Caregiving Connect

I'm a medical social worker, and I have to say that one of the things I hear over and over again from caregivers and patients is: "I never got a call back." From their doctors, or their care-recipient's doctor or other provider. (A lot of primary care providers are physicians assistants or family nurse practitioners, especially in rural areas.) I've worked in hospital settings, as a home hospice social worker, in outpatient clinics for cancer and neurology, and after 6 years as a mental health provider in a rural outpatient primary care clinic, I'm an oncology social worker once again in a medium sized city. Let me tell you how to get the response you need.   If you have a question about the medication that was newly prescribed, do exactly what the prescriber told you to do. If s/he said call, then call, and call twice a day until you get a human who can respond.   If you need a hospital bed or a wheelchair, make an appointment to see the provider in person, or by telehealth

Nearly 60% of all Veterans are eligible for some health care benefits from the VA, but less than half actually are enrolled in VA health care. Women veterans are the least likely group to use their earned benefits.   Why? It may be because of confusion about qualifications and eligibility. It can also be a confusing system and a bit grueling to sign up. But let me tell you - it's worth it! My dad was a veteran, and once I finally got him enrolled and using VA health care benefits it was a game-changer for caring for him!    He eventually received hearing aids, excellent home-based primary care (a game-changer in terms of caring for him at home), home health aides, medications, medical equipment, ramps, respite care, physical therapy, hospice care, and more – all at no cost to him. These supports were crucial for caring for him at home until his death at age 94. Other benefits may include discounted or free adult day health services.    AARP wants to make it eas

Hi everyone, I was fortunate to work with Melinda of the Nursing School at the UW, she is the project coordinator for the Partnering with Your Healthcare Provider resource for caregivers of people living with dementia (PLWD) and other memory problems.  The resource contains a narrated presentation detailing the partnership among a PLWD, their caregiver, and their healthcare provider. The presentation provides tips and tools for making the most of medical appointments that are often too short, overwhelming, and leave caregivers and PLWD confused or unsure about what to do next.  Among these tools are three log sheets—medication, appointment, and care logs—that are demonstrated through two video scenarios to show how they can improve the partnership with healthcare providers.  The resource is available here: https://dpen.nursing.uw.edu/resources/partnering-with-your-healthcare-provider/ Partnering with Your Healthcare Provider was developed in partnership with the Uni

Family caregiving can include a wide range of roles, one of which is helping a loved one manage their finances, or taking over financial management for them. I've done both, and it was one of the most stressful aspects of caregiving for me. There are things I learned along the way that can make your experience much easier. These are some basic tips to help you manage this role.    If your loved ones set up powers of attorney for finances it will make your job much easier. Many people do this as part of their estate planning, and/or when they set up powers of attorney for health care. Having financial power of attorney will enable you to pay bills, access their bank accounts and talk with companies about money owed. etc. An eldercare attorney or estate planning attorney can be very helpful in talking over the various options.  Keep in mind, however, that some companies may not recognize your power of attorney, or require their own power of attorney paperwork to be comple

  Compound Caregiving (caring for multiple people at one time) is tough, but so are caregivers.   If you have any of your own tips and techniques that have helped you care for others successfully, please share them here!

When I started intensive caregiving for my parents, it took a while to get a handle on my parents' financial situation. The first thing I did was to create a spreadsheet that included:   Their income (Social Security, pensions, rent from a property in another state etc.) Their expenses (housing and household, medical/healthcare, personal care/caregiving, animal care, payments on debt, etc.) That gave me an idea of what was coming in and what was going out (and if there was anything left over at the end of the month). It showed me where their highest expenses were and helped me figure out what could be cut back, as well as what would likely increase, like their housing (they moved to a senior community for a few years), medical expenses, healthcare, etc.    The numbers didn't add up. So I looked for ways to increase their income. They started receiving their long-term care insurance benefits and that helped. Later, I applied for Veterans Aid and Attendance benefits for

