Family Caregiver Alliance
Earlier this year, Mark’s world was turned upside down when his mother’s Multiple Sclerosis took a turn for the worst, leaving her in a wheelchair and unable to care for herself as tremors and weakness made it difficult to even prepare her own breakfast. Since Mark’s mother and father have been divorced since he was a toddler, the role of being his mother’s primary caregiver has fallen to him at just 16 years of age. Now, with so much concern for his mom’s wellbeing, Mark has trouble focusing at school and the former straight-A student is trying to figure out how to make up for the days of school he misses when his mom is just too ill to leave alone.
Youth Caregivers Face A Unique Situation
While the vast majority of family caregivers struggle to strike a balance between different areas of their lives, such as work and a family of their own, young caregivers like Mark are faced with the unique problem of caring for a loved one while they still need care themselves. And while adult caregivers may have the option of taking leave from work, or reducing work hours, students are forced to find ways to continue their studies while taking on duties ranging from increased household chores to helping manage a parents’ medication schedule. All this while worrying that they may lose one of the people that they love most.
The stress of balancing these issues can be overwhelming for a mature adult; let alone a child or teenager who is still developing the management of their emotions, fear and stress. In fact, a 2006 study conducted for the Bill & Melinda Gates Foundation by Civic Enterpises found that a startling 22% of high school dropouts leave school to care for a family member.
Providing Support for Youth Caregivers
According to a 2005 report by the National Alliance for Caregiving, there are at least 1.3 million caregiving youth between the ages of 8 and 18 in the United States. However, many researchers believe that this number is low, as some families are reluctant to share their caregiving situation. Many ill, disabled or aging parents and their children are embarrassed by their need for assistance and are unwilling to volunteer information on their household needs with school or social services officials. This means that youth caregivers may be struggling in school or at home and potential resources—like teachers or special support programs—are unable to offer assistance that may help relieve some of the stress.
Caring for an ill or disabled parent or loved one is frightening at any age, and adult support systems in a youth caregiver’s life are likely to be understanding of this. While some schools offer innovative support programs especially for young caregivers, even those without programs in place may be able to offer support for youth caregivers that help to manage stress and keep kids in school. If you are a young caregiver, or a parent who requires the assistance of your child to manage a medical condition, sometimes reaching out is the first step to finding help. You may start by reaching out to people and resources below:
- Family members and friends can be resources for sharing caregiving duties while youth are at school, as well as giving young caregivers a trusted individual to talk to when their parent may not be available.
- School guidance counselors may be able to offer information on any special programs for youth caregivers.
- By talking to educators, like a trusted teacher, about your home life, you may find flexibility in assignments and support to help you succeed at school in the face of adversity.
- Local chapters of national organizations, such as the MS Society or the Alzheimer’s Association, may be of assistance in providing links to youth caregiving support groups.
- Local social service agencies may be able to help with financial assistance for in-home care or provide links to emotional support resources for the whole family.
There’s no doubt that youth caregivers face unique and difficult challenges as they work to complete their education, enjoy their youth and ensure their loved one is well cared for and safe. Without assistance, these children and teens are at a high risk of leaving school and missing out on a wealth of opportunities over the course of their lives. However, with a support network of other family members, educators and community resources, young caregivers will have a better chance of successfully navigating the challenges of growing up as the caregiver.
Content contributed by ClearCare Online
Family Caregiver Alliance
Bonnie has known life in a blended family since her parents first divorced when she was just seven years old. Today at age 45, Bonnie has four parents, her biological mom and dad, as well as her step-mom and dad all of whom she worries about as they age and begin to require assistance to stay in their own homes. She additionally has her own growing family with school-aged children to look after―both from her first marriage, and step-children from her current husband’s. Both she and her husband are concerned about his parents too as he and a sibling have already begun caring for his father, who is much older and showing signs of dementia. Like Bonnie and her husband, more and more adult children are facing the reality of acting as a family caregiver in a blended family setting.
According to a survey of 2,700 adults by the Pew Research Center, 42% of respondents reported having at least one step relative. Blended families can present unique challenges in all phases of life but when parents and step parents begin to face the struggles of aging family, caregiving can present unexpected difficulties―however there can also be advantages.
Caregiving with Step-Siblings
While it may appear that more parents means more caregiving responsibilities, families that include step siblings may provide additional caregivers with whom to share the burden of care. Individuals coordinating care in a blended family can work with siblings and step-siblings to share duties based on availability and skill set. However, there’s no doubt that for many caregivers, coordinating with siblings can be a challenging situation due to the fact that the heaviest burden generally lies on one person. (See our fact sheet, Caregiving with Your Siblings.)
Caregiving for and With Step Parents
Blended families can each have their own unique set of personality conflicts, politics and drama that require special handling. Having to face the rigors of family caregiving can exacerbate any existing struggles in relationships between adult children and parents or step parents. Whether you are faced with needing to care for a step parent with whom you have never been particularly close or are navigating care for your biological parent with the assistance from a step parent you have had conflict with in the past, it can be important to plan ahead in order to avoid excess conflict in the midst of already stressful situations.
