Tag Archives: Caregiver Support

Teens Taking On The Role Of Caregiver

At a time when teens should be active in extra curricular activities, hanging out with friends and working at part time jobs, more and more kids are taking on the task of caregiving.

According to Dr. Julia Belkowitz, assistant professor of pediatrics at the University of Miami Miller School of Medicine, more than 1.3 million preteens and adolescents spend their free time caring for a family member with a physical or mental illness, or misuse substances.  The daily tasks include helping family members with eating, dressing, toileting, getting around, bathing and other common daily activities.

Dr. Belkowitz and her colleagues worked with the American Association of Caregiving Youth (AACY) in Palm Beach County, FL to gain an understanding of the experiences of these youth who were an average of 12 years old; 62% were girls & 38% boys. In addition to daily care, the caregivers also indicated that in some cases, they cleaned the house, shopped for groceries, administered medications, provided companionship and emotional support and other tasks that are beyond their experience and training.

While caregiving can be difficult for many adults, these teens are facing challenges and situations that shouldn’t normally be on their radar.  AACY is helping to raise awareness about the issue of youth caregivers and working to develop partnerships to better understand issues and provide the resources and support to this growing population of caregivers.

 

Celebrating Caregivers Year ‘Round

Although November is designated as National Caregivers Month although for anyone involved in the caregiving process, it is a year ‘round task when it comes to caring for frail, elderly or disabled friends or family members. The term caregiver means “anyone who provides assistance to someone else who is, in some degree, incapacitated and needs help: a husband who has suffered a stroke; a wife with Parkinson’s disease; a mother-in-law with cancer; a grandfather with Alzheimer’s disease…” according to the Family Caregiver Alliance.

The Alliance also notes that “family caregivers provide an estimated $450 billion worth of uncompensated care to loved ones annually.” Many senior organizations also note that family caregivers will remain the largest source of unpaid family caregivers in the United States. Given the advances in healthcare and medical treatments, many seniors are living much longer and in many situations, the family has taken on the role of caregiver rather than admitting loved ones to nursing home or assisted living care.

Caregiving By The Numbers

Reports and statistics compiled by various groups in the country point to these trends in caregiving in the United States:
• More women than men are involved in caring for an aging relative. Of those it’s been found that close to 35% of those individuals are caring for two or more family members.
• The average age of the female caregiver is 48. Although the average age of caregivers is 48, there are many caregivers that are, themselves, older adults (age 65 and older) and of those caregivers, close to one-third of them is in fair to poor health themselves.
• There are close to 66 million caregivers in the US and those count for up to 30% of the population that are involved in caring for an aged or ill relative.

There are many programs available to provide support for caregivers. The support ranges from information on available adult services in a specific part of the country, to counseling for the caregiver, support groups, training for caregivers and respite services.

How Can You Celebrate A Caregiver?

There are many ways in which you can “celebrate” a caregiver in your life or in your family. These ideas are ideal to put into practice not only during the month of November, but throughout the year. Being a caregiver is a sometimes thankless task and many caregivers are not comfortable reaching out and asking for a helping hand. How can you help? Here are some ideas:
• Offer to help out a caregiver. Whether it’s helping to prepare a meal or two, cleaning the house, running errands, doing yard work, or offering to sit with the seniors in their care so they can take a few hours, or a day, off will welcomed and appreciated.
• Host a get together for caregivers in your family.
• Contact a local community or senior center in your area and ask about hosing a Caregivers Awareness event.
• Send a card or a gift basket to a caregiver.
• Use social media to prompt your elected officials to promote legislation aimed at developing family-friendly caregiver policies

The numbers show that the aging population relies on family caregivers. Take time throughout the year to recognize their contributions.

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Is Adult Daycare An Option For Your Aging Relatives?

Caregivers, who are being celebrated in the month of November, understand the stresses of holding down a job and caring for their children in addition to caring for and worrying about their aging parents. There are several steps that can be taken to help relieve the burden on all involved and also help keep your parents engaged and involved.

