Category Archives: Caregivers

Support and Recognition for Caregivers’ Contributions

Caregiver’s “Bill of Rights” stresses self-care and dignity

The concept of a Caregiver Bill of Rights is not new. Its origins are sometimes disputed, but many agree that it arose more than 30 years ago after the publication of a book called CareGiving: Helping an Aging Loved One by Jo Horne (AARP Books, 2015). A landmark work that is still relevant to caregivers today, the book addresses all aspects of day-to-day caregiving, and emphasizes the vital relationship between the care provider and recipient.

Caregivers handling the stresses, challenges, and emotional toll of caring for an aging family member—especially caregivers who often feel undervalued, abandoned, overburdened, and overwhelmed—should familiarize themselves with these basic tenets that champion all caregivers’ rights to practice self-care, preserve their own individuality, seek help from others, take pride in their contributions, and to expect acknowledgement and respect for what they do.

Caregiver’s Bill of Rights by Jo Horne 

I have the right:

  • To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.
  • To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.
  • To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
  • To get angry, be depressed, and express other difficult feelings occasionally.
  • To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
  • To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
  • To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
  • To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
  • To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.

R-E-S-P-I-T-E! Spells Relief!

Caregivers Can Plan Ahead for the Holiday Season and Make Time for Themselves

ISL Communities can help!

With a record number of senior adults staying in their homes longer, frequently older American’s are relying on family and friends for their care. In fact, millions of families provide unpaid care for seniors 60 or older, spending on average 20+ hours a week helping with ongoing home care. For these devoted caregivers, the holiday season can add additional stress; torn between the desire to travel or take extra time to spend with others, and the need to provide quality care for loved ones. But there is a solution that is often overlooked, it is called respite or short-term care. Respite care offers caregivers and families the opportunity to temporarily give some time back to themselves while their family member receives the care and services they need in a temporary, welcoming environment. Many Integral Senior Living communities offer respite care.

Respite care is a temporary, short-term stay. Think of it as a mini-vacation (3 – 30 days) for both the caregiver and senior who must have care. Respite services give caregivers that rare chance to step away from their day-to-day responsibilities. Often it is seniors who are providing care for their spouses. This is where a little respite care can make a huge difference. Taking that much-needed break to care for there own needs helps caregivers avoid burnout, stress and fatigue.

“We often see family members come to our communities exhausted and frustrated, reaching their breaking point. They need help and a break, sometimes to step back for a breath of fresh air,” said Collette Valentines CEO/COO of ISL . “Feelings of depression, frustration and isolation often become so overwhelming for the caregiver. Often they neglect their own health concerns and that is where respite care can help.”  

Respite stays can range from a few days to a few weeks.  And placing a loved one in a stay is easier than most families realize, in fact it can take less than 24 hours. All that is often required is a physician’s report, an assessment by the community and for the guest to bring his or her own pharmaceuticals with them.  The fee is based on needs, many starting at about  $150 a day. Compare that to a hotel stay and checking out a senior living community is a much better option, meals, 24-jour supervision, care needs (Assistance with daily living) is all included in respite.

There is evidence that the family caregiver who takes a break from the associated stresses is better able to provide quality care. The demands of providing care are much more than a physical demand.  It is often just as emotional taking care of a loved one.  To provide good care, the caregiver needs to allow time for themselves – it’s a tough round-the-clock, hands-on job.

Check out your local ISL community for more information about respite care services.

Do You Judge Yourself As a “Caregiver”

Coping strategies to help banish caregiver’s remorse and guilt 

Being a caregiver to a senior family member is a valuable service and a great responsibility, performed out of love and devotion, and the task does have its rewards. Still, it is a hugely demanding job, often requiring round-the-clock responsibilities.

The enormous challenges of caregiving can bring forth many conflicting and unpleasant feelings, causing caregivers to believe they may not be up to the task. It’s common to fall into a pattern of self-judging, constantly criticizing yourself for the many ways you feel you’re not doing the job well enough.

How can you help chase away the constant self-judgment you hear in your head and reclaim your sense of competence in performing this praise-worthy function?

Acknowledge your negative feelings. All caregivers experience a range of emotions and reactions as they try to cope with their day-to-day duties. Common feelings include:

  • Anger
  • Frustration
  • Grief
  • Loneliness
  • Boredom
  • Resentfulness
  • Annoyance
  • Irritability
  • Jealousy of others’ freedom
  • Resentment of lack of appreciation for all you’re doing

And then add guilt for having these feelings! Guilt also arises when you feel you’re falling short of your ideal of the “perfect” caregiver.

