The High Cost Of Caregiving

The High Cost Of Caregiving

Marilyn remembers the day that she toured 3 nursing homes for her elderly mother. “Each one was very functional, but they seemed cold and lonely, institutional”, she said. “At the end of the day I just cried. I couldn’t put my mother in one of those places. And the cost was outrageous. Eventually, I decided to take her in myself.”

What Marilyn didn’t realize was even having her mother home with her would end up being a huge financial strain too.  The extra help she needed from regular nursing aid visits, the supplies – they all added up. “It really put a financial strain on my family”, said Marilyn.

Most family caregivers are unaware of the high cost of caring for a loved one at home. Calculating these costs in advance can help you know more of what to expect, and can help you evaluate if it’s truly something that will work for you.

Out Of Pocket Costs

Out of pocket costs for caregiving can be significant.  A study done by AARP estimated that on average, family caregivers spend roughly $7,000 per year on out of pocket costs related to caregiving. (1)  And if you’re caring for a loved one who lives far away, or one who lives with you in your home, expect to pay more. ($11,923 or $8,616, respectively).  (1)

This can be a huge financial strain on caregivers and their families. The AARP study estimated that caregivers spend on average nearly 20% of their income on caregiving activities. (1) And it’s not all just for medical care – household expenses, such as rent or mortgage payments, or home modifications, account for about 41% of spending.  (1) Medical expenses, such as assisted living, insurance, or other medical costs average around 25% of spending. (1)

Lost Wages And Career Advancement

Care for a family member yourself may feel like the best thing to do, but it will cost you in more ways than just out of pocket expenses. According to the Family Caregiver Alliance, women who care for their parents lose an estimated $324,044 in lost wages, benefits, and retirement funds. (Men lose $283,716.) (2)

And caregiving can negatively affect work performance and career advancement: 61% of caregivers experience at least one change in their employment due to caregiving, such as cutting back work hours, taking a leave of absence, taking a demotion, receiving a warning about performance or attendance, arriving late, or even giving up working entirely. (2)

Reduced Savings

Unfortunately, caregiving for a loved one typically comes at a time when the caregivers also need to plan and save for their own retirement. The decision to stop working in order to care for a loved one can jeopardize their future financial security. (3) This is dangerous, since it’s estimated that a couple can expect to pay an average of $280,000 in health care costs alone throughout their retirement. (4)

Plan and Prepare

The best thing to do? Start planning early.  Set up a savings account now for yourself, so that you can be better prepared for the future. Next, talk with your loved one about what they’ve already done to plan for their own long-term care. You may qualify for tax breaks, or credits, or you may be able to utilize an employer FSA (flex spending account) to help cut some costs.

Talk with your employer about your situation too. More companies are starting to offer benefits to caregivers, such as helping to pay for backup care, or advisory services to help you navigate the many aspects of caregiving.

Even if your company doesn’t offer these formally, it’s still a good idea to have a discussion with them about your situation. There may be ways for you to work more flexible hours in order to manage the demands of caregiving, or even take some paid leave to assist with your loved one’s needs. Some big-name companies, such as Facebook, Microsoft, and Deloitte all offer different amounts of paid leave programs to care for loved ones.

In the end, making the decision to become a caregiver is a personal choice. The rewards of caregiving can be great, but it can also come at a high personal sacrifice – both financially and emotionally, for you and your family members.  Do your research, and be sure to have an honest and open discussion with everyone involved.


References:

1. Rainville, Chuck, Laura Skufca, and Laura Mehegan. Family Caregiving and Out-of-Pocket Costs: 2016 Report. Washington, DC: AARP Research, November 2016. https://doi.org/10.26419/res.00138.001

2. https://www.caregiver.org/caregiver-statistics-work-and-caregiving

3. The MetLife Market Survey of Long-term Care Costs, 2011:  https://www.aarp.org/content/dam/aarp/livable-communities/old-learn/health/the-metlife-market-survey-of-nursing-home-assisted-living-adult-day-services-and-home-care-costs-2011-aarp.pdf

4. The Fidelity Retiree Health Care Cost Estimate, 2018. https://www.fidelity.com/viewpoints/personal-finance/plan-for-rising-health-care-costs

Patient Perspective: Julie's Story

Julie's Story - Caring For Her Incontinent Mother

I’ve always been close to my Mom, but after my Dad passed away 5 years ago, we became closer than ever. We talked on the phone every day and I checked in with her every weekend. She was still very active, even after Dad passed, and continued to play golf every month, meet her girlfriends for bridge and walk her dog two times a day.  All of this changed when she had a stroke.