Whether your parents or other aging loved one needs full time care or simply a way to get out of the house and be under supervision while you work or run errands, an adult daycare facility might be the ideal option. If you’re employed you may want to talk with your human resource department as many employers offer an Employee Assistance Program (EAP) which can provide valuable resources for family caregiving.

Check with your local Office for the Aging or other entity that provides senior services to inquire about costs for the program, services provided and whether there is transportation provided to the program. You will likely need to have an intake session with the program so they can understand your parents’ needs and you can decide whether it’s a good fit.

During your research you will find there are two main types of adult day programs:

  • One that offers intensive health, occupational and physical therapies and cater to those individuals with more severe medical issues, or
  • An adult day care program that is a way for aging individuals to spend time with peers, socialize and enjoy healthy meals in a medically supervised setting

Isolation is a factor that faces many seniors especially if they’ve lost friends to illness or death and especially if they can no longer operate a vehicle. Being involved in an adult day program is a perfect way to help your aging relative find and make new friends and partake in the planned activities. These programs also work to keep the senior moving and active as this can help them to better age in place and is ideal for good mental and physical health.

An adult day care center will provide the caregiver peace of mind and allow him or her to continue to work with the knowledge that their parent is being cared for in a safe and healthful environment.

 

 

 

Artfully Asking For Assistance With Caregiving Tasks

Asking for help is not something that everyone is comfortable doing. Even if you’re comfortable asking for it, there are some people in your family who will simply not hear what you’re saying.

When it comes to being a caregiver, it is easy to take on too much especially if you’re in the Sandwich Generation (those caregivers that are caring for their own families while caring for aging parents). It is easy to suffer caregiver burnout and as such it’s crucial that steps be taken to relieve some of the burdens prior to that happening.

How can you ask your family members to become involved in the tasks of caring for aging parents? Here are some tips:

  • Ask for help prior to needing it. Set up a time to speak with all of your family members at one time, if possible, to solicit help. Ask for their ideas on how the tasks can be more evenly divided. Do you have a sibling that would be happy to do yard work but really doesn’t want to have to cook, clean or pay your parent’s bills? Then take him up on the offer of the yard work. Utilize the strengths of each of your family members as a way to help you get back some of your own time and be better able to care for yourself and your family.
  • Don’t start the conversation with accusations of who’s doing more than someone else. If possible come prepared with a list of the items you, as the caregiver, are currently      responsible for. Being armed with a detailed list makes it easier to determine who can help with what and also makes certain that major as well as minor tasks are accounted for. Use the meeting time as a way to come together for a mutually beneficial solution for your parents not as a finger pointing session.
  • Be prepared for push back from siblings and be prepared for someone to bring up the idea of “putting mom and dad in a home.” These are sometimes natural inclinations when faced with elder care. If your parents are still able to live independently, that should be encouraged. If your parents are on the borderline of being able to age in place, consider gifting them with a home medical monitoring device and a personal alert pendant; this is a way to provide peace of mind to all involved in the event of a trip or fall or other medical emergency. Perhaps the family will need to come up with a plan for hiring a personal care aid, or a housekeeper or even someone to help with meal preparation or driving them to doctor’s appointments. Once you know what your options are, you can better plan.

Even though you may be facing burnout as a caregiver, you still need to approach the meeting with siblings with focus on helping mom and dad in addition to relieving some of your burden. Because everyone in the family is working toward the same ultimate goal – caring for your parents – the conversation should flow smoothly. If not, here are some tips on how to negotiate:

  • Be prepared with what needs to be done
  • Don’t be accusatory
  • Present the problem as one that is shared by all family members
  • Ask for suggestions other than ones you may have posed
  • Be flexible in addressing issues and don’t feel you need to provide answers to all of the tasks that need addressing. Getting suggestions from family members might just open the door to a solution no one had thought of previously

Don’t forget to invite mom and dad to the conversation and get their input on the tasks they feel they can take on themselves, and those for which they need assistance.

