Care at Home: What to Consider

You may be trying to decide if you should bring your family member from a care facility into your home or you may have come to the realization that it is time to get help taking care of a family member. This is the perfect time to start doing the research on home-based care and what to consider. It’s a good time to talk with family members and create a plan. If you don’t need help immediately, this is your opportunity to prepare. The optimum time to research the options is before the help is needed, but life doesn’t always allow this luxury. NPR and PBS partner, WHYY, talked to family members who are ready to make the change to home-based care and discuss the challenges, ‘Nursing homes as we know them are over’: COVID-19 fuels push to home-based care.

“As families watch nursing homes struggle to contain the virus, many have started to consider bringing health care for their loved ones into their own homes.”

According to the 2020 Caregiving in the US report, one in five Americans are family caregivers. AARP and the National Alliance for Caregiving, worked together to produce a comprehensive report on what caregiving looks like in America, the faces, the changes, and the challenges. A shift to caring for a family member at home had already begun before the COVID19 crisis. The report revealed that 40% of family caregivers indicated that their care recipient lived with them. This is up 5% from 2015 when that number was only 35%. The conversation about providing care at home is not new.

“’People express the desire to be able to age in place as much as possible, in their homes and in their communities,’ said Kevin Hancock, deputy secretary of the state Department of Human Services’ Office of Long-Term Living. ‘That view has underwritten the development of long-term care services really for about the last 25 years.’”

Questions to ask

“’At-home care does depend on informal caregiving from family members or friends,’ said O’Connor. Though loved ones may have had more time than usual during the pandemic as shutdowns rendered many jobless, there is no guarantee that will continue to make the model sustainable, she noted.”
Nina O’Connor, chief medical officer for Penn’s home health care

It is not an easy decision because there is much research and preparation required before providing care for a family member at home. For the experience to be sustainable, it is critical to do the work upfront. Here are some questions to ask and topics to research to be well informed of what the caregiving experience at home will involve.

Is it financially feasible to care for your family member at home?
Who will provide the care that the facility has provided?
If the family will be providing the care, do they have the time available for the needed level of care?
Are family members adequately trained to provide the care required? If not, how will they receive that training?
Is special equipment needed?
If outside assistance is required, have agencies that provide medical and non-medical care been researched?
How will medicine be managed?
What will be the likely progression of the disease, and what will the care needs be down the road?
What community resources are available to support your efforts?
What plans for emotional support do you have in place?

Home Health Care vs Home Care

There are a few steps that will help you narrow down the options and begin the research. First, identify the type of services you will need. There are two types of care agencies with a similar name, and it is important to know the difference. One is referred to as home health care which offers “skilled care” services, and the other, home care which offers “non-medical care” services. Non-medical care does require skill and training, but not the same training as a nurse or therapist. Here is a breakdown of the basic differences between these two agencies.

Home Health Care

Doctor’s orders are needed to start services with a home health agency
Temporary service, usually following hospitalization or injury
Services are provided by a nurse and/or therapist
Designed to help the patient regain independence
Covered by Medicare with a doctor’s order

Home Care

Personal Care Services:
- Help with Activities of Daily Living known as ADL’s. These are non-medical and considered foundational to independent living. They include:
  - Dressing
  - Bathing
  - Toileting
  - Shaving
  - Eating
  - Ambulating
- May assist with
  - Light housekeeping
  - Exercise
  - Changing bed linens
Homemaker Aids help with Instrumental Activities of Daily Living known as IADL’s. These are non-medical activities, important to independent living, but not critical:
- Light housekeeping
- Prepare meals
- Grocery shopping
- Errands
- Laundry
- Companionship
- Medication reminders
Home Care Nurse services may include:
- Administering medication and injections
- Monitoring vital signs
- Wound care
- Other medical therapies

Getting Organized

Determine needs

List the services that you need. Think about the conversation and possible questions as you begin to prepare for the meeting or phone conversation with an agency representative or private hire candidate. For example, consider whether you would like transportation included in the services, whose vehicle would be used, the aide’s or your family member’s vehicle? Will your family member require help with ADL’s or more companionship-type services? Will the agency work with you on matching an aide who is a good fit with your situation both for needs and personality? What training is provided for the staff? Which background checks are conducted before hiring? If your family member has a pet, is pet care included? How does the communication process work so that you will be able to stay informed about care and concerns?