Suddenly, my very independent Mother was unable to do most things for herself.  Without a second thought, I took her in and cared for her as much as possible as she began her slow path to recovery. It was a shock to suddenly watch a woman that I always looked to for guidance become suddenly, completely dependent on me.  

I’m not going to lie - it’s been difficult at times.  She has always been a very proud woman and to have to ask for help for things like using the bathroom, or worse, to need help cleaning up after an accident, was mortifying for her and uncomfortable for me.  

After some trial and error, we finally developed a rhythm with each other and learned which products worked best for day and night. Even though it’s hard, I’m so grateful to still have my mom with me, and I can’t thank organizations like NAFC enough for providing education on management options during this difficult time of life. Help is there if you need it - you just need to know where to look.  

Julie F., Tampa, FL

Tech Tips For Helping A Senior From A Distance

Tech Tips For Helping Seniors From A Distance

Tech Tips For Helping Seniors From A Distance

As we age, it’s normal to need a little help. Most seniors function just fine; it’s just that sometimes, support from loved ones can make a positive difference. That’s why you're ready to help your parents or senior friend.

Decades ago, you had to live near a senior in order to offer help. If you lived far away, there really wasn’t much you could do; however, technology has changed a lot since then.
These days, you can provide some form of assistance even if you live on the other side of the country. But before you can delve into tech like this, it helps to understand what kind of help seniors often need.

Problems Faced By Seniors

Lumen Learning has a free online course that describes the unique challenges faced by seniors. Some of these challenges include:

  • Financial problems brought on by less income and more healthcare expenses.

  • Ageism, or discrimination and prejudice based solely on the senior’s age.

  • Mistreatment or even abuse by people who should be providing care.

  • Loneliness and few opportunities to socialize.

  • Depression and similar mental health issues.

Of course, one of the biggest challenges seniors face is health. Thankfully, people are living longer than ever; the consequence of that is having more health problems. As Everyday Health explains, many seniors face the same medical conditions:

  • Arthritis

  • Heart disease

  • Cancer

  • Alzheimer’s disease and dementia

  • Osteoporosis

  • Diabetes

  • Disability issues

Apps & Sites To Help You Support Seniors

So how can you help your senior loved one manage these challenges when you live far away? With all of the advancement in technology these days, there are tons of apps, sites, and individual pieces of technology that can help you offer assistance no matter where you live.

For example, video chat can help alleviate loneliness and strengthen bonds between a senior and their family or loved ones. Video games can provide the mental stimulation needed to help fight dementia and can be a source of socialization. There are even health trackers that share information in real time. The beauty of this technology is that all of this can be done when you don’t live nearby.

Also, technology like this isn’t reserved just for you. There’s plenty of helpful technology your senior loved one can put to use. Some must-have technology for seniors include:

  • Tablets, smartphones, and iPads for photos, music, video chat, reading, and games.

  • Hearing aids to help with the loss of hearing that often comes with age.

  • Wireless home monitoring systems in case of medical emergencies.

  • Assistive technology such as LED lighting or stove shut-off systems.

  • Smart home technology that gives seniors the freedom to live independently.

Home Services

There are plenty of other ways to help besides providing tangible technology options. Did you know there are a variety of services available online that you can set up from your phone or computer?

For example, if your senior has difficulty getting to the grocery store, Caring.com lists meal delivery services that can provide regular groceries or complete meals delivered directly to their home.

If your senior loved one needs some extra help around the house, there are plenty of online options for housekeeping, pet sitting and lawn, and handyman services.

These are only a few of the options available, but they go to show that it’s easy to connect your senior loved one with the right kind of assistance through the touch of a button.

It’s challenging to take care of a senior from afar, but technology truly is making things so much easier. Once you’re familiar with the typical problems seniors face, you can help by providing your senior with technology that can boost their independence, or by using online services to give them some peace of mind and assistance. By incorporating the benefits of technology into your long-distance caregiving, you can stay connected and involved. In some ways, it might feel like you were never gone.

How To Have An End-Of-Life-Care Talk With Your Parent

End Of Life Care
End Of Life Care

It’s not something we ever want to think about, much less discuss. But we all get older, and sooner or later, there will be decisions that need to be made when it comes to how we, and our loved ones, want to be cared for toward the end of our life.  Talking about dying is not fun, but it is necessary to do it ahead of time to ensure that everyone’s wishes and needs are met – especially in the event that a loved one can no longer make those wishes heard on his or her own.

When talking with a parent, approach them directly, and let them know that you’d like to talk about how they’d like to be cared for as they get older.  This involves asking them questions about how involved they’d like to be in their medical care (do they want their doctors to do what they think is best or do they want to have a say in every decision), how much they want their family involved, what to do in the event of life-support or a terminal illness, etc. Talking about and documenting these wishes early will help prevent confusion later on and can ensure that your parent’s end-of-life wishes are carried out the way they would like.