The first step in managing these feelings is realizing that they’re normal and justified—and all caregivers experience similar feelings on a regular basis.

Notice damaging self-talk. Try to notice when you’re talking to yourself negatively. Keep a notebook and jot down whenever you have a self-judging thought: “Snapped at Dad this morning. I’m a bad daughter.” Or “Forgot to pick up Mom’s favorite juice. Why can’t I remember the simplest things?”

These thoughts may constantly run through our heads and we don’t notice how severely we speak to ourselves. Paying attention and writing them down will help you realize how often you’re doing it, and what you’re telling yourself. Ask yourself if you would judge someone else as harshly as you judge yourself.

Redirect negative thoughts, and look at the big picture. After you’ve been noticing your self-criticism, you’ll learn to recognize when it’s happening. Redirect your thoughts by focusing on something you’ve done well (no matter how small), or listing something you’re grateful for.

Instead of criticizing yourself for your trivial failures, look at the bigger picture. So what if the house isn’t spotless? So what if you served lunch later than usual?

Keep in mind what’s really important to you. Chances are you’ve delayed your household duties because you’ve chosen to spend quality time with your loved one to keep him engaged in life and boost his mood.

Keep in touch with other caregivers. Talking to other caregivers can give you fresh perspective. Caregiver support groups are ideal for sharing stories with others in similar situations. Many of their experiences, questions, and challenges will mirror your own. You may realize that you’re doing your best under difficult circumstances, there is no one right way to do the job, and you’re not alone in your situation.

To find a caregiver support group, check with local hospitals and community centers and senior living communities such as an ISL managed one. An online resource is the Eldercare Locator (http://www.eldercare.gov/Eldercare.NET/Public/Index.aspx) where you can enter your zip code to find the Area Agencies on Aging in your area. Call or go to the websites of the Area Agencies on Aging (sponsored by the federal Department of Health and Human Services) that are near you.

Should You Join a Caregiver Support Group?

How support groups can help caregivers, and what happens during group meetings 

Are you a caregiver or do you know a caregiver who’s feeling stressed, overwhelmed, burned out, or depressed? Attending local caregiver support group meetings can be an effective way to reduce stress and boost spirits because participants can interact with others in similar situations, get useful advice, and find out about helpful local resources.

Studies have shown that support groups have a significant positive effect on caregivers’ well-being, depression, and feelings of being overwhelmingly burdened.

But it might seem intimidating to walk into a room full of strangers and feel obligated to share personal details about your caregiving situation and your less-than-positive feelings about your day-to-day challenges.

Here’s a summary of reasons that joining a caregiver support group can be well worth your time, and how typical meetings work. 

The benefits of caregiver support groups

  • Get valuable caregiving tips and resources from social workers, health-care professionals, and experienced caregivers
  • Share and receive advice on managing challenging behaviors
  • Get and give support and advice on making difficult decisions or dealing with family conflicts
  • Learn how other caregivers cope with their situations and make time for themselves
  • Laugh and cry with other caregivers who truly understand your situation 

How caregiver support group meetings work 

  • A facilitator, often a social worker, leads the meetings
  • Each group has a regular schedule, usually weekly or monthly on the same day, and at the same time and location
  • Meetings usually last about two hours, but don’t let that stop you from attending. Tell the facilitator if you need to arrive late or leave early.
  • If you miss a meeting, no problem. You are not required to go regularly. Attend when you can or when you need extra support.
  • It’s completely optional to share. If you’d rather not speak, that’s OK—just let the facilitator know. Once you become more comfortable with the group, you’ll likely feel more inclined to share your experiences and knowledge.
  • During meetings, the facilitator usually asks participants to briefly introduce themselves and summarize their caregiving situation. Participants are then encouraged to ask questions, solicit advice about specific situations, or suggest topics for discussion.

How to find a caregiver support group near you

Check out the ISL community in your area. Many of our communities host caregiver support group meetings monthly and would love to see you join.

HBO Documentary Tells Real-Life Stories About Five Alzheimer’s In-Home Caregivers

Caregivers, an inspiring HBO documentary about the lives of five family caregivers who are caring for spouses or parents with Alzheimer’s disease, is available to watch for free at HBO’s The Alzheimer’s Project website (http://www.hbo.com/alzheimers/caregivers.html).

The film shows five men and women caregivers openly discussing the challenges of dealing with changes in their loved ones, their own health concerns, and their feelings of loss and frustration. They also share the ways they cope, and how they find joy by staying in the present and savoring small, everyday moments.

