Family Caregiver Alliance - Kathy Kelly, Executive Director
Home Alone: Family Caregivers Providing Complex Chronic Care is the title of a new study released today that profiles the results of a population-based survey on the type of nursing/medical tasks performed in the home by family caregivers. The study–one of the first of its kind–surveys families to ask what type of tasks are regularly performed in the home, what type of training they received, the level of support provided by healthcare professionals and how these tasks impacted their lives. The report provides recommendations for future actions.
A few key highlights include:
- Almost half of family caregivers performed medical/nursing tasks for care recipients with multiple chronic physical and cognitive conditions
- Three out of four family caregivers that are providing medical tasks are managing medications, including administering intravenous fluids and injections
- More than half of family caregivers who provided medical tasks said that they did not feel that they had a choice because there was no one else to do it or insurance wouldn’t cover a professional’s help
- Most family caregivers who provided help with five or more medical/nursing tasks believed they were helping their family member avoid institutionalization.
The report is a joint effort between AARP and the United Hospital Fund funded by the John A Hartford Foundation. The press release and link to the report can be found on the United Hospital Fund site: http://www.uhfnyc.org/news/880854
. . . the Impact on Caregiver Health & Strategies for Staying Well
Family Caregiver Alliance
Just eighteen months ago, Kelly felt like she was a different person. At the time, her career and her husband were her top priority. Kelly was able to spend long days at her job and relaxing weekends away in the mountains with her husband. Since then, Kelly’s mom was diagnosed with dementia. Being the only child, Kelly has become the primary caregiver for her mother who is becoming increasingly agitated and confused. Kelly now spends her weekends looking after her mom. She has cut her work days short to manage her mom’s medical appointments and other care needs. While Kelly loves her mother and wants only the best care for her, she is finding herself feeling increasingly lost as her new life includes less balance and more focus on her mother than herself.
Kelly is not alone in her struggles as a family caregiver. Statistics reveal that between 40 and 70% of family caregivers experience clinical symptoms of depression, which can often be caused by feelings of isolation and loneliness associated with the caregiving experience. It can be a dark and difficult period for those caregivers who experience these feelings of isolation.
Causes of Caregiver Isolation and Loneliness
For caregivers like Kelly, feelings of isolation and loneliness can be caused by a withdrawal from previous habits and lifestyle. While friends continue on their daily routines, some caregivers are left to feel alone in their caregiving duties. Likewise, caregivers without support from other caregivers in similar situations may feel as though no one really understands their situation. This can lead to a withdrawal from social activities and relationships that they previously enjoyed.
However, some caregivers may also find that they are literally facing isolation. For instance, a spouse caring for their partner may be providing care on a 24 hour basis, and feel unable to leave their care recipient. Thus, their time for personal rejuvenation is reduced to nothing, as they focus on only their care recipient – spending time away from home only for doctor visits or weekly runs to the grocery store. The lack of social interaction and stimulation from individuals other than their care recipient, especially when cognitive impairment is present, can be an undeniable trigger for loneliness.
Impacts of Caregiver Isolation
While feeling alone in your struggles as a caregiver will have obvious emotional impacts, there can also be unexpected physical side effects caused by the onset of depression. Caregivers report weight gain due to emotional eating, increased blood pressure caused by stress―both of which can contribute to complications such as diabetes, stroke or even premature death.
Although not all caregivers will experience such serious physical and emotional effects caused by isolation or loneliness, even the slightest feeling of being alone in your journey as a caregiver can have a significant impact on your overall well-being; making you less able to focus on work, family and responsibilities outside of your care recipient.
Strategies for Staying Well
One of the best ways to combat isolation and loneliness is to build some time into your caregiving routine to focus on yourself. While this may sound like a fantasy to caregivers who are already strapped for time, there are some ways to help re-connect to the people and activities that help restore your sense of connection and contentment . . .
- Respite Care: Periods of respite care can allow a caregiver to focus on their own personal needs without worrying about the safety of their care recipient. Respite services are typically available from home care agencies, or via local programs, such as your local Area Agency on Aging. However, you may also find that friends and family are able to assist you in caregiving duties from time to time, allowing you the time to focus on your own well-being.