About 6 in 10 family caregivers are also working at a paid job. It can be very difficult to put in both paid work hours and family caregiving hours - for some it's like having two full-time jobs. Many family caregivers make adjustments to their work, such as: Going in late or leaving early Taking time off Cutting back to part-time Taking a lower-paying job but less stressful job Becoming self-employed or doing consulting for more flexibility Many caregivers have financial strains due to caregiving, but those who have stopped working are twice as likely to report financial strain.   If you are considering making changes to your work situation due to caregiving, keep the following things in mind in terms of potential impacts on your personal finances. Consider the impact on your contributions to Social Security and your future payments when you retire. Get clear about how your pension, 401K and other retirement savings will be impacted.  Think about how your long-term career

When I was caring for my parents, I provided around 60 to 80 hrs of unpaid care per week. I did evenings and weekends but had paid caregivers while I worked (and when I traveled out of town for work). Eventually, as Dad's Alzheimer's progressed, he needed two people to help when he was up and moving, so even when my sister or I were there, we needed another set of hands at times. The necessary cost of hiring paid caregivers was high, but it helped me keep Dad at home through the end of his life.   There are pros and cons to each of the various ways to hire paid caregivers (also known as home health aides or personal care aides). Here are some things to keep in mind: The cost will vary from state to state and even within a state, so do some research about the going rate in your loved ones' area.  If you hire through an agency, the agency takes a substantial portion of the hourly rate you pay. The caregiver isn't getting paid the entire amount. The pros of this approach i

On average, family caregivers spend approximately 26% of their own income on caregiving expenses. It can be overwhelming. Here's something that could help: you may be eligible for certain tax credits and deductions related to the money you spend on caregiving. These are some things to keep in mind to ensure you maximize any tax credits or deductions for which you may be eligible.    Keep good records. You'll need to track all of the money you spend on caregiving. Keep receipts and/or a log of care and medical expenses you pay for, as well as what you spend on their living arrangements. You may also need to prove that they have been living with you and for how long.  Get help from a tax expert. Tax law can be complicated so it's a good idea to get help from an expert who is familiar with caregiving tax credits and deductions. If the cost of a tax professional is prohibitive for you, AARP Foundation's Tax-Aide program offers free tax preparation services by very well-trai

When caregiving for family and friends, one of the greatest financial concerns can be addressing their vulnerability to fraud and scams.   When I became involved in helping my parents manage their finances, I realized Dad had been giving money for years to a man who claimed he was associated with an organization that helped disabled veterans. But there was no evidence of his fake organization, and when I asked him to stop calling my dad (and explained that dad had Alzheimer's and could not afford to donate), he wouldn't stop calling. His phone number wouldn't show in caller I.D. so I couldn't report him that way. Eventually, I changed my parents' phone number, and then the calls finally stopped. I wasn't sure how much money dad had given this man over the years, but I was so angry at how his kind, trusting, giving nature had been exploited by a scammer.    Like many older adults, Dad's world had gotten smaller, he was probably lonely sometimes and more vulnerable to some

I've worked in the field of aging for nearly 40 years, but not as a Medicare expert. So when I got more involved in caring for my parents, I found that, while I understood the basics of Medicare, there were some things I needed to learn more about. The same would be true for you as a caregiver.   I urge you to become familiar with what Medicare (and Medicaid) does (and doesn't) pay for in terms of in-home care ahead of time. Then you'll be more prepared for the costs of caregiving.    For example, many people believe that Medicare will pay for the costs of in-home paid caregivers and home health aides on an ongoing basis to help your loved ones as they age. But Medicare does not generally pay for that type of ongoing care. Medicare isn't designed to provide 24/7 care.   If your loved one qualifies for Medicaid, most states have a Medicaid "waiver" to use Medicaid funds for in-home services for people who qualify for a skilled nursing level of care but who wish to re

As AARP's family and caregiving expert, one of the most common questions I'm asked is, "How can I get paid to care for my (family member, friend etc.)?" It's a common question because it's a common problem. Many of us struggle to keep working while caring for loved ones, and if we quit our paid jobs then our finances are highly affected. We want to care for our loved ones, but we also need an income.    If you'd like to get paid to care for loved ones, there are a few options that may fit your situation. I'll be honest - unfortunately, not everyone who needs to get paid to provide care will fit into these categories. But for some of you, these options may be helpful.    If your loved ones are eligible for and enrolled in Medicaid, you may be able to get paid to provide care for them. Eligibility varies from state to state, so be sure to contact your state Medicaid office to find out if your loved one and you are eligible.  If your loved ones are veterans,

Hi.  I am new here.  I have a sister that i have been caring for since my mom passed on. She is close to 70 now and needs someone to guide her in the right directions and maybe help with finding a place to live.  I am older than she so what avenue can I pursue.  I live in North New Jersey. 

