were profound.
The first few weeks after the initial shock of the accident, the reality of becoming a caregiver began to take shape. My husband was the logical choice for the decision making that had to happen. Without a long-term view of the requirements needed, my husband and I embarked on what has become a 15-year journey of discovery, success and pain.
In the initial months after the accident, Rodney was in a coma and non-responsive. He was breathing through a tracheostomy and fed with a tube directly into his stomach. The best advice at this time was to accept his condition and find an institution that would accept him. Living in Australia, this is an impossible task, as no nursing homes had places available for a young person with such profound injuries. This was the reason why my family cared for him. Rodney needed a home and intense therapy to retrain his brain and begin his long journey to recovery.
Luckily, we had the help of an amazing neurological nurse who spoke to us about the brain’s ability to recover some function. She told us to keep talking to Rodney, ask him questions, and play games to stimulate healing. My husband and I were working full-time and our children were in primary school, but we made time for daily visits and extended periods of therapy. Eventually, we saw progress. The neurologist simply insisted that we were just seeing what we wanted to see. Some of Rodney’s movements appeared to be reflexes, but not in response to stimuli. I knew the doctor was wrong. The first breakthrough was the catalyst for us to continue with purpose. We were working with a small soft ball that we had to place in Rodney’s hand. My son, who was only nine at the time, was taking his turn. He would prise his uncle’s fingers open, place the ball in his hand and gently unfurl his fingers to remove the ball. In what must have been a moment of boredom on my son’s part, he asked his uncle to throw the ball. Rodney’s fingers opened and the ball rolled towards the edge of the bed. It was a response.
From that humble beginning, we commenced a long process of finding the right place for his care and the right therapists to work with him. In 15 years, we have witnessed a significant awakening. While Rodney’s brain injury is profound and permanent, he is not. He is in a wheelchair and has limited physical movement of his upper body. However, he has learned to speak, feed himself and participate in decision-making concerning his care. We have been able to purchase and renovate his home to accommodate his needs. An appropriate care provider does the daily supervision, feeding and personal care for him. He has taken vacations and participates in family activities with us. But these things did not happen overnight. It has been a process of responding to his changing needs. It has taken thousands of hours, phone calls and meetings. There have been nights without sleep, sudden and terrifying declines and many nights in intensive care. It has been frustrating, heartbreaking and exhausting. There have been many times when we have wanted to throw in the towel and say that it has to be someone else’s turn. However, we have persevered.
This is because we have been able to do this as a family. While my husband has taken the lion’s share of the work, it has only happened because we were all in this together. It was a decision to accept that this was our challenge. Together, we have moved forward and Rodney has had the best chance to live a positive and enriched life despite his disability.
When a car accident is reported, people are aghast at the images of broken cars, the horror of the injuries and loss of life. Few ever consider what the long-term complications might look like for someone with a brain injury. They also don’t usually consider what the future looks like for the family who takes on the care of the now disabled family member. It is never something you would expect. It might even be something you think you could never do. Perhaps 15 years ago we might have had that same thought. Like many challenges, it seems impossible at first. But you never know how strong you can become in the face of relentless negativity when faced with a life-changing responsibility.
Caring for someone with a disability is complicated. Not caring is unthinkable.
Tracey Lee is an English teacher at St. Peter’s Anglican College and the author of “What Remains.” She has taught English and behavioral science for more than 30 years. Lee received her bachelor’s degree in education from the University of Tasmania and a master’s degree in creative writing from the University of Canberra. She resides with her husband in Malua Bay, Australia.