- Finding Support: While your friends, or even your spouse, may not seem to understand what you’re going through, there are people in similar situations feeling the same way. Local support groups or online support forums may help you find common ground with caregivers in similar situations and offer a feeling of community in the midst of your isolation.
- Maintaining Your Sense of Self: Use the time that you do have for yourself to participate in activities that make you feel renewed. Whether you enjoy yoga, walks on a local trail, or even a movie and dinner at home with your family, involvement in your own interests may help you feel connected to your sense of self and help keep you in touch with your friends and loved ones. Even if they don’t completely understand what you’re going through, you may find that these individuals offer support in a different way.
Feeling alone is an issue that most caregivers will face to some degree during their journey as a caregiver. However, caregivers need not feel ashamed in their journey to find more support.
Content contributed by ClearCare Online.
Family Caregiver Alliance
Abby and Earl have been married for nearly 40 years, raising children together and enduring the struggles and triumphs of a long life together. Now, at 65 years of age, Earl has been diagnosed with Parkinson’s disease. While Abby has always made sure Earl had home-cooked meals, clean clothes and plenty of love, her role as a wife is beginning to shift into that of a caregiver. Earl’s symptoms now require assistance walking, getting dressed and even eating when his tremors are at their worst.
Abby loves her husband as much as she did the day she married him but finding balance to her new role as a wife and caregiver has caused anxiety and confusion for both of them. The strong, capable body of her husband has become weak and painful, leaving Abby to care for her husband in a capacity that she has never known in their decades of marriage.
Acting as a caregiver for a loved one of any relation can be emotionally draining, however handling the range of emotions brought forth by the need to care for a spouse can be especially draining. While many seniors who are suffering from debilitating effects of aging or disease also suffer from depression, researchers have found that spousal caregivers may be likely to experience depression at an even higher rate than those for whom they care.
Such depression can be spurred by a wide variety of emotional struggles. Care recipients may no longer have the cognitive ability to relate to their spouse, or be physically incapable of engaging in traditional intimacy, leaving spousal caregivers feeling as though they have lost the husband or wife they once knew so well. Many times, caregivers may feel as though they’re adjusting to taking care of an entirely different person, especially with diagnoses like dementia, which can leave caregivers mourning the loss of their previous life with their husbands or wives. While caregivers may feel guilty for these emotions, they are completely normal. Although you may fear talking with others about the changes in your marriage, support groups of caregivers in similar situations may offer a chance to talk about your challenges with people in similar situations.
Emotional strain can have an undeniable impact on physical well-being. Excess stress can lead to poor sleep, increased blood pressure, weight gain or loss, headaches or any other wealth of symptoms. Aside from physical conditions that negatively affect health, physical challenges may present themselves in other ways.
For example, wives may have trouble physically helping their husband move around the home due to a sheer difference in weight and size, while husbands may find that their own physical conditions make it difficult to help their wife with mobility. To help work around these physical challenges, it may be helpful to seek assistance from a home care agency, physically able friends and family, or assistive devices like motorized wheelchairs or walkers that can help reduce some of the physical strain.
When a husband or wife begins to require care due to the effects of aging or a physical or mental impairment, the dynamics of a marriage will likely change significantly. Favorite pastimes such as travel or meeting friends for dinner may become more difficult and require caregivers to choose between abandoning some of their old habits or modifying them to allow the care recipient spouse to comfortably participate.
Aside from a change in socialization habits, some caregivers and their spouses may feel embarrassed to explain their situation to friends. People may find themselves feeling ashamed of how their marriage is changing. This can be a difficult adjustment. Depending on age and circumstance, caregivers may also find that some of their friends are not as understanding as they expected of their new caregiver/spouse role and have a hard time accepting a reduced ability to participate in old activities. Conversely, some groups of friends may be in a similar situation and may be willing to work together to find ways to maintain social connections that help bolster everyone’s mood and maintain a new sense of normalcy.