I need help finding a place for my mom. She is in HUD senior apartments. She is in the first stage of dementia and wants to be by 1 of her children. Do I sign her up for Hud here and then sign her up for home health.  Or do I sign her up for medicate and try to find an assisted living apartment? I am not sure what to do.Any advice would be great

Your family member may be able to claim federal tax deductions for many health care costs, including a hospital bed or wheelchair; out-of-pocket expenses not covered by health insurance; remodeling the home to make it accessible; and hiring a short-term or part-time home health aide to provide respite for the main caregiver. Save receipts for medical expenses.   Also, find out whether your loved one has a life insurance policy that makes accelerated death payments to help pay for long-term care.   Below you can find other legal checklist items for family caregivers:   A legal Checklist for Family Caregivers #1: Have the right documents A legal Checklist for Family Caregivers #2: Make a family plan A legal Checklist for Family Caregivers #3: Organize important papers A legal Checklist for Family Caregivers #4: Explore potential financial help A legal Checklist for Family Caregivers #6: Think beyond your loved one

Many people drive for a while after a dementia diagnosis - my Dad drove for probably 3-4 years after very early diagnosis and starting treatment even before we knew it, his doctor was on it. Here are a few things to keep in mind around keeping your loved ones from getting lost and/or hurt due to driving:   If your loved ones are still driving, be sure to constantly monitor their judgment, vision and visual processing, safety, and driving/navigating skills. They may be able to operate the car safely, but unable to find their way around. It's a good idea to have a GPS tracker in the car so you can always find them. Even if you think your loved one is still fine to drive and won't get lost doing errands close to home - or if you don’t think there’s a chance they could get in the car and drive at all - it’s a good idea to put a GPS tracker in the car. Review AARP's We Need to Talk online seminar about discussing hanging up the keys with loved ones. You can also confer with

If you're caring for loved ones living with dementia at home, preventing them from getting lost or hurt is a top priority.    You may have hidden the car keys or removed the car, but keep in mind your loved ones might decide it’s a good idea to find another mode of transportation. Believe it or not, caregivers have told me many stories about their loved ones hopping on a riding mower, tractor, bicycle, or 4-wheel drive vehicle and heading down the road. Be sure to monitor their ability to use these alternate vehicles safely and block access if they can’t be safe - or there is any chance they could leave your property and get lost or be involved in an accident. One can get quite a distance in one of these alternative vehicles! Remember that abilities and needs can vary greatly among individuals with dementia, and safety concerns can change as the disease progresses. Continually assess your loved ones’ risk for getting lost or injured if they leave the home. Do whatever you c

You're doing things to prevent your loved ones who are living with dementia from leaving the house but just in case they do leave, it's a good idea to think about what could happen once they are outside. If your loved ones leave the house, there is not only a danger that they could get lost, they could also get hurt. So check out your immediate surroundings and your neighbors' yards and address safety hazards at home. Here are some things to look for:   People who have dementia and visual/perceptual impairments may walk into glass doors, so place stickers on them. Install motion-sensor lights and cameras outside - all around the house. The lights coming on could alert you that your loved ones are outside, and you can set up notifications for the video cameras to alert you there is movement outside. The video camera can also help you quickly identify where they are. Bright motion sensor lights may also make them stop and reconsider leaving the safety of the yard.  Fence in an

I cared for my Dad, who had Alzheimers, most intensively from 2009 to 2018. When I got started GPS was not readily available to people, even towards the end it wasn't available like it is now. But GPS can be an incredible help and bring you peace of mind if you're concerned your loved one might go out and get lost. So I suggest you explore ways to use GPS tracking.   If your loved ones have a smartphone, ensure there is a GPS tracking system installed that you can access if you can’t find them, or if you need to track their progress when they travel alone. For example, use the Find My… app (iPhone, Apple watch, laptop, iPad, or an air tag that you’ve attached to keys or other items) feature on Apple devices, or Find My Device and Find My Friends on Android devices.   Other smartphone apps like Life360 Family Locator and Glympse for Auto help you track loved ones in real time. Another option is a device attached to the car dashboard, such as&nb