Need some help getting things going? The Conversation Project is dedicated to helping people have discussions on end of life and has a great starter kit available on their website. Download yours here.

Caregivers In An Aging Population

Caregivers In An Aging Population

Caregivers In An Aging Population

Sally was 56 when she first decided to invite her dad to live with her. He was 80 years old and had been suffering with a slight form of dementia for a few years. Recently, his episodes had gotten worse and she decided that the time had come where she simply could not leave him on his own.  

Because she was an only child, most of the burden of care fell on her.  And while she was happy to do it, it was more challenging than she could have ever realized. Her already busy life was suddenly filled with even more responsibilities: helping him with his daily activities, accompanying him to doctor’s appointments, researching medical needs and performing tasks that were new to her. It didn't take long to reach the point where her career was suffering. While her boss was understanding, she had to reduce her hours just to be available to her father when he needed her. The financial strain was as great as the emotional one.

Sally’s issues aren't unique. So many who find themselves in a caregiver role are forced to make the same sacrifices, and the stresses can be overwhelming. And now that our population is aging quickly, these issues are only going to increase.

 The AARP estimates that by 2050 there will be only 3 potential caregivers for every person aged 80 and above. That’s a drastic difference from today’s 7-to-1 ratio.

Why the sharp decline?  In just 10 years, the oldest of the Baby Boomer generation will be slipping into their 80’s, and with them, the need for additional care. Unfortunately, with the population expected to grow at just a 1% pace over the next several years, the caregiver ratio simply won’t be able to keep up. The AARP estimates that over the next several years we’ll see a steady decline in the ratio of caregivers to older adults, with the sharpest decline happening as the Baby Boomers reach their 80’s.

What are the implications here? In the coming years, caregivers will need more support than ever before.  The greater number of caregivers will create an increased need for nationwide Long Term Services and Support.  And workplace policies will need to accommodate flexible work schedules to allow caregivers the extra time they so desperately need. In addition, care for the caregivers themselves will need to be addressed to ensure that they have the tools to take care of themselves, as well as their loved ones.  Things such as providing extra funding or tax credits to caregivers, creating more resources for caregivers to ensure they have the tools and skills needed to care for their loved ones, adjusting FMLA laws to allow for greater workplace flexibility and time off, and making adjustments to medicare and medicaid to cover caregiver coordination services are just a few of the things that can be done to avert this growing crisis.  Putting these types of resources and policies in place is crucial in the coming years if we want to support the caregiving community and our growing, older population.

NAFC's Top 8 Tips For Caregivers

Top 8 Tips For Caregivers

Top 8 Tips For Caregivers

Being a caregiver to someone you love is complicated work – it can be both rewarding, and draining all at once. The emotional and physical demands placed on a caregiver are many. Add to that the financial strain that many caregivers face and it’s easy to see how caregivers can become a bit stressed out at times.

Read below to learn our Top 8 Tips for Caregivers.

Learn To Take Care Of Yourself First.

Before you can even begin to care for someone else, you need to ensure that your own needs are met. Eating well, getting good sleep, and exercising regularly will help you stay healthy and energized. And don’t forget about taking regular breaks and time outs for yourself – it may seem like an extravagance, but fitting in a little alone time can do wonders for your mood.  You’ll come back feeling refreshed and ready to take on the daily demands of caregiving.

Get Organized.

Medical files, legal documents, financial information – who knew that caregiving would involve so much paperwork! Get organized right from the start and create a system that will allow you to keep track of all your important records.  Also, speak with your loved one and make sure that you know their wishes for end of life care and make sure you get any paperwork needed in order.

Get The Help You Need.

There are lots of services out there that can help you manage the load of caregiving. Finding extra medical support, meal assistance, or even having a friend or family member help out for a few hours each week can help shoulder a lot of the burden of caregiving.

Simplify Your Own Life.

Taking care of someone else can make your other daily chores seem harder. Outsource what you can and automate everything else. Hire a cleaning person. Sign up for a food service like Blue Apron. Have your groceries delivered or set up an auto grocery list online for things that you purchase regularly. Set up automatic bill pay for your fixed expenses. Simplifying these things can help free up some of your precious time and energy, and help keep you from becoming overwhelmed.

Connect With Others.

Things are always easier when you have someone else to talk to. Sign up for one of the many online networks available to caregivers and chat with others who understand. You may even be able to find a local support group in your area. Here are some great networks to check out:

Find Ways To Connect With Your Loved One Daily.