Caregiving for a spouse can be one of life’s great challenges as you and your spouse figure out how to adjust to changes in body and mind that can be frustrating for you both. However, with a good system of support in place and allowing yourself to experience the wide range of emotions that will inevitably surface, the process can also be rewarding as you endure and conquer a new chapter with the one you love. Support resources can be found in various forms, including family (adult children and siblings) and friends; some of whom may be in similar situations and able to better relate to your feelings.
However, family and friends are not always available, or you may be more comfortable seeking support from less personal influences. In this case, support groups of other spousal caregivers can be a place to find comfort and understanding, as well as inspiration and tips from others’ experiences. And when you need a break, spousal caregivers should consider seeking respite care from home care services, or adult day programs. Respite care can provide caregivers and their spouses with time away from one another, which is just as important now as it was at any other time during the marriage.
Are you a caregiver for your spouse? If so, please share your experiences, or tips for finding balance in the comment space below.
Content contributed by ClearCare, Inc.
Family Caregiver Alliance
Amy Berman, an advocate extraordinaire for patients, families and improving healthcare for older adults, recently posted a blog on the John A. Hartford Foundation website entitled, The Essential (Before I Kick the) Bucket List. But this bucket list differs from what most think of when listing things you might want to see or do with your remaining lifetime: seeing faraway places, scaling mountains or experiencing new adventures. Amy, herself opting for palliative care for terminal breast cancer, designed a list of how she would like to see care for herself, for families and for those she has advocated for so long, older adults.
The essential five on her list:
- Care centers on the patient
- Care addresses the needs of the family
- Care is better coordinated
- Care focuses on quality of life and patient goals
- End of life care is more compassionate and driven by preferences
While the public discourse about healthcare is cluttered with talk of dazzling technologies, business case analogies and ever-more efficient health care practice, the blog piece reminds us that health care is all about the person, family and their quality of life. And when we think of care for our parents, spouses or even ourselves, this is what we experience as quality of care. It is time that we all step up efforts to achieve the essential five.
- Kathy Kelly,
Executive Director, FCA
Family Caregiver Alliance
With the holidays just a few months away, Patty is beginning to contemplate her family’s plans. Her sister in Oklahoma City has extended an invitation to join in her annual celebration, however, Patty is hesitant to accept the invite. As the primary caregiver for their father, who was diagnosed with Alzheimer’s disease last year, she worries that the change in routine and 6-hour road trip may be too much for Dad to handle. Although spending the day with other family is enticing, Patty is unsure of whether the trip would be enjoyable for her father, or if she is setting herself up for an exceptionally stressful holiday away from home.
Caregivers of individuals with Alzheimer’s disease are often hesitant to partake in travel with their care recipient; and understandably so. With wandering, agitation and confusion as common dementia related symptoms , it’s easy to see how what seems like a relaxing weekend in the mountain to family and friends can be a source of severe anxiety for those traveling with a loved one living with dementia.
However, an Alzheimer’s disease diagnosis doesn’t necessarily mean that travel is impossible. While each individual and caregiver are unique, and travel may not be feasible in the later stages of the disease, many caregivers may find that traveling can be an enjoyable break from the norm with proper preparations.
Tips for Travel
Being prepared for the unique challenges of traveling with a care recipient with Alzheimer’s disease can make the experience less intimidating for both caregivers and their loved ones. Here are a few dementia-friendly travel tips:
Honestly evaluate the ability of your care recipient to travel:
Before planning a trip with an individual that has been diagnosed with Alzheimer’s disease, you’ll probably want to weigh the facts and decide whether or not travel seems reasonable. Are you willing to assume full responsibility for all necessary planning and thinking ahead for two of you? Ask yourself if disorientation, wandering and agitation are prominent symptoms of your care recipient’s condition. If these symptoms cause issues in your daily routines, they may become even more severe in unfamiliar surroundings, and make travel more stressful, or even dangerous.