 

Helping Caregivers Deal With Stress

Along with the sense of satisfaction that comes with caring for an ill or disabled parent comes the stress. The reason for this double-edged sword is that it is challenging to not only care for the individual who cared for you for your formative years, but at the same time you may be juggling the responsibilities of your own home, raising your own children and the demands of a career.

When you’re caring for an aging parent you may have to negotiate time off from work to deal with their illness or take them to doctor’s visits and there will likely be the inevitable tension-filled family dynamics that could arise from one family member feeling he is shouldering most of the load to conflicting ideas on care and caregiving. All of these tensions can contribute to increased stress which can then lead to poor physical and emotional health.

If you find yourself in the role of caregiver for an aging parent, there are steps you can take to alleviate some of the stress, including:

  • Going online and looking for advice. Asking your family doctor for ways to cope.
  • Ask friends and family members for help. In many cases, one sibling jumps in and takes control without asking for advice or help and then resentments grow as he or she feels she is shouldering too much of the burden. You need to ask for help because if you don’t your siblings may not realize you need it. Additionally, when the health of your parent becomes too much to manage without specialized medical training, you will need to look for a trained in home medical professional to provide care
  • Look for a support group for caregivers. This could be a valuable resource and a great way to interact with individuals coping with the same stresses you are.
  • Make certain you take time for yourself. You need to be able to step away from the role of caregiver and simply relax or spend time with your family. Make arrangements with a sibling or friend or even a hired caregiver so that you can take a day or two off a week from the responsibilities.
  • Install a medical alert system and have your parents make certain they always wear their medical alert pendant. This equipment provides peace of mind for all parties in the fact that if you step away for several hours – or for overnights – you know that if your parent suffers a trip or fall or medical emergency all he needs to do is press a button and help will be available.
  • Fit in time for daily exercise. A walk around the block. A few laps in a pool. Any kind of exercise that gets your heart pumping can help alleviate stress.
  • Eat healthy meals. It may be tempting to drive through and pick up fast food for meals, especially when you’re pressed for time, but eating a well-balanced diet can help you keep your energy levels up.
  • Try to practice patience. This is usually much easier said than done. Remember there will be good days and bad days for your parents – and in turn, for you – you need to remember they aren’t doing or saying anything in malice, they are likely coping with mental health issues and that can manifest itself in being difficult and trying. When they are no longer with you, it may be a comfort to know you’ve spent quality time with them even though it may not have always been easy or gratifying.

Whether becoming a caregiver was a decision that arose from thoughtful deliberation or one that came about as the result of a sudden illness, it is something that should be thought about and talked about with both your parents and other siblings to make certain the arrangement suits everyone involved.

Helping Caregivers Deal With Stress

Along with the sense of satisfaction that comes with caring for an ill or disabled parent comes the stress. The reason for this double-edged sword is that it is challenging to not only care for the individual who cared for you for your formative years, but at the same time you may be juggling the responsibilities of your own home, raising your own children and the demands of a career.

When you’re caring for an aging parent you may have to negotiate time off from work to deal with their illness or take them to doctor’s visits and there will likely be the inevitable tension-filled family dynamics that could arise from one family member feeling he is shouldering most of the load to conflicting ideas on care and caregiving. All of these tensions can contribute to increased stress which can then lead to poor physical and emotional health.