Begin the research

Once you decide and list the details of the help you will need, you may begin the research to determine the best resource of help for your situation. Think about and list the questions that you will want to ask the agency representatives or candidates to prepare and make the most of those conversations. Regardless of which path you take, it is important to do research and compare organizations. Get referrals, recommendations and read reviews. Understanding your needs and wishes will help you determine if the agency and/or individual is a good fit.

Consult with an Elder Law attorney

Once you understand your parents’ wishes and have determined the care that is needed, an Elder Law attorney can help ensure that:

The financial steps you take are not in violation of Medicaid or Medicare guidelines.
Your family member’s money is preserved and used for their benefit and healthcare needs.
Documents required by the state are complete and current
Health Care POA’s are in place so that your family member’s care wishes are known and will be fulfilled if they cannot communicate them.
You can benefit from advanced care planning so that your family member’s end-of-life wishes are upheld through advanced directives.

There are many specialty areas under the Elder Law umbrella, so it is important to find the attorney who best fits your requirements. Locate an Elder Law attorney at the National Academy of Elder Law Attorneys or get a referral. Meet for an initial consultation to determine if the attorney is a good fit for your family and your situation.

The options

A home care agency

The benefits of using an agency vs. hiring a private aide are many and significant. FirstLight Home Care of Pinellas County is a home care agency that I personally recommend in the Tampa Bay area. The owners, Steve and Jennifer Rattner, developed and operate a business that is invested in high-quality care for their clients and family members. This investment is evident in how the staff supports and interacts with the client and family caregiver. It is also evident in the quality of staff that they hire and the level of training that they provide. Check out their website to learn and better understand the breakdown of available home care options. Here are a few of the reasons to select an agency vs. hiring privately:

The agency staff receives training and must stay current on certifications
- Proper training reduces the chance of injury to the care recipient as well as the aide
- Certifications may include CPR
The home care agency has insurance to cover mishaps
The caregivers have cleared background checks (Verify that the agency conducts national background checks and state investigations.)
Taxes are paid by the agency rather than paid by the care recipient or family caregiver.
If an aide can’t fulfill the shift, another aide will be sent.
The agency can offer direction to the aide and handle performance concerns that may arise.
You do not need to locate the caregiver candidates.
You will be able to identify what personality types are a good match for your care recipient, and the agency can match the best aide or aides to that type. For example:
- A loved one who likes to chat might prefer a more talkative aide, and the reverse is true. Your family member may prefer silence and a more quiet experience.
- Someone interested in the same hobbies could be a great match, painting, gardening, puzzles…
- Your family member might enjoy home-cooked meals, and an aide who likes to cook may appreciate the opportunity.

A private aide

Locating candidates

Sometimes, hiring a private aide is the best option. There are many areas in the country that an agency does not support, and it is necessary to locate one or more individuals to help with care. You might turn the list of needed services into a reverse resumé. List the qualifications that are needed and maybe a bit about your family member’s hobbies and interests. From here, you can begin to hand them out to a church, hospital, senior center, or other agencies that employ or are in contact with staff or volunteers who help older adults.

Interviewing and hiring

Plan the interview and focus on examples of how the candidate has managed situations in the past. For example, you know that your mom is a picky eater. You can ask how the interviewee has handled someone who wouldn’t eat the meals that were provided. You can learn a lot about someone when you hear about their past experiences rather than asking how they would handle a situation. This approach will help you get a feel for their style and if they might be a good fit for your loved one.

Ask the candidate for a list of references and call the people on the list. Ask the references for specific examples of when the candidate demonstrated the skills that you desire in the aide. Tell the reference what the aide will be doing and ask for an example that indicates they would be a good choice for the position. You might ask why the reference would recommend the candidate and then ask for an example of the reason offered. Past behavior is an indication of future behavior. Specific examples will help you understand if the candidate’s qualities and characteristics are a good fit for you and your family member.