If you're caring for someone living with dementia, there is always a chance they could get lost and unable to find their way home. Be sure your loved ones have some form of identification on them, in case they encounter someone who can help but are unable to share their name, address, medical conditions, and other pertinent information. Multiple forms of identification, emergency contact numbers, and disclosure of their medical diagnosis of dementia are a good idea, in case one form is removed or lost.   You might get an ID bracelet or pendant, or one that laces into shoelaces or attaches to a watchband, as well as identification inside their clothing and in their wallet. For my dad, who had Alzheimers, my boyfriend suggested a very simple Road ID bracelet with a comfortable wristband like the one he wore when he went running. I purchased one for my dad, and he wore it for eight years, never trying to remove it.   Also be sure you have recent photos in case they are needed fo

If you're caregiving at home for a loved one living with Alzheimer's or another form of dementia, you may worry about them going outside the home and getting lost. Consider gadgets and technology that will alert you that your loved ones are up and about before they leave the home, such as audio and video monitors, floor mat or seat pad alarms, motion sensor alarms (in the home and near the door or driveway) or simple door chime alarms.   Make door handles more difficult to open by using door lever safety locks or doorknob safety covers. Try installing deadbolt locks where they are harder to see — like above eye level or below the “normal” placement.   You may need multiple items in place to attain peace of mind. Just be sure that you can exit in an emergency.   Hope this is helpful! Check out my other tips, here in the AARP online community, about keeping your loved ones safe!   Take care, Amy Goyer, AARP Family & Caregiving Expert Author, Juggling Lif

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This might be a little unusual. I'm searching for information pertaining to me.  My assistance programs have provided med dispensers previously, but I don't believe those would be effective  now.  I can generally manage buying, storing and taking the proper pills on time with timers/reminders as long as there are no alterations in my schedule.  My problem is if I'm interrupted mid task, I don't get them taken, and they must be spaced pretty precisely which then means I'm missing multiple doses.Does anyone know of a dispenser that requires a "proof" of taking step after dispensing? (similar to the nurses who WATCH and then CHECK that you've actually swallowed before leaving the room?)I would also appreciate any tips on how others have approached the problem.  I have a full day attendant 3 days a week a part day 2 days a week so interactions to train a habit might be the solution.Some folks might think of this as non-compliance but I truly recognize I NEED and I

Sundowners syndrome can mean increased anxiety, restlessness, fear and insecurity for our loved ones in the afternoon and evening. One of the best ways to introduce a sense of calm and comfort is my next tip:   Use Music and Calming Sounds   I have a degree in music therapy and started out my career as a music therapist working in adult day centers and nursing homes. I found music to be an incredibly effective tool, especially for those who are living with dementia.   Years later, as I cared for Dad, my music therapy skills kicked in and we used music throughout the day to help him— instrumental music as he woke up, sing-along favorites or show tunes to activate him, and calming music when sundowning set in. Music gave Dad a much better quality of life while living with Alzheimer's.    According to a recent report from the AARP-founded Global Council on Brain Health music stimulates many areas of the brain, including those responsible for memory, move

When Dad, who had Alzheimer’s, began to experience Sundowners symptoms like anxiety and a sense of urgency to get something done or go somewhere (or really any time he felt anxious) I found that most of the time I could comfort him with a hug or hold his hand. He then relaxed and calmed down, expressing gratitude that I cared. My experience leads me to my 9th tip for you:   Give Healing Touch   Never underestimate the value of a hand or foot massage to relax tense muscles and increase feel-good hormones. For example, when Dad was at the height of sundowning, at the suggestion of his acupuncturist, we prepared a warm footbath with herbs and essential oils. We soaked and massaged his feet every afternoon around 4pm – a bit before his Sundowner’s symptoms began to emerge. Then we massaged lotion into his feet and hands. This process calmed and comforted him, easing him through the transition incredibly well and preventing a lot of distress and anxiety.   As a little girl, I