Two seniors with Alzheimer’s are also featured, talking about changes in their brain functions, and how they adapt and stay positive.

The 48-minute film is one of four documentaries produced for The Alzheimer’s Project, a collaboration of HBO Documentary Films and the National Institute on Aging at the National Institutes of Health, along with the Alzheimer’s Association and two national charitable gift funds.

One of the most devastating forms of memory loss is Alzheimer’s disease, says The Alzheimer’s Project at its website. Alzheimer’s is estimated to affect as many as 5 million Americans—a number that could rise to more than 11 million as the baby boom generation moves through retirement.

While there is no cure for the disease, The Alzheimer’s Project shows there is now reason for optimism about the future. The documentary series looks at groundbreaking discoveries made by leading scientists, as well as the effects of this debilitating condition on those with Alzheimer’s and their families.

Nurses Are Key to Healthy Senior Living

Every year, National Nurses Week focuses attention on the diverse ways the over 3 million nurses in America work to save lives and to improve the health of millions of individuals. This year, the American Nurses Association (ANA) has selected “Culture of Safety ” as the theme for 2016. Annually, National Nurses Week begins May 6 and ends on May 12, the birthday of Florence Nightingale. During this week, nurses are honored by communities such as ours for their hard work, diligence, and kindness.

“Nurses bring so much to senior living. Their attention to detail, care, and compassion often make the difference in our residents lives,” said Linda Mather, RN, CALN, vice president of resident care for ISL.  “It never ceases to amaze me what they do- day in and day out in all our communities, they are the conduit between resident, family, and physicians.”

The work nurses do in a senior living community varies widely. What is most valuable is the ability of a skilled and trained nurse to observe changes in a resident’s condition. In caring for seniors, it is critical to be alert, as conditions can change very quickly.  Nurses are well equipped to communicate information to the doctor or family when further evaluation is needed. They care for more than the resident; they are caring for the families.

A key goal in senior living communities is to promote aging in place; maximizing on the purpose and quality of life for residents. Properly managed, care by nurses plays a significant part in the health and wellness of residents. Using nurses along with other professional and licensed care staff helps residents enjoy a life of independence and dignity. Together nurses and family work in collaboration with others to assist residents in a better quality of life.

Seniors and Caregivers May Qualify for Tax Deductions for Assisted Living Costs, Medical Expenses, and Elder Care

More than 700,000 seniors live in thousands of assisted living facilities throughout the U.S., says a recent study from the Centers for Disease Control ad Prevention (CDC). And nearly 87 percent of residents pay for these facilities out of their own and their families’ financial resources. The good news is that seniors and caregivers may be eligible for tax deductions for assisted living costs that are related to medical or dental expenses.

If a loved one is receiving substantial medical care in assisted living and/or is in a special needs unit in a community, he or she may qualify for a tax deduction. This includes residents with Alzheimer’s or other forms of dementia who require substantial supervision to protect their health and safety.

For seniors residing in independent living communities, however, the only eligible deductible expenses would likely be those directly related to medical costs. 

Qualifying for Assisted Living Deductions

Detailed record keeping throughout the year, even for related expenses like mileage to and from doctor visits, can add up to substantial writeoffs at tax time.  First, the taxpayer must determine if he or she is entitled to itemize deductions. If the taxpayer is the senior, he or she can deduct qualified medical expenses. If the taxpayer is the caregiver, that caregiver must first find out if the senior qualifies as a dependent, depending on these IRS requirements:

  • The person the caregiver is claiming as a dependent must be married to or related to the caregiver.
  • The senior must be a citizen or resident of the United States or a resident of Canada or Mexico.
  • The senior must not file a joint return.
  • The senior must not have an annual gross income in excess of $3,950 (in 2015). Gross income does not include Social Security payments or other tax-exempt income. For those with incomes above $25,000, some portion of Social Security income may be includable in gross income.
  • The caregiver must provide more than half of the support for the senior during the year.

Consult a tax professional to learn more. Also this website offers more information on dependency at: http://www.irs.gov/publications/p554/ch05.html.

Which Senior Living Expenses Can Be Deductible?

For assisted living expenses to be tax deductible, the resident must be considered “chronically ill.” A doctor or nurse needs to have certified that the resident either:

  • Cannot perform at least two activities of daily living, such as eating, toileting, transferring, bath, dressing, or continence; or
  • Requires supervision due to a cognitive impairment (such as Alzheimer’s disease or another form of dementia).

Who Can Qualify for the Deduction?