You will likely be managing the activities of the aide, and a good working relationship will be crucial. You might ask how they prefer to receive instructions and communicate back and forth, verbally or in writing. Have them tell you about when all tasks were completed and the next steps that were taken. You’ll want to get an idea about the initiative that will be taken. It may be that your mom or dad will resist assistance at first. Letting them know that the aide is there to help you, may smooth the transition from you doing all of the work to sharing the load. It may be that you need to have an agreement with the aide that certain tasks need to be accomplished regardless of the instructions from Mom or Dad.

Managing the process

Resistance

Your loved one may present obstacles. They might be resistant to having someone in the home, might not accept that help is needed, or disagree with how assistance is provided. Once a relationship is developed, your family member will likely be less resistant, and the routine will be comforting. When the right match has been made, your family member might even look forward to the visits.

Whether you are working with an agency or have hired a private aide, it’s not easy having new folks in the home, and communication will minimize the frustrations that might arise. If something is being done that makes you uncomfortable, start with questions to better understand the reasons. Then, ask yourself if the outcome is acceptable. The aide’s process may be a different way of accomplishing the same objective. Letting go of control doesn’t mean letting go of standards. While we might feel that we are the best caregivers, we can also acknowledge that others are very effective at providing care, and we do need their help.

Communication

A notebook to share notes back and forth might work well to communicate questions, answers, concerns, and new information. A daily or weekly checklist may help everyone stay on track. Texting or phone calls may be the preferred way to communicate. No matter the method, the important thing is to keep each other current, and if you have more than one aide helping with care, it is even more critical that the communication is consistent.

Find opportunities to show appreciation regularly. Caring for another person is both rewarding and challenging. Check in with them and see how the arrangement is working for them. Is there anything that they wish were different? Be specific with your praise and appreciation. Let them know what they are doing well and why it is meaningful to both you and your parent. When you have concerns, share them with respect and be specific with what changes you are requesting and the reasons, if you can share them.

Technology

Some apps allow you to log and share a family member’s medical information. Care Tree is an example of an app that allows the family caregiver to track appointments, medications and share information with family members and the care team. Another helpful app is Abridge. It is designed to record the conversation with the doctor and produce a transcript. Medical terms will be highlighted, including a diagnosis, treatment options, and medications. Definitions and explanations are offered, along with links to trustworthy sites.

An Aging Life Care Professional®

A Certified Aging Life Care Professional (previously known as geriatric care manager) offers comprehensive services that include assessing needs, creating an individualized plan of care, coordinating, and overseeing care. Some agencies offer a host of other options that complete a well-rounded package. This is a great option for providing care for a loved one from a distance or if your situation does not allow you to be involved in full-time care. A Certified Aging Life Care Professional has a tremendous amount of education and training in social work, nursing, gerontology, psychology, or public health. They are a member in good standing of the Aging Life Care Association (ALCA), and Advanced members hold one of the four approved certifications such as Certified Case Manager (CCM) and Care Manager Certified (CMC).

Oversee all care needs

An Aging Life Care Professional® will manage more than just the care required in the home. They will take responsibility for overseeing all care needs. Their objective is to help your loved one age in place safely while maintaining a certain level of independence. This comprehensive service runs about $100-$250/hour. See the “How to Pay for Care” section of this post for methods that may be available to cover the costs. One option may be that the family may choose to pool resources for this level of care.

Not all Aging Life Care Professional agencies offer all of the services mentioned below, so it’s important to perform a thorough interview via phone or in person. Advanced Senior Solutions is an agency in the Tampa Bay Area that offers many services to fully manage care for a family member. Locate a Certified Aging Life Care Professional in your area.

Responsibilities and services may include:

