There’s an App for That – Caring Village

In 1996, Hillary Clinton published a book called, It Takes a Village: And Other Lessons Children Teach Us. If you were alive then, you know that the book was about how it takes an entire community to raise children, not just the parents or grandparents, guardians, teachers, caregivers, etc. I would also argue that it takes a village to manage a chronic or serious illness. While the primary responsibilities always seem to fall on one person, the journey wasn’t meant to be traveled alone. It includes doctors, nurses, aides, therapists of all kinds, family members, friends, clergy and many others you may never meet.

I think that many people are so willing to help but (a) either don’t know what to do; or (b) are too busy to do it. Caregivers are also sometimes reluctant to ask for help or cannot give much notice about a request. I know I had the sweetest friend offer to bring food to my house – but not for three weeks! I had no idea what would happen a month from that moment. Things were just so unpredictable at that time. I politely declined.

Things have changed in the past few years, and technological advances give caregivers options to communicate and coordinate with family and friends about care needs. Although there really doesn’t appear to be a one-size-fits-all app out there, we’ll profile several that you can use in tandem or alone to fit your needs.

The first app I wanted to mention is Caring Village. It is free and available for both Apple and Android phones. It also has an online dashboard if you prefer working from a computer.

The application allows you to set up a community, or “village,” for your loved one that includes calendars, to-do lists, a journal, a medication list, a secure messaging feature and a place for documents. As the administrator, you can assign different roles for people you allow to join, which determines their level of access to the information.

Here are some things I thought that were interesting about the app:

• Members – You can ask members to add a photo to their profile so you know who they are. You may not know what your father’s colleague at work looks like. The first time he offers to drive him to the doctor, you can take a quick pic or ask him to upload his photo.
• Wellness Journal – This allows you or others to add a few notes each day (or whenever) about how your loved one is doing. It also allows photographs. When your loved one’s health changes constantly, this could be a helpful tool to keep things accurate.
• Medication List – This would be especially useful when medications are changing or your loved one moves between care facilities. You need to keep track of inventory and expiration dates. Photos are allowed here as well.
• Calendar and To Do Lists. The calendar is nice for the “village” to know of upcoming doctor appointments or procedures or if volunteer items are needed. The To Do Lists have reminder alerts for you and can be delegated to others (ask for a volunteer) for assistance.

It would be a good idea to consider overall how you intend to use the dashboard/app. Even with the most restricted level of membership (“Friends”), there is a great deal of access to the app’s information. For example, if you plan to load sensitive documents to the site (e.g., doctor’s notes from a recent appointment, Durable Power of Attorney, etc.), you may not want a neighbor who offered to drive your husband to the pharmacy to see that information. You either have to choose not to use the document feature or restrict who becomes a member. There is helpful chart in the Help Center about Role Access.

Have you used the Caring Village app? If so, what was your experience?

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Caring Village, LLC does not sponsor You Don’t Have to Join the Circus (to my knowledge) and was not aware of this post prior to today.

(Photo by Cristina Gottardi on Unsplash)

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I Thought Medicare Paid for That!

If your loved one is 65 or older, he or she may use Medicare to pay for healthcare costs. Medicare is an age-based health insurance program run by the federal government and paid for by employee and employer payroll taxes. While Medicare is very much like regular health insurance, participants (and caregivers) are sometimes surprised by what is not covered in the program.

Earlier this year, Fidelity estimated that a 65-year-old couple today would spend almost $300,000 USD during their retirement to pay for healthcare costs. As a caregiver or concerned family member, it is important to know what contributes to the costs of uncovered medical expenses in retirement. Here are the most common exclusions from Medicare your loved one may encounter:

Long-term care facilities. While Medicare Part A may pay for skilled nursing under certain conditions, the coverage is short-term. Expenses for long-term care (or extended care) facilities such as independent living, assisted living, skilled nursing or memory care units are not covered by Medicare. They may be included in a long-term care insurance policy, Medicaid or possibly other programs (e.g., veterans benefits).

Vision benefits. Eye exams are not included in Medicare, nor are eyeglasses or contact lenses. However, cataract surgery is reimbursed by Medicare, Part B.

Dental services. Dental exams, procedures and supplies are not part of Medicare.

Prescription Medication. Prescribed medications are covered if your loved one signed up for Part D, which is an additional coverage option. However, even if he or she has Part D, there is something known as the “donut hole.” This is a gap in coverage, but it is not as costly as it used to be. In 2019, when your loved one’s drug costs exceed $3,820, he or she must pay an additional $5,100 before reaching the catastrophic coverage level (i.e., 100% coverage). During this “donut hole” gap period, he or she will pay 5% of the drug cost for the remainder of the year or until reaching the catastrophic level.

Alternative medicine or therapies. Medicare does not pay for homeopathic remedies, chiropractic medicine, acupuncture, massage therapy, or other types of alternative treatments.