With all the routine demands of caregiving – bathing, feeding, managing medications – it can be easy to forget one of the most important things an aging loved one needs – human connection. Don’t get so caught up in the daily demands that you forget to spend quality time with your loved one. Taking daily walks, reading or listening to audio books, playing card games, looking through old pictures or even just watching a favorite television show together can help make your loved one feel loved and connected. And telling them how much you love them will never get old.

Learn About Your Loved One’s Condition.

Learn as much as you can about any conditions that your loved one may be dealing with. Knowing what to expect and how to handle it can make a world of difference.

Put Yourself In Their Shoes.

Caregiving can sometimes be a thankless job, and it’s easy to see how frustrations can morph into feelings of bitterness or resentment toward your loved one. But the saying “Treat others how you would like to be treated” applies in this situation as well.  Think about how you would like to be cared for and try your best to understand your loved ones feelings and what they are going through.

Choosing The Right Long-Term-Care Facility For Your Loved One

Choosing The Right Long-Term-Care Facility For Your Loved One

Choosing The Right Long-Term-Care Facility For Your Loved One

Making the decision to place a loved one in a long-term care facility can be difficult. Feelings of guilt and sadness are often present, despite how necessary the decision may be. But there are many situations where a long-term care facility can provide more help to a loved one than you can – and it doesn’t have to be as grim as many imagine it to be.  In fact, there are many wonderful facilities in the US that provide excellent care.  Be sure to visit the home, or have a trusted friend visit one if you are unable to, and keep this list of things to consider when reviewing your options. (Summarized list from The Centers for Medicare & Medicaid Services’ Your Guide To Choosing a Nursing Home or Other Long-Term Care)

Things to Consider When Choosing A Care Facility

Quality of life

  • Will my loved one be treated in a respectful way?
  • How will the nursing home help my loved one participate in social, recreational, religious, or cultural activities that are important to him/her?
  • Do the residents get to choose what time to get up, go to sleep, or bathe?
  • Can the residents have visitors at any time?  Can they bring pets?
  • Can residents decorate their living space any way they want?
  • What is privacy like?
  • Are the residents able to leave the premises?
  • What services are provided? Are they the services my loved one needs?
  • Can we get a copy of any resident policies that must be followed?

Quality of care

  • What’s a plan of care, who makes it, and what does it look like?
  • Will my loved one and I be included in planning my care?
  • Who are the doctors who will care for my loved one? Can he/she still see their personal doctors?
  • If a resident has a problem with confusion and wanders, how does the staff handle this type of behavior?
  • Does the nursing home’s inspection report show quality of care problems?
  • How often are residents checked on and what is the average wait time if they need assistance?

Location & Availability

  • Is the nursing home close to family and friends?
  • Is a bed available now, or can my loved one’s name be added to a waiting list?

Staffing

  • Is there enough staff to give my loved one the care he/she needs?
  • Will my loved one have the same staff people take care of him/her day to day.
  • How many Certified Nursing Assistants are there and how many residents is a CNA assigned to work with during each shift and during meals? (Note: Nursing homes are required to post this information.)
  • What type of therapy is available at this facility?
  • Is there a social worker available? Can we meet him or her? (Note: Nursing homes must provide medically related social services, but if the nursing home has less than 120 beds, it doesn’t have to have a full-time social worker on staff.

Food & Dining

  • Does the nursing home have food service that my loved one would be happy with and can they provide for special dietary needs? 
  • Does the nursing home provide a pleasant dining experience?
  • Does staff help residents eat and drink at mealtimes if needed?
  • Are there options and substitutes available if they don’t like a particular meal?

Language

  • Is my loved one’s primary language spoken by staff that will work directly with them? If not, is an interpreter available to help them communicate their needs?

Security

  • Does the nursing home provide a safe environment? Is it locked at night?
  • Will my loved one’s personal belongings be secure in their room?

Preventive Care

  • Do residents get preventive care to help keep them healthy? Does the facility help make arrangements to see specialists? (Note: Nursing homes must either provide treatment, or help make appointments and provide transportation to see a specialist.)
  • Is there a screening program for vaccinations, like flu and pneumonia? (Note: Nursing homes are required to provide flu shots each year, but residents have the right to refuse if they don’t want the shot, have already been immunized during the immunization period, or if the shots are medically contraindicated.)

Hospitals

  • Is there an arrangement with a nearby hospital for emergencies and can personal doctors care for my loved one at that hospital?

