Help for Family Caregivers of Seniors
Today’s senior caregivers are husbands, wives, sons, daughters, brothers, sisters. Forty-three million in the U.S. provide care to those 50 and older. Fifty percent are working full time, yet they work an additional 30 hours a week providing care such as feeding, dressing, grooming, shopping, and housekeeping. Some provide care for months, some for years.
They are unpaid but their care is crucial to their loved ones’ survival.
Whether you are the sole caregiver or sharing duties with another family member, the most important thing to remember is that you should not try to do it alone. Your well-being as a caregiver depends on the help of others.
We’ll provide some practical ways you can make caregiving for your loved one safer, more affordable and less stressful.
A Growing Need
Family-based senior care is growing quickly, especially for those who can’t afford institutional care such as nursing homes and assisted living. From 2007 to 2009, the value of caregiver services provided jumped from $375 billion a year to $450 billion. And by 2030, the population of those 65 and older will double.
Hold a Family Meeting
Hold a meeting with all family members concerned to decide who will be involved with caregiving. You may choose to include the ill family member as well depending on the individual situation.
In your meeting, discuss topics such as health, legal, finances, transportation, and other potential care options, such as respite care. These topics are covered in detail below. Then discuss the support roles each family member will play. You’ll likely be more effective if you ask each person how they want to contribute.
If you are the sole caregiver, you’ll want to set up a network of support—professionals, friends, neighbors, church members, volunteers—who can help along the way. There will be times when you are unable—and shouldn’t attempt—to do it all. You’ll need people in place who can cover for you.
For example, is there a neighbor you can rely on to handle transportation to a doctor’s appointment should you be unable?
Get together with family periodically to discuss the challenges of providing care. You may need to reassign caregiving duties or pick up the slack if a family member is no longer able to contribute.
As a caregiver, it’s crucial to have a complete picture of your loved one’s health. Keep a notebook or spreadsheet with the following information:
- Medications with dosages (and any side effects of these medications)–write on each bottle what condition it’s treating
- Names and phone numbers for doctors and other health experts
- A medical history with dates of medical tests, any surgeries and/or hospitalizations
- Dietary needs or restrictions
- A record of doctors’ visits including what was discussed and any follow up visits or recommendations
If you are dealing with some specific health issues such as Alzheimer’s, spine problems or depression, you can visit our Senior Library as a starting place. As always, we recommend consulting with your loved one’s doctor or other health professional when dealing with a health issue.
Did you know caregivers spend an average of $5,500 a year out-of-pocket providing care? As a caregiver, spending your own money is inevitable. But make sure you’re not spending more than you can afford. Get an inventory of your elder’s finances including:
- Current income (SS, SSI, pension)
- Monthly expenses (power, phone, etc.)
- Assets (401K, IRAs, cash, stocks, et al)
- Debts (mortgage, car, credit cards)
- Insurance (Medicare, private plan, Veterans benefits, long-term care)
Is there positive cash flow each month? Are all of the bills up-to-date? Can they still afford to live where they are? Having a clear picture of their finances will allow you to budget for care.
And if there are financial issues, get a hold of them right away.
There are hundreds of financial assistance programs across the country for seniors. For a list of senior resources covering everything from food assistance to affordable housing to healthcare, see our comprehensive “Resource Guide for Seniors on Social Security.”
If you are providing care for a loved one (mom, dad, brother, sister, step-dad, et al.), you may be able to claim them as a “qualifying relative” and reduce your taxable income by $3,700. See IRS Publication 503to see how to qualify and how to figure the credit.
Some medical expenses may also be claimed for your spouse or qualifying relative. Medical expenses include payments for services “rendered by physicians, surgeons, dentists, and other medical practitioners. They include the costs of equipment, supplies, and diagnostic devices needed for these purposes.”
Additionally, they include health insurance premiums, transportation to medical care, long-term care services, and long-term care insurance.
For a complete list of qualifying expenses and qualifying relatives, see IRS Publication 502.
Using Form 1040 Schedule A, you can deduct expenses that are more than 10% of your Adjusted Gross Income (AGI). Before 2013, the threshold was 7.5% of AGI; Obamacare changed this to 10%. (However, those 65 and older can still use the 7.5% threshold until 2016.)
Here’s an example: Your AGI is $100,000. So 10% of $100,000 is $10,000. The medical expenses you paid were $11,500. You could claim/deduct the difference: $11,500 – $10,000= $1,500.
Other possible tax deductions include professional home care such as hiring a nurse that assists with activities of daily living.
Issues such as power of attorney, living wills, trusts, end-of-life care and guardianship should be discussed immediately with both your loved one and a legal professional.
For example, with a durable power of attorney, you’ll be able to take care of medical and financial matters for the person should they become mentally incapacitated.
Go to the National Legal Resource Center for a list of non-profit legal services by state.
Other Care Options
If you’re providing family-based senior care, you know how tiring and stressful it can be. Don’t try to do it all, all the time. Get help. There are many ways you can ease the burden.
Respite care provides relief for the caregiver it's for a few hours a day or a few days a week.
Respite care includes a variety of services such as home-based care, skilled nursing, home health, residential programs and companionship.
If you’re a working caregiver, you might want to consider adult day care. These facilities provide socialization and care services to seniors while also providing a needed break for caregivers.