Medical
- Assessing needs and developing and implementing a care plan
- Attending doctor’s visits with client, ask informed questions, take accurate notes
- Advocacy
- Medication management
- Nutritional counseling
Understands and communicates clients wishes
- Ensures the client’s needs are adequately met by all providers involved
- Assistance with the navigating health care systems
Financial
- Oversee bill-paying along with client or power of attorney oversight
- Reduce exposure to scams
- Help with insurance applications and claims
- Work closely with the client’s financial planner or accountant
Communication with families
- Help with problem-solving
- Help with family conflicts surrounding care
- Education and coaching
- Family liaison for communication to distant family
Arranging for and overseeing home care services
- Interview and retain home care services
- Scheduling of care providers
- Setting a plan of care in place and oversee that it is being followed
A network of local resources for all aging needs
- Legal: Referrals to local:
  - Elder law attorneys
  - Estate planners
  - Medicaid and VA accredited attorneys
- Financial
  - Accountants
  - Financial Planners
  - Local programs that may offer financial assistance
  - Government benefits specialists
- Home-Based Services
  - Homemaker companion vs. Home Care
  - Arrange for medical equipment or home modifications
  - Arrange for transportation services
  - Coordinate meal delivery or grocery delivery services
  - Arrange for and oversee home maintenance services
- Help with housing and relocation
  - Needs assessment for the appropriate level of care, preferences, and budget
  - Research and recommend the most appropriate alternative living options
  - Unbiased, objective recommendations
  - Coordinate and oversee the entire relocation process

Hospice

Hospice agencies provide an array of helpful services when a diagnosis of a terminal illness has been given. The care is designed to manage symptoms and enable the care recipient to remain at home and maintain quality of life for as long as possible. The services include coordinated care to address the care recipient’s physical, emotional and spiritual needs and those of the entire family. The Hospice Foundation of America offers information on how to access hospice care. Services may include:

Care team visits to the patient’s home
Medication for symptom relief
Medical equipment
Physical and occupational therapy
Speech therapy
Short-term respite care and short term inpatient care
Grief and loss counseling

How to pay for home care services

Paying for in-home care can present a challenge. As discussed earlier, consider speaking with an elder law attorney and a financial advisor who is familiar with elder issues. Here are some possible avenues to pursue.

One in four caregivers say it is very difficult to get affordable services in their recipient’s community, like delivered meals, transportation, or in-home health services, that would help with their care (27 percent rating a 4 or 5 on a 5-point scale, see Figure 72), while another 33 percent feel it is moderately difficult. – Caregiving in the US

Veterans Affairs

If your loved one is a veteran, two programs may help finance care, homemaker and Home Health Aide Care and Aid & Attendance. There are eligibility requirements. This web page is a starting place to understand VA Caregiver Support better. This page explains VA In-Home and Support Services. Contact the VA Caregiver Support Coordinator (CSC) and VA Caregiver Support Line, 1-855-260-3274 (toll-free 8 a.m. to 8 p.m. ET).

A Veterans Service Officer is also a great resource. Locate one in your state. Another resource for help with understanding the programs, eligibility, and completing paperwork is a local Vet Center. Go to the Department of Veteran’s Affairs: Find VA Locations enter your zip code, and select Vet Center in the drop-down box. Here is an example, Clearwater Vet Center. At this office, volunteers come in one day a week to help veterans and family members complete the forms required to begin services. Gather as much information as you can from as many resources as possible. Persistence pays off. Getting the process started can be frustrating, but when in place, it generally works well.

Getting VA filing assistance from an attorney

A VA accredited attorney may assist in filing for Aid & Attendance but may not charge for this work. It is against the law for anyone to charge for help filing for VA Aid & Attendance. An elder law attorney may help “at no charge.” It is important to understand that just because the attorney is trained in the process and understands the eligibility requirements does not guarantee that the claimant will be granted services.

Getting VA filing assistance from a middle man

Some organizations will allow you to start home care services while they begin completing and filing the paperwork. They will arrange care services and handle the payment with the home care agency. This will not work in your favor nor the favor of the home care company. The middleman will make a profit, and you will not receive the full allotment of benefit.

Area Agency on Aging (AAA)

The local Area Agency on Aging is a public agency that is in place to help folks age in place. They provide and share local and regional resources that include homemaker assistance, meals, respite services, and more. Information on services can be found here: AAA Locator. After an assessment, a caseworker will be assigned and will continue to work with the family with needed services and equipment. Items that may be provided by the AAA include Ensure, incontinence supplies, a lift chair, and a ramp.

Long Term Care (LTC) Plan

If your loved one has a Long Term Care Plan, take some time to read and understand the eligibility requirements. You may enlist the help of the underwriter or an elder law attorney to decipher the details. Often the plan will begin coverage only when two or more ADLs require assistance.