If you find yourself in the role of caregiver for an aging parent, there are steps you can take to alleviate some of the stress, including:

  • Going online and looking for advice. Asking your family doctor for ways to cope.
  • Ask friends and family members for help. In many cases, one sibling jumps in and takes control without asking for advice or help and then resentments grow as he or she feels she is shouldering too much of the burden. You need to ask for help because if you don’t your siblings may not realize you need it. Additionally, when the health of your parent becomes too much to manage without specialized medical training, you will need to look for a trained in home medical professional to provide care
  • Look for a support group for caregivers. This could be a valuable resource and a great way to interact with individuals coping with the same stresses you are.
  • Make certain you take time for yourself. You need to be able to step away from the role of caregiver and simply relax or spend time with your family. Make arrangements with a sibling or friend or even a hired caregiver so that you can take a day or two off a week from the responsibilities.
  • Install a medical alert system and have your parents make certain they always wear their medical alert pendant. This equipment provides peace of mind for all parties in the fact that if you step away for several hours – or for overnights – you know that if your parent suffers a trip or fall or medical emergency all he needs to do is press a button and help will be available.
  • Fit in time for daily exercise. A walk around the block. A few laps in a pool. Any kind of exercise that gets your heart pumping can help alleviate stress.
  • Eat healthy meals. It may be tempting to drive through and pick up fast food for meals, especially when you’re pressed for time, but eating a well-balanced diet can help you keep your energy levels up.
  • Try to practice patience. This is usually much easier said than done. Remember there will be good days and bad days for your parents – and in turn, for you – you need to remember they aren’t doing or saying anything in malice, they are likely coping with mental health issues and that can manifest itself in being difficult and trying. When they are no longer with you, it may be a comfort to know you’ve spent quality time with them even though it may not have always been easy or gratifying.

Whether becoming a caregiver was a decision that arose from thoughtful deliberation or one that came about as the result of a sudden illness, it is something that should be thought about and talked about with both your parents and other siblings to make certain the arrangement suits everyone involved.

Tips for New Caregivers

New caregivers don’t generally have the resources or support system in place and many are thrust into this role rather quickly without adequate time to prepare. We offer a few tips that can help you get started.

1)      Understand your care recipient.  If you’re caring for a family member you might find that tip rather silly. In truth, however, knowing a person as your mother or father is a bit different than knowing them as a care recipient.  Your mom or dad may not initially care for the role reversal, for example. It’s important to get to know them through a more critical eye and notice the changes they are going through. Take time to talk with family members to learn more about the changes they’ve seen, their favorite hobbies or movies, essentially anything that would help you know them better.  It’s also important to review their medical history to the degree it is available.  By learning these simple, but valuable pieces of information, you will be in a better position to identify future changes in behavior or physical condition.

2)      Talk with your loved one about his or her finances and health care wishes. For your peace of mind and theirs, consider a Durable Power of Attorney for finances and health care. This planning can help reduce your immediate anxiety and better prepare your family for the future.

3)      Invite family and close friends to be involved in your loved one’s care. Caregiving can be exhausting at times particularly if you have many other obligations.  Make a list of all the tasks that are required as caregiver along with things such as driving mom to the doctor or the pharmacy.  Ask everyone to consider what they are willing and able to do to assist with care. Avoid the urge to feel you can manage this alone as you’ll soon find out that you can’t do so while taking proper care of yourself.

4)      Identify community resources and programs. Meals on Wheels, Senior Programs and others can be very valuable services. Medical alert services allow you the freedom to be away while still ensuring that your loved one has access to medical care should an emergency arise. Life simply can’t be suddenly placed on hold so find local programs to allow you to lead a balanced life.

5)      Find support for yourself. Caregivers often feel isolated as they take on more responsibility, and as their social lives move into the background. You may find a local support group or one online; groups that can help you muddle your way through the challenges you are facing. Don’t feel you need to go it alone!  Ask for help, as stated before, from friends, family, community programs and others you may find. Take care of yourself or you’ll have little to give to the one who is in need at this time.

Addressing Caregiver Guilt & Depression

Caring for an aging relative is a major stressor in the lives of many individuals and it’s only natural to feel guilt at times. Caring for an elderly relative while attempting to keep up with their own responsibilities can be difficult. Caregivers need to address any guilt and resentments they may have before they become an issue threatening relationships as well as both their physical and emotional health.