The costs vary by state and region; the U.S. average is $70 a day. Your nearest Area Agency on Aging or state Aging Department can tell you about assistance programs to help with the cost. You can read more about adult day care here.
Over half of those 65 and older don’t have access to public transportation. Yet the ability to get around is crucial for physical and mental well-being as well as for maintaining some semblance of independence.
Unfortunately, Caregivers are not always available to get their charges to all of their various appointments, medical, social and otherwise.
For help finding transportation resources in your area, call 800-677-1116 or click on Eldercare Locator.
To find public transportation options in your area, go to the American Public Transportation Association.
Assistive Technology Devices
Assistive technology devices can make the life of a senior—and your life, easier. ASTs include items such as power wheelchairs, walkers, raised toilet seats, large button phones, intercoms, voice activated electric devices, bathroom handrails, lever door knobs, home modifications (wider doors for wheel chairs, wall railings, wheelchair ramps, etc.).
These products assist while performing tasks and activities making an elder’s life safer and more independent. Home assessments can be provided by occupational therapists, certified aging-in-place specialists (CAPS), and by other health care professionals who make house calls.
See “Senior Fall Prevention” for ways you can minimize accidents and maximize safety.
Additionally, you can see “Senior Living Aids and Assistive Technology Devices” for a list of safety items to check.
Medicare Part B pays up to 80% of some ASTs, and some private insurance plans will pay for qualifying devices.
Caring for the Caregiver
Caregiving is stressful in many ways. The work is time-intensive and emotionally intensive, and it often involves significant physical labor such as lifting an adult or pushing a wheelchair for hours a day. Even so, caregivers aren’t known for complaining. Usually, a family caregiver is so emotionally invested in the senior’s condition that they may neglect their own wellbeing. Don’t let that be you! It isn’t necessary. Plus, the quality of the care you provide depends on, at the very least, taking care of your physical and mental wellbeing.
As a caregiver, you don’t need to experience unmanageable stress or “reinvent the wheel” as you learn to cope. Millions of people have worked through similar situations and found healthy ways to reduce personal stress — and even thrive! Here are some of their moves.
Get Respite Care
Respite care is temporary senior care that relieves an unpaid caregiver of his or her duties. An example is an elder companion or home health aide stopping by for two afternoons per week. In many communities, respite care services are available at a low cost or for free. You might find respite care through:
- The Alzheimer’s Association
- A local community center
- Religious organizations
- Medical colleges
- The Veterans Administration
- Your state’s Agency on Aging. Many home care agencies have grant money to help provide affordable Alzheimer’s caregiver respite as well.
Use an Organizer
Keeping information well organized can help minimize caregiver stress. In a single book or mobile device, you can store:
- A calendar of senior care appointments
- Senior care contacts (such as doctors, the pharmacy, a meal delivery service, and an adult day care facility)
- A list of the senior’s medications and dosages
- Questions that arise during caregiving (so they’ll be handy when you meet with your support group or other care providers).
Keep a Caregiving Journal
Caregiving for any person, and especially for an elderly family member, tends to elicit a jumble of thoughts and diverse emotions. In a single morning of caregiving, you might experience emotions ranging from joy and gratefulness to frustration and guilt.
Getting adequate sleep is critical for processing all the input, but consciously processing your experience is also essential to mental health. By merely expressing your caregiving day on paper, you can ease some stress. By organizing your thoughts into sentences, you’ll naturally start to untangle mixed-up thoughts that would otherwise clutter your mind. And as your words collect across the pages of your caregiving journal, you’ll begin to identify patterns that could make the next days easier. Taking specific kinds of notes can be especially valuable. For example, every day, you can note:
- The day’s main activities
- A success (and factors behind the success)
- A challenge and possible causes/solutions
- A goal for the next day
- A reason to feel grateful
Consistently expressing gratitude in your caregiving journal can help boost your mood. Over time it can train you to be more aware of positivity in your life even as you struggle with serious stressors of caregiving.
Taking walks or getting other cardiovascular exercise is essential for a caregiver’s physical health. It matters for all the usual health reasons, plus it provides an outlet for the not-so-usual stress that you might experience. Exercising at a brisk pace can reduce cortisol (a stress hormone) and release endorphins, naturally taking your mood to the next level. You may be able to combine your exercise with the senior’s regularly. For example, depending on the senior’s condition, you might be able to swim together or take long walks. Still, it’s advisable to have “alone time” for exercise. That way, you can work at a higher ability level. You’ll also get a chance to clear your mind.
Join a Caregiver Support Group
Support groups are designed to let caregivers express themselves freely. For many participants, a support group might be the only place they can speak without fear of judgment or being misunderstood. Participants share problems and strategies related to caregiving and balancing their lives. Often they develop close friendships. Groups might be led by senior care professionals such as social workers, or the group members could lead them. Some caregiver support groups are general. Others are disease-specific or meant for caregivers of sick children. To find a support group, you can check with local nonprofits, religious centers, and public or private community centers.
Schedule Time to Relax
Above, we mentioned the importance of respite care. Still, even with respite care, many informal care providers neglect to truly relax. New duties loom during “time off,” and the caregiver always gets the lowest priority — unless a conscious effort is made. Take time every month to plan in advance some activities that you find relaxing and rejuvenating. If you feel guilty taking time away from your loved one, remember that you have a right to care for yourself.