Family member financing

Family members may choose to combine resources and pay for in-home care. One popular arrangement is to have siblings chip in and pay the sibling who is providing direct care. Another arrangement might be for each sibling to assist with caregiving and, for those who can, provide financial support.

Reverse mortgage

A reverse mortgage provides cash in return for equity in your home without selling your home. This cash can be used for healthcare or home care services. It is important to understand the details before entering into a reverse mortgage. Here is more information from AARP about reverse mortgages.

Community and Business Services

Food and essential supplies

Meals on Wheels

Many communities offer a Meals on Wheels program, and it is a service that can be sourced through your local Area Agency on Aging.

Grocery Delivery

Shipt and Instacart are two examples of grocery delivery services that enable you to order online and receive the items at the doorstep. With some coordination, this can be accomplished from a distance. There is usually an annual fee or delivery fee depending on the service. Grocery item prices can be a bit higher than if you did the shopping yourself. Tipping is customary and can be done through the app. There are minimum order requirements. Here is an article that offers insights and several more options, 10 Best Grocery Delivery Services to Use in 2020.

Paid meals delivery services

This article, The Best Meal Delivery for Seniors, offers points to consider when choosing a meal delivery service. This US News article, Senior Meal Delivery Services, explains some important differences in options such as diet considerations and services that work with Medicaid and Medicare to offer low to no cost meals under certain circumstances. There are many options.

Amazon Fresh offers free delivery with an Amazon Prime membership. If there are non-perishable staples, consider keeping parents in stock using Amazon’s Subscribe & Save service. The benefit is that you save on each subscribed item, and delivery is free with Amazon Prime. The risk here is getting overstocked if managing from a distance, but it is a nice, low-maintenance option to stay supplied on staples. Amazon Pantry is also an option. Here is some helpful information to better understand the programs, What’s the Difference Between Amazon Subscribe & Save and Amazon Pantry?

So many options! It can be confusing to know and decide what will work best in your situation. The solution is: Research the options, try one or a combination, decide yay or nay, repeat.

Adult Day Centers

Adult day centers offer an opportunity for your loved one to get out of the home, bond with other clients and staff, participate in a program that may involve exercise, crafts, or other activities, and have a meal or two. It is an opportunity for the family caregiver to get a break and some centers offer support resources. Not all adult day centers are created equal. Transportation may also be available to and from the location. The National Adult Day Services Association is a great resource to understand better the various services offered and the steps to take when choosing a program.

Like when deciding on the best home care options, start by identifying your needs to narrow down the choices. For example, Neighborly is an organization in the Tampa Bay area that provides meals, transportation, and adult day services. The day center program caters to older adults with physical or memory-related disabilities. The description offers initial guidance to help determine if the activities and interaction would be a good fit for your family member.

Have questions ready when you visit, Questions to Ask When Visiting an Adult Day Center. A trial day or half-day may be offered to see if the center is a good fit for your family member and if your family member a good fit for the center. If your family member does not bond with the other members or connect to the activities, check into other centers. This solution does not work for everyone. The only way to know if it will work is to try. There may be a fee associated with the service, and there may be financial assistance available. VA benefits, some Medicare Advantage policies, and Medicaid are examples of benefits that may help offset the cost. Read more about the financial details here, How To Pay for Adult Daycare.

Transportation

There are likely multiple transportation services available in your area and possibly several low-cost options specifically for older adults. Start with the local Area Agency Aging and inquire about the available services. Next, check into municipal services and determine if there are special considerations made for older adults.

Respite

Respite is a break for the family caregiver when aides take over responsibilities for a period of time. The local Area Agency on Aging may offer respite services or funds. Local branches of certain disease-focused agencies such as the National Alzheimer’s Association may also have grants to fund respite care. Some care facilities offer the opportunity for a temporary stay. There may be a minimum stay requirement, such as 30 days, making the option less interesting if you are looking for a one or two-week vacation option. Of course, it would be possible to pay for the 30-day stay and only take advantage of the time needed.

Homemaking services

The Area Agency on Aging may also be able to provide homemaker services or funds for these services. These services would be the same as those completed by homemaker aides that are listed above.