To qualify for the deduction, the senior’s personal care services need to be provided according to a plan of care prescribed by a licensed health care provider. This means a doctor, nurse or social worker must prepare a plan that outlines the specific daily services the resident receives.

Typically, only the medical components of assisted living costs are deductible and ordinary living costs like room and board are not. However, if the resident is chronically ill and the facility is acting primarily for medical care and the care is being performed according to a certified care plan, then the room and board may be considered part of the medical care and the cost may be deductible. Residents who are not chronically ill may still deduct the portion of their expenses that are attributable to medical care, including entrance or initiation fees.

Which Medical Expenses Can Be Deducted?

  • Premiums paid for insurance policies that cover medical care are deductible, unless the premiums are paid with pretax dollars. Generally, the payroll tax paid for Medicare Part A is not deductible, but Medicare Part B premiums are deductible.
  • Payments made for nursing services. An actual nurse does not need to perform the services as long as the services are those generally performed by a nurse.
  • Medical fees from doctors, laboratories, assisted living residences, home health care and hospitals
  • The cost of long-term care, including housing, food, and other personal costs, if the person is chronically ill.
  • The cost of meals and lodging at a hospital or similar institution if a principal reason for being there is to receive medical care. The amount included in medical expenses for lodging cannot be more than $50 for each night for each person.
  • Home modifications costs such as wheelchair ramps, grab bars and handrails.
  • The cost of dental treatment.
  • The cost of travel to and from medical appointments.
  • Personal care items, such as disposable briefs and foods for a special diet.
  • Cost of prescription drugs.
  • Entrance fees for assisted living.
  • Room and board for assisted living if the resident is certified chronically ill by a healthcare professional and following a prescribed plan of care. Typically this means that they are unable to perform two activities od daily living (ADLs) or require supervision due to Alzheimer’s disease or other conditions.

To claim the deduction, the medical expenses have to be more than 10 percent of the resident’s adjusted gross income. (For taxpayers 65 and older, this threshold will be 7.5 percent through 2016.) In addition, only medical expenses paid during the year can be deducted, regardless of when the services were provided, and medical expenses are not deductible if they are reimbursable by insurance.

For more information on what can and cannot be deducted for medical expenses see Publication 502 on the IRS Web site at http://www.irs.gov/pub/irs-pdf/p502.pdf and/or seek the advice of a tax professional.

How to Help Seniors Prevent Falling

Older adults have an alarmingly high chance of falling inside and outside the home. According to the Centers for Disease Control and Prevention (CDC), 1 out of 3 people age 65 and older falls each year. After age 80, that increases to a 1 in 2 chance. That means your senior adult has a 33 percent to 50 percent chance of falling this year.

Physical Changes that Increase the Risk of Falls 

  • Age-related muscle loss lessens strength and weakens bones.
  • Aging bodies and medications make balance more difficult.
  • Worsening vision impairs seniors’ ability to stay upright and clearly see what’s nearby.
  • Diminished flexibility, especially in hips, knees, and ankles, can cause to falls.
  • Lower endurance (how long you can stand and walk with tiring) raises fall risk.
  • Lower strength, balance, and flexibility make seniors feel less confidence in their walking ability.

Falls can be devastating to seniors’ health in the short term and long term. In older adults, falls can cause hip fractures and head injuries. They’re the leading cause of death from injury, because of traumatic brain injury.

Even if a fall is not life threatening, seniors can face long-term consequences because their bodies are less able to recover fully. Overall health can worsen and care needs increase, sometimes leading to extended stays in nursing homes or assisted-living facilities.

The good news is that falls do not have to become an inevitable rite of passage with aging. The chances of falling can be substantially lessened with small modifications around the home.

Steps Toward Preventing Falls

  • Area rugs are a major trip hazard. Tape them down or consider getting rid of them.
  • Declutter the house, especially the main walk-through areas. Clutter tends to pile up quickly, but try to keep shoes, newspapers, books, and clothing out of the path of seniors.
  • Hallways and stairways should be well lit. Seniors tend to make more frequent trips to the bathroom, especially at night. Light up hallways leading to the bathroom. Make sure the steps on the stairwell are well-lit for easier navigation in the dark.
  • The kitchen and the bathroom often have wet floors. Add nonslip mats in the kitchen and bathroom, near the sinks and bathtub or shower to greatly reduce falls on slippery surfaces. Apply stick-on nonslip strips to tub and shower floors.
  • Consider adding safety supports. Add an additional railing on the stairs or install grab bars in the bathroom.
  • In the bedroom and kitchen, move frequently used items down from high shelves. Put them within easy arm’s reach.