Adult children who find themselves in the role of caregiver also find they are plagued with guilt – or a perceived failure – in not being able to provide all that their aging relatives need. The guilt can also come from the caregiver feeling he or she isn’t spending enough time at home or isn’t concentrating enough at work. The guilt is exacerbated when the caregiver finds they need to take time off from work to deal with health or medical issues their aging relatives are facing. Guilt is almost unavoidable and is also detrimental to your health and the way you interact with your aging loved ones.

The guilt caregivers feel can arise from feelings of anger, sadness, frustration or resentment toward the relatives they’re caring for. The caregiver who is typically thrust into this role finds they have unrealistic goals and expectations when it comes to how they feel the relationship and role of caregiver should be versus what it truly is. In some cases, caregivers also find themselves back in the middle of sibling rivalries which can bring up unresolved family issues. Still other caregivers find the guilt arises because they worry that if they’d paid attention to their aging parents sooner they wouldn’t be in the situation they are now.

No matter the reason for the guilt, it is a very real, and damaging, emotion that strikes nearly every caregiver. When wracked with guilt, the caregiver may find themselves frozen in place, unable to make crucial decisions and second guessing their every thought when it comes to their aging relative.

Here are five steps to deal with and overcome the guilt and stress that comes from being a caregiver:

  1. To address the feelings, the caregiver needs to first acknowledge that they are actually feeling guilt. This is not easy for many people to even voice, but once you acknowledge it, you can begin to look at your feelings and your role as caregiver in a different light. In some cases the caregiver feels guilt at not doing enough or they get angry at their siblings for not helping enough and then feel guilty over that emotion. It’s a potentially vicious circle with no resolve unless you deal with it head on.
  2. Even when you’re a caregiver you need to understand that you have to take care of yourself and understand your own needs and wants. You are as important as the individual for whom you are caring and that needs to be front of mind, a viewpoint that leads to caregiver guilt.
  3. Acknowledge that you’re going to have good days in your role as caregiver and that you’re going to have days when you feel nothing but despair. You may also feel that no matter what you do for your relatives, it simply isn’t enough. Understand that just as you’re struggling, your relatives are also dealing with a lot of emotional issues at the loss of control they likely feel in their lives.
  4. Don’t feel bad about asking for help. Do you have siblings that live close that aren’t helping out? Call them and ask them to get involved. Don’t feel bad if you feel you need to hire a caregiver to come to the home on occasion so you can take the occasional day off and recharge your emotional and physical batteries.
  5. Realize that guilt is an emotion that nearly all caregivers are faced with and the best, and only way, to handle it is to not keep it bottled up inside. If the stress and guilt become too much, don’t be afraid to talk with your doctor and ask for help in coping with the rigors of being a caregiver.

In many cases, you – as the caregiver – are aging yourself and may not have the energy you had in your younger years to take care of both the care giving duties and your home and work obligations. One step toward helping you get away, enjoy a good night’s rest and get some “me” time is to equip your relative’s home with a home medical alert system. This system allows you peace of mind that while you’re away, your loved one is not completely alone and without aid. At the push of a button on the medical alert pendant, he or she will have access to a team of responders who can dispatch medical help or simply call you, friends and neighbors. A few hours for yourself, knowing that your loved one has easy access to medical help, can provide peace of mind and the break you need!

Common Caregiver Challenges

Taking on the position of caregiver can be a life altering role as you find yourself completely readjusting your priorities and reworking your schedule. While being a caregiver is ultimately extremely rewarding it is littered with numerous obstacles. Finding ways to balance your lifestyle and adjust to your “new normal” is not an easy feat, but if you recognize some of the universal obstacles caregivers face, you may be better able to grasp the position.