Licensing & Certification

  • Is the nursing home and current administrator licensed in my loved one’s state?  (Have they met certain state or local government agency standards?)
  • Is the nursing home Medicare- and/or Medicaid-certified? (Note: “Certified” means the nursing home meets Medicare and/or Medicaid regulations and the nursing home has passed and continues to pass an inspection survey done by the State Survey Agency. If they’re certified, make sure they haven’t recently lost, or are about to lose their certification.

Charges & fees

  • Will the nursing home tell me in writing about their services, charges, and fees before my loved one moves into the home? What is included and what is extra? (Note: Medicare- and/or Medicaid-certified nursing homes must tell you this information in writing.) 

To read the full guide, click here.

Compassionate Care: How To Take Care Of An Aging Loved One

Caring for an aging loved one.

Caring for a senior--whether it’s a loved one or a client--can be an overwhelming task at times. It’s a stressful job, to say the least, and it can take a toll on your mood, your mental and emotional health, and your physical well-being. If you’re caring for a loved one, there’s added pressure due to your ties, and if you’re caring for a client, it’s important to make sure they’re well taken care of and that their family is satisfied with your work.

"There's a continuum of ways people become caregivers. Often a loved one suffers a stroke, accident or fall or a chronic condition worsens, and people are thrust into a situation. But few plan for it as well as they could," says director of operations for the Family Caregiver Alliance: National Center on Caregiving Leah Eskenazi.

Here are some simple things you can do to make sure you give the most compassionate care possible to the senior in your life.

Consider your options

When a family member needs assistance, it can be difficult to think about all the options available to both of you. Is it financially viable to keep them in their own home? Will they require 24-hour care? Moving a loved one into your home is a huge step and could have repercussions on your relationships with your family members and your own financial status. Lay out all the possibilities and give it some thought before committing to a decision

Lay down some guidelines

Whether you’re caring for a family member or a client, it’s important to have boundaries. Both of you will benefit from setting some rules, such as what you can and can’t do physically, what your schedule will be like, and what you expect from both the senior and their family members. This can help keep your relationship respectful and will ensure you don’t experience burnout.

Ask for help

If you’re caring for a loved one and most or all of the responsibility is falling on your shoulders, it’s time to ask for help. Keep in mind that you are just one person and it’s impossible to do it all alone without experiencing exhaustion and stress; don’t allow guilt to stand in the way of asking for assistance. Let your family members know that you need someone else to step up and help, and make an effort to support one another as much as possible.

Do some research

There are several groups around the country that will assist seniors who are ill or unable to leave their home; church groups, senior centers, and caregiver programs are all great resources to access when you need a break. Some of these will provide rides to doctor appointments, help with grocery shopping or bringing meals in, or even do light housework. When you need to take a breather, let one of these groups come and help you out.

If you’re going to be caring for a loved one in your own home, you’ll need to prepare the environment first. This can be very involved, so do some research or seek the guidance of professionals.

If you’re caring for a parent or other loved one, it may become necessary for you to become power of attorney at some point. Discuss the possibilities with your family and find out what your loved one wants when it comes to hospital stays; seek the counsel of a lawyer to draft a living will. This will be invaluable should the unexpected occur.

Tools to keep around if you care for someone with incontinence

Tools To Keep Around If You Care For Someone With Incontinence

If you are a new caregiver to a patient with incontinence or your family member just recently developed bladder and bowel problems, you’ll want to consider keeping supplies at the ready to help you address this condition.

In many cases, your family member or patient won’t be entirely comfortable with their situation and may attempt to thwart help or assistance. If that engagement leads to leaks or uncomfortable situations, it’s your job to be prepared and help them clean up in a dignified way.

We recommend having the following supplies ready or knowing where to get them easily:

  • Rug pads: Individuals with nocturia or overactive bladder are very susceptible to falling from incontinence in an effort to get to the restroom quickly. Make sure the rugs in the house and bathroom are padded underneath to avoid slippage.
  • Absorbent products: Many times, leakage or bladder spasms occur when the individual is in transfer, or is moving from place to place. Be at the ready to respond to these needs with an appropriate product.
  • Water: Dehydration can be a catalyst for frequent urination and in some cases, urinary tract infections. Avoid your patient or family member experiencing either by encouraging and modeling enough water intake. Click here for guides on how to drink more water.
  • Protective Bedding: Waterproof mattress covers, bed pads, and extra sheets can all make a huge difference when cleaning up a wet bed.
  • Bladder or Bowel Diary: Managing physical and dietary responses to bladder and bowel concerns is a proven way to help manage incontinence. Help your loved one or patient track their urination, bowel movements, and intake of food and water by keeping the diaries available and ready for updates. Download the diaries here.

We hope these tips can help you be the best assistant in their journey. Are there any tools you’ve already found helpful to have?