Training for the Family Caregiver

Some responsibilities and tasks require training which will require research to locate the best resource for the training. The Caregiving in the US report also shed light on the need for caregiver training.

“Many caregivers could use more information on or help with caregiving topics, with 62 percent needing help with at least one topic (see Figure 74).63 Caregivers most commonly want information about keeping their recipient safe at home and about managing their own stress (26 percent each), while one in four want help figuring out forms, paperwork, and eligibility for service (25 percent).”

Disease specific

The National Institutes of Health (NIH) is the nation’s medical research agency and a great resource for information on specific diseases. It is a part of the U.S. Department of Health and Human Services. Patient Advocacy Organizations (PAO’s) are another source of information focused on a disease or diagnosis. In addition to education and training, most offer a link to local resources, suggest online communities, and provide tips on taking care of yourself. Here is a list of four agencies that offer caregiver education, training, and resources:

The American Cancer Society has resources for caregivers and family including videos on caring for someone with cancer and supporting someone diagnosed with cancer. There are links to locate local support and services, including programs that offer transportation to treatments.
The Alzheimer’s Association offers resources for caregivers about Alzheimer’s and Dementia. Advice and resources based on stages are available, as well as detailed information about the many complex issues related to caring for someone with this disease, including financial and legal support. There is extensive information about getting in-home care as well as considerations for care facilities. There is also a search tool to help locate local services.
The American Diabetes Association website provides a tremendous amount of education that will allow the family caregiver to learn about and understand the opportunities to minimize risk and maximize health benefits. Treatment and care options, as well as medication management, are thoroughly covered. Understanding complications can help the family caregiver prepare for the future.
The American Heart Association provides links to forums based on specific heart concerns. There is detailed information on heart disease conditions and stroke, treatments, and medications that can help the family caregiver better understand the whole picture and participate in making a care plan.

The Caregiving Years Training Academy

Other national organizations provide family caregiver training and may have a local representative who can provide one-on-one support. For example:

The Caregiving Years Training Academy, founded by Denise Brown
- Family caregivers can receive training and certification through the Certified Family Care Manager training program. There is a large variety of classes available.
- In addition, Certified Caregiving Consultants are current or former caregivers who have completed training to support family caregivers through consultations and resources. CCC’s are available throughout the US and internationally. Connect virtually or locate a CCC in your area.

Impromptu training opportunities

Training can take place in impromptu situations. For example, if you are in the hospital and the nurse or tech is about to perform a procedure or is sharing information, ask if you may use your camera to record the process or details. If home health care therapists are working with your family member, learn what you can to continue the work beyond scheduled therapy.

Final Thoughts

According to AARP, 10,000 people reach retirement age every day. Close to 80 million Americans were born between 1946 and 1964, the baby boomers. Over half of current caregivers see another caregiving opportunity on the horizon. Much work is needed in our communities, states, and federal government if we are to properly support the family members who will care for the aging population. The University of Pittsburg Stern Center for Evidence-Based Policy produced a report highlighting policy shortcomings and offers policy options that could create a more sustainable caregiving experience for the 53 million underserved family caregivers, Addressing the Needs of Caregivers at Risk: A New Policy Strategy.

Our analysis revealed that the existing landscape of caregiver policy is a patchwork of small, uncoordinated programs that do not yet meet the current and future needs of this population. Whereas caregivers provide over 90 percent of the long-term care received by 12 million Americans, their access to financial support, flexible employment and social supports that would facilitate and enhance the care they provide is highly limited.

It is important to engage, stay current on the issues and opportunities to act. All of us will either be a caregiver at some point or require care from a caregiver. Caring Across Generations is an organization working to change policy that will better support those providing care at home. AARP and the National Alliance for Caregiving offer advocacy information on initiatives and opportunities to get involved.

Navigating the Caregiver River: A Journey to Sustainable Caregiving is available on Amazon. Also, check out the Self-Caregiving Strategies Podcast.

Schedule Theresa Wilbanks to speak on caregiving and empower the caregivers in your workplace or community with the 12 Sustainable Caregiving Strategies.

Advice offered is for general information only; please contact your healthcare team, legal or financial advisors to guide your particular situation.