Caregivers: Tips for Less Stress Over the Holidays — and More Joy!

The holidays can be a stressful time of year in any household, especially if you’re a caregiver for an aging loved one. Changes in routine, raised expectations, busier schedules, and more frequent social interactions can quickly become overwhelming for loved ones and caregivers alike.

These tips can help caregivers manage stress and anxiety for themselves and those they care for while focusing on less-demanding fun and merriment.

Simplify! Resist the pressure go all-out for the holidays. You’re not obligated to attend every event, host gatherings in your home, or keep up with all family holiday traditions. Choose just a few activities, decorations, or foods that are meaningful to you and feel doable.

Start new traditions. While it’s true that honoring family traditions may help a loved one with dementia connect with holiday celebrations, it’s OK to scale down favorite festivities, or carry out just a few traditions. Another idea is to try something new. If your loved one seems receptive, attend a holiday concert you’ve never gone to before. Instead of cooking a holiday meal, eat out or order a prepared meal. Take a drive to look at neighborhood holiday decorations. 

Keep up self-care. During this busy time, it’s easy to let your own needs and well-being slip. But making time for exercise can boost your mood and renew valuable stamina. Keep exercise as simple as walking in a shopping mall or dancing to holiday tunes. Try to limit sugary foods and alcohol that can result in an energy crash. Step outside for some mood-elevating vitamin D from sunlight.

Focus on what you can do rather on what you can’t. Valuable advice from AARP: “Think about what you can accomplish instead of what you can’t.” Further, celebrate what your loved ones can do, rather than mourning their diminished capabilities. Revel in the holiday joys you and your loved one will experience this season, instead of missing those you’ll bypass. Try to give thanks for the help you are receiving rather than resenting those who aren’t supportive. AARP reminds us that negative thinking activates your body’s stress response. Redirect your thoughts when you feel yourself slipping into a detrimental mindset.

It’s National Family Caregivers Month

This year’s theme is “Respite: Care for Caregivers”

The Caregiver Action Network, the nation’s leading family caregiver organization that advocates for the more than 90 million Americans who care for disabled, sick, or elderly loved ones, cites these facts about family caregiving in the U.S.:

  • About 39 percent of adult Americans are caring for a loved one who is sick, disabled, or living with frailties of old age. That’s up from 30 percent in 2010.
  • Men are now almost as likely to say they are family caregivers as women are (37 percent of men; 40 percent of women). Surprisingly, 36 percent of younger Americans between ages 18 and 29 say they are family caregivers.
  • Family caregivers are the only people who are present with patients in all care settings.Patients may have more than one doctor; nurses change shifts; prescriptions are filled at different pharmacies. But family caregivers are there as full partners with their loved ones through it all.
  • Most families have to tighten their belts at home to pay for out-of-pocket caregiving costs (an average of $5,500 per year). And many more have to make home alterations to ensure safety, security, and cleanliness for their loved ones.

Ways to Help a Caregiver

The theme of this year’s National Family Caregivers Month is “Respite: Care for Caregivers.” Given that caregiving is a demanding, round-the-clock job, what can we do to help and support to caregivers in our families and communities? The Mayo Clinic (http://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/alzheimers/art-20048212?pg=1) offers tips on how to help caregivers of adults with Alzheimer’s, but their advice applies to caregivers of loved ones with all types of disabilities, diseases, and limitations. 

Be Specific

First, Mayo Clinic staff advise people offering help to be specific. General offers to help can be hard for caregivers to accept, so make concrete offers. Here are examples:

  • “What can I pick up for you at the grocery store?”
  • “I’m free tomorrow afternoon. Can I sit in for you while you take a few hours off?”
  • “I doubled my meatloaf recipe, so I bought enough to last you for several meals.”
  • “Can I help you gather laundry? I’ll take it home and bring it back clean and folded tomorrow.”
  • “Can I come over this weekend and mow your lawn?”

Check in

Sending a card, calling, or texting and emailing can be meaningful ways to show support, but personal visits are even better. Contact with friends and family can lift a caregiver’s spirits—and visits give you the chance to make specific offers to help, or to deliver food and other necessities.

Watch for Caregiver Stress

Often caregivers have difficulty accepting help—they mistakenly believe they should be able to do everything themselves. Overwhelmed caregivers are vulnerable to suffering from irritability, anger, exhaustion, social withdrawal, anxiety, and depression, among other problems. Caregiver stress can be harmful not only to the caregiver, but also to the person receiving care. Be gently persistent in specific offers to help. Let the caregiver know that he or she isn’t in this alone.