Arm your care recipient with adequate identification:
If travel still seems like a reasonable option for you and your care recipient, be sure to equip them with adequate identification before travel. ID bracelet, or other identification methods, such as wearable GPS unit that can’t be easily removed or lost may help ease your mind in case of an unexpected separation from your care recipient. Consider listing the individual’s name, and your cell phone number on this identification to ensure that anyone trying to assist your loved one is able to easily get ahold of you.
Keep a photo and a calling card with you:
Carry a current photo of your care recipient with you, just in case you become separated in an airport, at a gas station or anywhere else you may need the help of others to reunite. Carry a laminated card that briefly details that your loved one has dementia. Hand it to fellow travellers or airline staff to offer a frank, discrete disclosure while saving embarrassment and frustration.
Ask for special accommodations:
Many travel companies, such as airlines or bus operators, will make efforts to provide special accommodations for caregivers traveling with a memory impaired loved one. . When booking any travel tickets, let the agent know that you’re traveling with an impaired individual. They may be able to help you book the bulkhead seats with more leg room or closer to the restroom, or allow you to board early to avoid the hustle and bustle of boarding unfamiliar transportation that could cause undue agitation in an individual with dementia.
Plan breaks in your day:
While travel can be a rushed event, planning breaks for quiet time can be especially important for caregivers and care recipients working with the symptoms of Alzheimer’s or dementia. If flying, arrive early and take a chance to sit in a quiet spot for 20 or so minutes to wind down, or take a break from road trips to grab a snack at a quiet diner. These opportunities can give both you, and your care recipient, a chance to catch your breath. Bring an occupied sign for restrooms if your assistance is required. Carry a change of clothing and an item of comfort for your loved one.
Lugging an oversized bag around the airport is difficult enough when you’re alone. Doing it while acting as a caregiver on-the-go can be next to unbearable. Pack as lightly as possible, or check bags when possible. Keep a lightweight bag with you full of your care recipients favorite snacks, medications and emergency contacts in case of emergency. Less in your hands will help give you more attention to focus on your care recipient.
While not everything will be the same, it’s important to control what you can to help your care recipient feel that some of their routine is in place. Try to keep mealtimes and bedtimes on a similar schedule to at home, and whenever possible, schedule flights and drives around these times to help reduce the risk of unexpected agitation. Carry all medication with you instead of packing it in any checked luggage.
Have a “Plan B”
Traveling with a person living with memory loss and confusion Alzheimer’s disease can be an adventure. Due to unexpected agitation, confusion or disorientation, things may not always go according to plan. To help manage your own anxiety in case things get off track, try to keep an alternate plan in your back pocket. Plan for extra time, different places you can stop on the road for a break or alternate flights in case of major travel issues. You may also consider purchasing trip insurance in case of a need to cancel plans completely. Make sure someone knows your exact itinerary and ask for a commitment that they will come to you should you become ill or need extra assistance.
Take pictures of the family enjoying each other’s company and having fun. Although your loved one may forget the vacation experience in short order, they can enjoy your pictures and your stories about them much longer.
While traveling with a care recipient who has Alzheimer’s disease or some form of dementia can be a definite challenge, it can also be delightful. Caregivers may find that they, and their loved ones, are capable of taking some travel time away with the proper preparations and the right frame of mind.
Have you taken trips with your care recipient who has dementia? Leave a comment and let us know about your experience.
Content contributed by ClearCare Inc.
Alternatives to quitting work for Family Caregivers
Family Caregiver Alliance
Karen is passionate about her career. For nearly a decade she has worked with the same local law firm as a legal aide and truly enjoys contributing to the business. However, since Karen’s mom was diagnosed with dementia last year, she has found herself needing to spend more time away from work transporting her mom to and from doctor’s visits and ensuring she has the help she needs to safely cook, clean and complete simple activities like bathing. As her mother’s dementia progresses, Karen fears that she may need to leave her job altogether and focus on caring for her mom, a prospect that she finds frightening due to the effect on her finances and her personal wellbeing.