  • Time Management: Caregiving consumes a large portion of your time. Days seem to pass by in an instant, and you have less and less time to accomplish the tasks you once did on a daily basis pre-caregiving. Caregiving often decreases the amount of time you spend enjoying hobbies, going out with friends and going on vacation. With caregiving you quickly discover sporadic dinner plans and weekend getaways are a thing of the past. Everything you do has to be planned and pre-scheduled. While this may take a little more effort, planning “you” time is essential. Nothing helps you recharge like going out to eat with friends or going on a mini vacation. Scheduling time for yourself is essential for every caregiver.
  • Workplace Demands: While it is easy to schedule days you need to leave work early for children’s needs like soccer games or dance recitals, being a caregiver to the elderly does not afford you a set schedule. Emergencies arise and unexpected events may find you having to leave work early or come in late. The majority of caregivers say they need a workplace that is willing to accommodate their unpredictable schedule, but most caregivers are apprehensive about asking for more flexibility for fear they will get less preferential treatment.
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    Financial Stress: Being a caregiver is not only emotionally and physically demanding, it is very financially demanding as well. This is only exasperated by the fact that caregiving often cuts down on your work hours. The average caregiver spends approximately $5,500 per year out of pocket on caregiving. For those in the sandwich generation trying to save up for their own retirement and their children’s college tuition, this is a hefty sum. Long distance caregivers have an even higher financial burden with their out-of-pocket costs reaching an estimated $8,700.

  • Physical and Mental Stress: Caregivers often experience burnout because the mental and physical anxiety is so overwhelming. Caregivers develop feelings of depression, guilt and anger as a direct result of their caregiving duties. Further proving the absolute necessity that caregivers take time out for themselves. Caregivers tend to get so caught up in their daily routine they forget how important the little indulgences are to one’s mental well-being.

By acknowledging the common stressors caregivers are prone to, it may make it easier for you to cope with your new lifestyle. Sometimes just knowing you’re not alone is consoling enough.

Family Caregivers Support and Rights

According to the 2010 MetLife Study of Working Caregiver and Employer Health Costs report, sixty percent of family caregivers provide care for a loved one while also working outside the home. These responsibilities take a toll on health, emotions and family life.

Many caregivers are unfamiliar with protections afforded them by the government and organizations that can assist them in providing care for their loved one.

Federal Workplace protection is available in several forms:

  1. Caregivers can find protection under provisions set forth by the Equal Employment Opportunity Commission. If a woman is treated differently than her peers because of her caregiving responsibilities or a man is denied leave for the same responsibilities, protection may be afforded.
  2. The Family Medical Leave Act of 1994 provides employees the right to up to 12 weeks of unpaid leave over a 12-month period. Those caring for Veterans are allowed up to 26 weeks under the Support for Injured Servicemen Act of 2007. Certain qualifications must be met which can be found on the Department of Labor’s site.
  3. While on extended leave a caregiver’s employer must continue to provide existing health benefits and hold their job if all qualifications are met.

Not all caregivers need workplace protection. Many simply need support services and resources to help make their job a little less daunting.  Many organizations provide classes and training online or at a specified location.

  1. American Red Cross Family Caregiver Classes; The purpose of Family Caregiver Support Classes is to help participants gain an understanding of what is involved in caring for a loved one and know how to provide that care through eight one-hour class modules  covering topics such as personal care, nutrition, home safety and others.
  2. National Association of Area Agencies on Aging; Provides information and helps older persons and persons with disabilities live with dignity and choices in their homes and communities for as long as possible.
  3. The National Adult Day Services Association; The National Adult Day Services Association (NADSA) is the leading voice of the rapidly growing adult day service industry in the United States, and the national focal point for adult day services providers.

More Caregiving Support Groups can be found on our Support Groups page.

When it comes to providing this much-needed care, remember to take care of yourself and seek help as needed. There is no shame in  admitting you need assistance whether it be a result of workplace discrimination or simply finding someone to give advice or provide respite care in your absence.