Planning for caregiving in advance and by including the care recipient if possible can help diffuse tensions between blended families by allowing the care recipient to make their own wishes clear. This may include information for types of care, what to do in the event that they can no longer live at home and how the estate will be handled in case of death. While assigning an individual as durable power of attorney or creating healthcare proxies prior to a need won’t always resolve all of the potential emotional conflict, the boundaries and explanations may help everyone feel more secure. (Read our fact sheet on Durable Powers of Attorney and Revocable Living Trusts.)
Navigating Care With Respect
Regardless of whether you have a stellar relationship with members of your blended family or one that causes anxiety, it is important to understand that what each member of the blended family most wants is the respect of others. By doing your best to work as a team and by coordinating care in advance, you can work towards your end goal which is to ensure that a loved one is cared for. There will likely be unexpected emotions that present themselves along the way. Past conflicts may continue to present themselves but when it comes to caregiving with step parents or step siblings you may find that the best results are obtained by focusing on the task at hand.
Have you had experience caregiving within a blended family? If so, please leave a comment and share any tips you have on navigating this unique kind of family caregiving.
(Letter to the husband caregiver of a wife with Alzheimer’s Disease)
Family Caregiver Alliance occasionally posts blogs on “Caregiver Wisdom” . . . words sharing heart-felt thoughts and experiences from family caregivers. Thanks to those caregivers from the Link2Care program offered by FCA and California’s Caregiver Resource Centers for providing some of these. We invite your interaction―questions, comments or insights of your own. If you are a caregiver interested in providing advice for a future Caregiver Wisdom post, feel free to contact us at firstname.lastname@example.org with “Caregiver Wisdom” in the subject line.
I’d be surprised if there’s anyone [caring for a loved one with Alzheimer’s Disease] who hasn’t experienced the endlessly repetitive questions.
Your wife asks the same question again and again because she does not remember you’ve just answered it―or even that she has ever asked it before. But for some reason she does remember it’s important to her to know the answer, so she asks. Because she knows she can depend on you to know the answer.
Given that she has Alzheimer’s, her memory is not going to get better. Eventually she will forget that these questions are important to her; she may forget even the vocabulary she uses to ask them. I suppose you could call that the “silver lining” of advancing Alzheimers―being relieved of the irritation of having to answer the same question again and again.
Since she is still asking questions, she probably still has enough self-awareness to realize she has lost much of her mental abilities. That’s a very distressing realization, as you might imagine. And as the word suggests, distress is very stressful.
Nobody is at their best when under prolonged stress. People in your wife’s situation respond to this stress in various ways. Some become morose and depressed; some just become very sad; some go into denial―“There’s nothing the matter with me!”―but in unguarded moments may, like my mother, lament, “I just don’t know what’s the matter with my memory!” In some, the response is anger―anger at the entire world, even at whoever’s at hand. (You.) And some people become paranoid, convinced someone is hiding things from them (knowledge or physical items), stealing money or other possessions, etc. Hearing her doctor speak to you in words she no longer comprehends, she may become convinced there’s some sort of conspiracy. (Her world has become a strange and scary place, and somebody must be to blame for that!)
So it’s important to ease her distress in any way you can, and never add to it. The question, then, is how to overcome your irritation so you do not communicate it to her. Does she have questions she asks day after day, and the answer to each is always the same? Some caregivers have found it helpful to write those questions and answers in a small notebook, something she can easily carry around in purse or pocket–and when she asks the same question again, they just say, “Oh, have you looked in your notebook? That answer is in your little notebook.”
Myself, I wanted to reinforce at every opportunity Mom’s growing conviction that she could always depend on me for anything she needed―whether it be the answer to a question or anything else. I believed this would translate into a much easier caregiving experience for myself, especially as her Alzheimers progressed. And I hold to that belief today.
So I didn’t bother with a notebook. Instead, every time she asked the same question, I treated it as the very first time (which, to her, it was). In answering her question, I made sure my face, tone of voice and body language expressed pleasure that I could answer her question for her―smiling, making full eye contact, etc. And if the subject matter was of an emotional nature for her, I would put my hand over hers or give her a gentle hug, and then suggest a cup of hot cocoa (her favorite) to brighten her mood.
I did all I could, at every opportunity, to communicate the assurance that everything was all right and that she was still a valuable member of our team. Like if she expressed concern about her memory etc: ”Well you know, most people do forget things more often as they get older. But between the two of us, I think we do just fine! Sometimes I answer your questions, and sometimes you answer mine! Remember when . . .” and I would speak of some question she had answered for me , even though it might have actually been years earlier. I did everything I could to help her feel secure and OK. I felt this would pay huge dividends down the road, and I believe it really did. As Mom’s worries eased, she finally relaxed into a kind of hazy, dreamy state where she knew everything would be OK because I would quickly take care of anything that seemed out of order.
I hope some of this is helpful.
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)