Thousands of caregivers find themselves in the same position as Karen: needing and wanting to work, while simultaneously having to act as the primary caregiver for an ill or elderly loved one. While leaving the workplace often seems like the only solution for overburdened caregivers, this decision can have a devastating impact on a caregiver’s financial standing now and in the future, their health insurance coverage, and their feeling of self-worth. Work is often a place for caregivers to temporarily focus on something other than caregiving, and to have an identity outside of being a caregiver.
However, in today’s working world, there may be options available for you other than quitting a job. Technology has made working from afar a more realistic option, and an increasing number of caregivers juggling a career, their own family responsibilities, and caring for an ill or elderly loved one have made many employers more flexible with working caregivers. Below, we examine a few options that you may find useful in determining how to balance work and caregiving without stretching yourself too thin financially, or risking your own health and sanity.
Depending on your job, telecommuting may allow you to complete your work from a location other than your office, such as the home of your elderly loved one. Via email, online shared documents and telephone communications, this option calls for caregivers to complete work off-site, granting you the ability to manage your workload while being present for caregiving duties. With online time-tracking technology and the ever-increasing popularity of electronic communications, employers in an office setting may be open to offering a telecommuting option on a part-time basis to allow you time both in and out of the office to manage work-related responsibilities.
If the responsibilities of your position have become too much for you to juggle with your caregiving duties, consider talking to your employer about a job sharing arrangement. “Job sharing” allows two individuals to work part-time in fulfilling one position, thus reducing the hours required for your job while still ensuring that the work gets done for your employer. For some caregivers, job sharing or reducing hours may be coordinated with another family member to share caregiving duties during the time you’re at work; ensuring that your loved one has the assistance they need and you can focus on your job-related duties, rather than worry while you’re away. In deciding if this is a good option for you, talk with Human Resources at your job about how this will affect your health insurance coverage and retirement plans.
Creating a Network of Help
If adjusting your work schedule or hours isn’t an option, you might consider creating a patchwork of family, trusted friends and neighbors who can assist you with checking in on your elderly loved ones while you’re at work. For example, perhaps a sister-in-law could stop by to help with the breakfast and morning pill routine a few days each week, while a neighbor drops in to help prepare lunch every now and then. By having a network of various, trusted individuals available to help when you’re focused on work, you can ensure that your loved one is having their needs met. Having multiple helpers creates a safety net of back-ups when work demands or unexpected situations make it impossible for you to be there . Online tools and calendars exist to help families coordinate care among multiple family members and friends. (Some examples: Tyze.com, LotsaHelpingHands.com, and CareZone). Also, if it’s in the budget, home care assistance coupled with the help of family and friends can provide additional senior care coverage. Adult Day Programs may also provide regular supervision and socialization for your loved one in a safe environment.
Communicating with your employer
While not all employers will be open to work schedule adjustments, many caregivers have found that it is best to be honest with your employer about your current personal situation. If you are comfortable doing so, let them know that you are currently acting as a caregiver and feeling jammed between your personal and work responsibilities. By presenting the above options as a way to ensure that you best fulfill both roles, and keep your talents and expertise with the company, you may find that you employer is willing to work with you, at least on a short term basis, to help ease your stresses – and also reduce their stress of having to hire and train a replacement.
In addition to the options above, talk with your employer about whether or not you are eligible for the Family and Medical Leave Act (FMLA). This allows for up to 12 weeks of unpaid leave to care for a seriously ill parent, spouse or child, while protecting job security at companies with 50 or more employees.
During the course of discussions with your employer, you also want to ask about the minimum hours required to keep your benefits with the company, and make a plan to keep your health insurance or other benefits in effect for as long as possible.
By reasonably addressing the pros and cons of “caregiver friendly” work situations, your employer may be able to become an ally in your quest to successfully manage caregiving and career. Our Fact Sheet on Work and Eldercare and Community Care Options may offer more tips and suggestions to support working caregivers.
Question to Readers: Have you found a unique solution to maintain your job while caregiving? Please leave a comment and share your experiences with other readers.
Content contributed by ClearCare, Inc.
Family Caregiver Alliance
As a caregiver, you may learn that things change in the relationship between you and the loved one for whom you care. For example, you may learn that the father you’re caring for is more willing to engage in activities when they involve other people, and less willing to do so when they involve you—when it was never this way before his illness. One caregiver’s personal response to this particular situation. . . .