Medical Alert Systems. If your loved one has an alert system (wearable or in their home), this is not covered by Medicare.

Medical Tourism. Medical care outside of the U.S. is not included in Medicare. This includes personal travel, having a procedure elsewhere at a lower cost or treatment that is considered experimental in the U.S. However, some supplemental policies include expenses incurred outside of the U.S.

Hospice/palliative Care. Generally, hospice care is not covered unless ordered by a doctor for a terminal illness.

Some Healthcare Providers. Healthcare providers, including physicians and specialists, can “opt out” of the Medicare program. It does not mean that your loved one can’t continue go to that particular physician. However, the service will not be paid for by Medicare and will have to be paid entirely by your loved one. This is especially important to know if your loved one is about to enroll in Medicare. If his or her current physician does not accept Medicare, a good doctor will let the patient know well before age 65, so that he or she can find a new healthcare provider, if desired.

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A Final Note:

A good resource to find healthcare providers and information on Medicare coverage is at www.medicare.gov. Additionally, your loved one’s insurance provider will have information on their website as well.

The exclusions listed above apply to “original” Medicare. If your loved one has an alternative plan such as Medicare Advantage (perhaps provided by a previous employer) or some other arrangement, some of the items above may be included as part of their program. It is also important to not confuse Medicare with Medicaid. Medicaid is a means (income)-based insurance plan that can be used separate from, or in conjunction with, Medicare. What is covered under Medicaid depends on the state where your loved one lives. However, certain things, like skilled nursing, are covered by Medicaid.

Caregiver Checklist for Holiday Hospital Stays

Independence Day is next week. While not one of the major holidays like Christmas, New Year’s or Easter, it can still be…quiet…around the hallways of a hospital or extended care facility.

Where I live in the South, this is prime vacation season. The airports are busy, the commute is light, and the weather is hot! If you have the ability to do a little pre-planning before next week, here are some things to consider for your caregiving routine before the long weekend:

• Doctor’s schedule. Will your doctor or specialist be working during the holiday or long weekend? If not, who will be covering in his or her absence? Make note of those changes.
• Your schedule. If you are going to be out-of-town for the holiday or long weekend, do you have someone to visit and check on your loved one a few times while you are gone? When will you go over the routine, condition, doctors, special care concerns, etc. with your substitute caregiver?
• Your contact information. Whether you are in-town or out-of-town, you may want to check in with the nursing staff at the hospital or the extended care executive director or medical director on duty during a holiday weekend. Even if you are a “regular” among the nursing staff, there may be different personnel covering a holiday weekend. It never hurts to introduce yourself or ensure that everyone has your contact information readily available if you are needed. Yes, I know it’s in the admissions records, but a gentle reminder may ease your concerns.
• Hotel arrangements. If you live out-of-town and stay in a hotel, motel, Airbnb, etc. while your loved one is in the hospital, confirm your reservation – or make a reservation – for the holiday weekend.
• Extra activities. Depending on your loved one’s interests, concentration and energy levels, this might be the perfect time time to bring a new book, magazine, movie or activity they can do in the hospital room. The same goes for you. You may not be able to go to the shore this weekend, but you can download the latest summer beach read that doesn’t require a lot of attention on your part or scroll through Instagram to see what people are wearing to the beach.
• Visits/Calls/Video Chats. If your loved one is up for visits or phone calls, ask a good friend or family member to call or stop by. If you or your loved one has a phone or tablet with video-chatting capabilities, this could be a nice alternative, too. While you may be concerned about your loved one seeing others out enjoying their lives when your loved one cannot, you might be surprised at the mood booster such a “visit” can be.
• Healthy Snacks. The hospital shops, cafeteria, etc. may be open as usual, or they may also have reduced hours. If that is the case (or if you just want to do something different or special), you can pack a lunch bag with special treats: a sandwich, string cheese, yogurt, fruit, nuts, chocolates or anything else that is easy to pack for the day.
• Fireworks or Holiday Events at the Hospital. One year, my mother’s room was on the side of the hospital where we could actually watch the downtown Dallas fireworks. Ask around to see if there are fireworks displays close to the hospital that patients can watch. There might also be a parade on a nearby street or something going on in the hospital you and your loved one can attend (e.g., a patriotic concert by a high school choir or a community band).

For those of you who are not able to plan as far in advance, this can simply be an opportunity to be aware of the upcoming holiday and to be thinking of backup plans – especially if you, or people you rely on to relieve you for your loved one’s care, will be out of town for the long weekend.

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I saw this quote for Independence Day and thought it perfectly depicted the spirit of a caregiver as well. Happy Birthday, America!

“America was not built on fear. America was built on courage, on imagination, and an unbeatable determination to do the job at hand.”

–Harry S. Truman

How Much Should Caregivers Share on Social Media?