“If I were in that situation, I would use my time to set up those activities with other people, and not worry about whether he is mad at me, or try to resolve that in any way, and I wouldn’t push him into activities with me.
When my mom was healthy, we had our share of conflicts, but now, we really don’t have any, and in part that’s because she’s become a much more passive person, but in part it’s because I accept her exactly as she is, and I let things go and understand that they’re really a manifestation of her brain impairment, and not really about me, or about our relationship. Heck, even if something IS about me, or our relationship, we no longer have the wherewithal to resolve it, so why worry about it in the least?
So if she doesn’t want to eat a particular food, for example, I don’t try to get her to remember that she used to like that food, and I don’t take it as a personal judgment about my cooking, or as a form of “acting out”. I take it more like an interesting problem to solve: okay, she won’t eat chunks of vegetables in soup any more. But she needs to eat vegetables. Hmmm…will she eat them if the soup is pureed, or the vegetables are finely minced?
This may sound strange or cold, but I often find myself fascinated by the way her brain works right now, so instead of being upset by something, I perceive it as something interesting to observe and ponder. For example, I noticed that at some point she started eating only the liquid part of soups, leaving the solid things. One day, she gave me an aggrieved look and pointed at the vegetables in her soup, saying, “What is all this stuff? Soup is supposed to be liquid!” Well, that may be objectively incorrect, but it’s her reality at this moment, so I try to make all her soups as liquid-y and unchunky as possible. And I think a lot about how much trouble she increasingly has with complex things (soup that is both liquid and chunky; sentences that are too long, or use words that she no longer grasps), and I marvel at the human brain, that in its normal state can deal with so much complexity, and ponder what kinds of things can go wrong in the brain to scramble its functioning in these particular ways. And I try to puzzle out what kind of “work-arounds” can make things accessible to her. Maybe it’s making the soup a different way; maybe it’s finding different words to explain something to her; or maybe it’s a change in how I see something, realizing that there’s been a fundamental alteration in her reality, and accepting that, no matter how things were last week or last year.
Once I see that she doesn’t like an activity, I drop it and don’t try to get her to engage in it again, even if it is something she used to love. Or if she doesn’t get engaged by a particular person, I don’t try to push that contact, even if it’s someone she “should” be interested in (e.g., a relative she’s known for decades), or someone she used to like. Instead, I try to notice what people can elicit some conversation or social reaction from her, and then try to get her around those people whenever possible. I have noticed several times when she is absolutely flat around me—no interaction, no engagement, no conversation—but she’ll get totally animated and even chatty around someone else, even someone she doesn’t even know very well. I absolutely refuse to take that personally. I’m just happy that there is someone or something that could animate her a bit, and, at times I even find it a great source of amusement. For example, a couple of times I’ve found her chatting up a storm, telling old stories from 30 years ago, to a woman who comes a few times a month to clean our house, who barely speaks any English. There’s my mom, who hasn’t said anything to me for two days except “I’m cold,” yakking away with great enthusiasm to the one person in the house who can’t understand her. Watching something like that can be better than a good comedy routine, though of course it is also a huge tragedy.
I do worry a lot about the extent to which I should let my mom just sit there and be passive. . . . if it’s passivity with no evident unhappiness or distress—that’s something I’m trying to accept as okay.
Before I knew my mom had AD, and after she retired from her job (she’s was a life-long steamstress), she once complained to me, “People keep asking me what I’m doing now that I’m retired. I thought being retired meant you don’t have to do anything! Why should I have to explain what I’m doing?” Sometimes (a lot of the time, actually), it seems to me that she prefers to be doing nothing, and I try to accept that as a reasonable choice, even if it reflects her disease as much as the free will of an unimpaired person.”