Social Media is a part of most peoples’ daily lives. It is how we interact in our relationships and obtain information. For you to not use Social Media as part of your caregiver updates might be challenging today, although not impossible. However, before you post on Facebook that riveting photo of your loved one’s 35, albeit dissolvable, sutures across his leg, you may want to discuss what is shared about his surgery and what is kept private.

Here are a few reasons for possibly showing some restraint:

• Do you and/or your loved one want unsolicited advice? It just seems like human nature that we automatically want to tell someone about what happened to our brother’s aunt’s sister’s neighbor’s dog’s cousin who had the same thing and died from it two months later. I’m embarrassed to admit that I’ve done this, too. It is obviously meant as a desire to help. However, if you and/or your loved one don’t want, or need, to hear these stories, you may choose to keep some of the details of his or her condition private – at least, for a little while.
• Serious illness is sometimes not pretty. Let’s be honest, serious illnesses are not easy on the person who is sick or on the one who has to watch them go through it. After awhile, a caregiver can become desensitized to even the toughest situations – because you have no choice. I have seen people write or talk about their loved one’s vomiting, diarrhea, fainting, nakedness, hallucinations, odors, adult diapers and all kinds of other things as if they were discussing the weather. If you have gotten to that point, you might want to consider having someone you trust be a sounding board for broader Social Media posts before you share something that might later embarrass you or your loved one. While I’m not about sugarcoating the truth or hiding the very real suffering involved in serious illnesses, you may want to reflect on where your line is between transparency and the dignity of your loved one.
• Do you have all the facts? If you receive bad news or difficult information, it may be better to take a little time to process what you’ve heard before sending a message out on Social Media. This might be a good time to also allow someone else to speak on your behalf who has some distance from the situation and can contact the right people at the right time.
• Is your loved one still working? If your loved one is on a leave of absence from work and/or on short-term disability, employees are generally expected to check in during their absence. Most employees want to keep those conversations professional and factual. However, if colleagues have access to Social Media posts about your loved one, you should consider what details are being shared with them. You would be amazed what people tell their manager about what they see on Social Media (see the second bullet-point above). If you include work colleagues on the Social Media account, you need to assume the information may (and likely will) get back to your loved one’s boss – no matter how well-intentioned their motives may be.

In my experience, my family released information about my mother based on a tiered system. A small group was part of the inner circle and had access to the most information. The next tier was slightly larger, had fewer details but knew about appointments, her location, etc. The final group was the largest and was made up of neighbors, friends, coworkers, church members and extended family. This group receive frequent updates on her condition, both good and bad, but not with excessive details.

Given some of the apps and tools available today, I think there are ways to differentiate the intensity of the message so that the right information reaches the right people in your loved one’s life without sacrificing the level of privacy you may wish to maintain. We’ll discuss some of those tools in upcoming articles.

How have you used Social Media in your caregiving duties? Do you think privacy is even important today?

A Free Resource for Caregivers

If you are working for a medium- to large-size employer, you probably have access to an Employer Assistance Plan (EAP). If so, it is worth checking out. An EAP is like having your own social worker – and usually at no cost to you.

If you are not familiar with this benefit, an EAP is part of an employer’s behavioral health program and is ordinarily delivered by independent resources, most likely the employer’s insurance provider. The service is commonly free of charge to employees and is confidential.

Many plans offer a variety of assistance that could be helpful to you as a caregiver. This could include a dial-in telephone number for referrals as well as an website filled with information for caregivers, such as assessments, checklists and webinars. Some examples of referrals are:

• Elder care living arrangements. An EAP can help you with, or refer you to, an agency that can provide a list of living facilities for your loved one. You provide them with information such as location, level of independence/assistance needed, anticipated move-in date, etc., and the agency creates a list of possibilities. Some will make appointments for you to visit the facilities so that an agent is waiting for you when you arrive.
• Home health providers. Although you may already have referrals from doctors or hospitals, if your loved one lives in an area where the hospital or doctor does not practice, this referral service might be helpful.
• Counseling. Most EAP programs provide two or three free counseling sessions with a licensed therapist or social worker. That may be enough time for you and the provider to determine if you would like to continue with the counseling or if you just needed a few sessions. The provider can refer you to a licensed practitioner for additional sessions.
• Legal assistance. Caregivers can face a barrage of legal questions from living wills to property deeds. This service may be able to answer basic questions for you or refer you for more involved situations.

Other tools available to you if the EAP has a website include:

• Assessments. How are you coping with stress? Are you depressed? Is your loved one’s home safe?
• Webinars. Caregivers do not always have the ability to attend classes for self-improvement, information or enjoyment. See if your EAP offers webinars that you can watch at a specific time or location that is convenient for you.
• Discounts. You may be eligible for discounts on some of the services offered outside of the EAP (e.g., tax assistance, home cleaning, etc.). Don’t overlook these.

Every employer’s plan is different, but it is worth seeing what is available to you as an employee to make your caregiving responsibilities easier while you are working.

Have you used your employer’s EAP to help with caregiving?