- Jamie (Family Caregiver)
Family Caregiver Alliance
Recently, Sandy’s 82-year-old mother has agreed to having a helper come into the home a few times per week to help with meal preparation, grocery shopping and some light housekeeping. As age and arthritis affects her ability to comfortably complete these daily tasks, Sandy and her mom realize that hiring an in-home caregiver will allow Sandy to maintain her current work schedule while ensuring that there is someone available to assist her mother during weekdays. While both Sandy and her mother are excited about the prospect of some extra help, they’re unsure of how to go about hiring an in-home caregiver.
Although there are many reputable home-care agencies, families are often caught off guard by news stories of in-home caregivers who are abusive, under-trained or completely unsupervised. Thus, researching home care providers and taking the steps to hire an agency, and caregiver, that best meet your needs can help ensure that your loved ones are safe and well cared for in the hands of an in-home caregiver.
1. Assess Your Needs
The availability of in-home help ranges from companion care to keep a senior company and assist with light housekeeping or errands, all the way to skilled nursing for individuals with debilitating health conditions. If you’re unsure of the best fit for your loved one, your physician, or an initial assessment visit from a home care provider can help determine what type of care is best suited to your particular situation.
2. Work with a reputable agency
Some family caregivers consider hiring an individual directly to provide the care, as opposed to hiring someone through a home-care agency. While working directly with a caregiver may provide some cost savings, it is important to remember that by choosing to do so, you’ll also be acting as an employer and be solely responsible for oversight, hiring, firing, background checking, confirming certifications, and more. By working with a reputable agency, you hand off a greater share of these duties enabling you to focus on your role as a family caregiver seeking help, rather than a family caregiver and employer.
3. Ask about caregiver background checks
There’s nothing wrong with being picky about who you allow to provide care for an elderly loved one. Be sure to ask agencies if they background check their caregivers and if so, what methods they use. If you feel uncomfortable about a home care agency’s procedure for screening caregivers, it may be best to trust your gut and use a different provider.
4. Inquire about caregiver training
Ask what training and certification requirements caregivers are required to meet for employment, if any. Basic certifications like CPR and First Aid may provide peace of mind that basic aid is available in case of an accident while the caregiver is on duty, as well as give you an idea about the hiring standards of the company. Special language skills or cultural capacity such as training to work with Holocaust survivors or LGBT community members may be important for your needs.
5. Ask whether the agency meets local certification requirements
Requirements for home care agency certifications vary from state to state. However, inquiring about an agency’s State certification status can help you gauge their legitimacy and ensure monitoring from regulatory agencies. For information on specific agency certification requirements in your agency, contact your local Area Agency on Aging (FCA’s Family Care Navigator can help with this), or your local department of senior services.
6. Evaluate the supervision process
With caregivers working in the home, a common concern of family caregivers is a lack of supervisory oversight. However, family caregivers have a right to ask about how the agency supervises the quality of care in the home. Ask about drop-in supervisor visits, and tools like home care software used to manage caregiver clock-ins and care plans during a shift.
7. Ask to meet potential caregivers
You probably want to make sure the caregiver that you choose is not only well trained, but that they are also compatible with both you and your loved one. Ask the home care agency about their process for matching caregivers with clients and ensure that both you and your loved one can meet the caregiver prior to their first shift to be sure the match is a good fit.
8. Line out billing ahead of time
Depending on the types of services provided by the agency, as well as the specific condition of your loved one, some in-home care services may be covered by Medicare, Medicaid or long term care insurance. Don’t hesitate to talk to the home care agency’s intake coordinator about the rate for services, as well as billing practices ahead of time to help avoid unexpected charges.
9. Ask for references
For assurance about the proficiency of a home care agency that you’re considering, you have the right to ask for references. Most reputable home care agencies will be able to provide you with referrals of current clients or referral partners that can attest to their experience with the agency.
10. Talk about a care plan
When you’re paying for someone to provide in-home care, you’ll likely want to be sure that they’re addressing the tasks they’ve been hired for. Discuss a plan of care with the home care agency intake personnel and caregivers prior to the first shift, and ask about how the agency tracks the progress and completion of care plans. With a good plan of care, you can be sure that your loved one is having their essential needs met, be it help with keeping up the house or assistance with bathing. A plan for care helps make sure that that nothing significant is overlooked.
Accepting help from a home care agency can be a major change for both family caregivers and their loved ones. Choosing an agency to hire can be a time consuming process, but when armed with the right questions, you can help put your nerves at ease when choosing who to trust with the care of your loved one. More in-depth coverage of this topic is available in our online fact sheet, Hiring In-Home Help.
Have you had experience in hiring an in-home care agency? If so, please leave a comment and let us know what you’ve learned about how best to choose an in-home care provider.
Content contributed by ClearCare Inc.
Family Caregiver Alliance
Sally provides regular care for her who suffers from Multiple Sclerosis. Between doctor’s visits, helping with personal hygiene, and worrying about growing problems with walking, Sally has found herself suffering from an increased number of headaches and extra weight. Before her partners health decline, Sally attended weekly exercise classes and ate a more balanced healthy diet. However, now that she heads straight home after work, there’s not much time for the gym and she’s noticing the negative effect of more sitting and the late night eating in front of the TV.
Most caregivers know all too well the effect of stress associated with caring for a loved one. Family Caregiver Alliance’s Selected Caregiver Statistics fact sheet notes that 25% of male caregivers and 35% of female caregivers report high stress due to caregiving. From headaches, to increased blood pressure and weight gain, stress can have a significant impact on the well-being of caregivers. When caregivers feel better about themselves there is a greater inner reserve to draw upon to support caring for someone else.
Exercise Provides an Outlet
Unfortunately, there’s no magic cure for the demands of caregiving, but many caregivers may find some relief and relaxation via exercise. While pumping iron at the gym may sound unrealistic (or unappealing) to caregivers already short on time and energy, research has shown that caregivers can find health benefits and stress relief in everything from yoga to marathons. For caregivers struggling to find simple ways to fit activity into their daily routine, here are a few suggestions that can make an impact on your overall well-being without overwhelming your list with one more thing to do:
Stretching and strengthening your muscles while calming your breath is good for everyone, and especially good for those providing care to another person. A recent study of Alzheimer’s caregivers by UCLA found that meditative yoga practiced regularly for 8 weeks had showed improvement of depressive symptoms in 65% of study participants.
Yoga and meditation instruction online make it easier now more than ever to take a virtual class from home.
Walking is another wonderful physical activity that doesn’t require any equipment or extreme exertion, but can have significant health impacts. A regular routine of brisk walking, which can start at as little as 10 to 15 minutes a few times per week and slowly increase to 30 to 60 minutes at a time, can help lower blood pressure, raise good cholesterol, reduce body fat and give your mind a chance to relax. (The Mayo Clinic provides a short article on the numerous health benefits of walking.)
Gardening and Household Chores
All those household chores to get done, like vacuuming, ironing, cleaning the bathroom , or mowing the lawn …Can they be turned into beneficial physical activity? The stretching, lifting and increased physical exertion associated with chores that require you to get up and move around can benefit your health and mood. A listing by the National Heart, Blood and Lung Institute shows how much time doing each chore will gain positive benefits. http://www.nhlbi.nih.gov/health/public/heart/obesity/lose_wt/phy_act.htm. Go ahead, burn a few calories making those chores a little less onerous!
Weekly Exercise Classes
Some caregivers find stress relief in knowing that they have a regular break to look forward to. Regular exercise classes, which may include everything from a dance class at the gym to water aerobics at the community center, are a source of stability in a routine and an escape from the everyday rigors of caregiving. If this is an option you’d like to explore, but worry about a lack of time, consider hiring a home care agency to provide respite care for a couple hours each week, or coordinate with a family member or friend to fill-in while you take some time for yourself.
Caregiving is not always easy. Feeling stressed out, over-worked and even a little sad is normal. You may find that taking time for your well-being by practicing yoga, taking a trip to the gym, strolling down the street or even mowing the lawn, can have a noticeable impact on how you feel, both mentally and physically. For more information on making time for yourself, see our fact sheet “Taking Care of YOU: Self-Care for Family Caregivers.”
Content contributed by ClearCare, Inc.