3 Different Forms Of Respite Care For Pediatric Patient Caregivers

Caregivers who are providing in home care for pediatric patients know firsthand that this is a mixed bag. There is a lot of stress and anxiety in meeting the needs of a child who suffers from a disability or perhaps terminal illness. In addition, the constant monitoring of medical equipment, meeting of deadlines with respect to the administration of medications and medical treatments, and of course the transportation needs associated with keeping doctors’ appointments, therapy sessions, and other office visits is sure to wear down even the most dedicated caregiver.

Sometimes the caregiver is a natural parent while at other times it may be a foster parent or a relative of the child. Respite care for pediatric patient caregivers takes into account the mixed emotions that go into the care of such a young person in addition to the close psychological bonds that exist between caregiver and patient. To this end, there are currently three different forms of respite care available in such situations for residents of both the UK and the US:

1. Day care centers specifically set up for the admission of ill children with a plethora of medical needs and disabilities are becoming part and parcel of the childcare landscape. In such settings there are highly trained personnel who will offer their services on a limited time basis. Sometimes they span only the time between one parent getting off work and the other one going to work. In other cases they may make up for the time that one parent spends putting in a full eight hours at a job. These kinds of pediatric patient caregiver respite care centers are found in hospitals, nursing homes, and also as part of some faith communities.


2. Respite care of pediatric patient caregivers that takes place inside the home may span a few hours – to allow mom and dad a night out on the town -- or just a few minutes to permit one caregiver to leave while awaiting the other caregiver to come home. In cases of emergencies that require the sudden absence of a parent, such short term respite care is also available at a moment’s notice.


3. Planned periodic respite care for pediatric patient caregivers is frequently spearheaded by the organization funding the cost for such care. In some cases it may take the form of a specially outfitted summer camp that allow the kids to experience a summer at camp while it gives the family a chance to vacation from the daily care giving duties. Usually this is done during the summer months, although there are also some winter camps available.

Because of the cost involved in respite care for pediatric patient caregivers, not all families in deserving situations are able to make use of the opportunities offered. While it is true that there is some governmental funding for various programs, respite care is one of the most underfunded programs currently on the books within the framework of the social services network and parents must depend on the kindness of donors to get the breaks they need.

Make Respite Care As Part Of Your Hospice Care Arrangements

Hospice care is defined generally as in home care to a terminally ill patient whose disease has progressed to such an extent that it is likely to have her or him succumb to its ravages within six months or less. The goal of hospice care is to permit the patient to die in the comforts of home, surrounded by loved ones, and away from the often times impersonal and constantly changing environs of the traditional hospital setting. Hospice care is a program that involves a team of professionals who not only see to the patient’s medical needs but also to the emotional wellbeing as well as any pain management issues.

When respite care becomes part of your hospice arrangements, you have probably already noticed that there is a lot more to this arrangement than even the most consideration definitions and generally speaking, a big chunk of care is still provided by loved ones and kinship caregivers. In the same vein, this is often the time that the family must come to terms with the fact that you will leave them soon and for some this is a harder pill to swallow than they might have initially assumed.

To this end respite care provides the opportunity for your kinship caregiver to get some alone time to just recharge and deal with something other than death, dying, and the sadness associated with the thought. In addition, since your caregiver most likely also has a family to look after, it only makes sense to enlist the help of a trained respite caregiver to take over for a while so she or he may devote the time needed to the care of the family. This kind of respite care is usually paid for my Medicare and administered in an actual hospice facility.

Transportation may be arranged with one of the contracted patient transporting agencies or you may enlist the help of your loved one to be taken to the hospice home. It is a little known fact that respite care in a hospice is covered by Medicare at 95% for up to five days at a time. After these five days you need to leave the hospice and your caregiver needs to once again take over being the primary care facilitator for you in your home. It is interesting to note that number of times that you may give your caregiver a break by checking into the hospice facility is unlimited.

When respite care becomes part of your hospice arrangements, your loved ones will usually breathe a bit easier. This is not at all a reflection of their unwillingness to care for you but instead it is simply a sign that they are as apprehensive as you may be about the turn your health has taken and how to cope with the implication of the diagnosis. Although terminal illness in context is often intellectually understood, dealing with it and actually embracing it as part of the natural process are two very different things indeed.

7 Procedural Questions Your Respite Care Agency Must Answer

Contracting with a respite care agency is a somewhat time consuming process, but by doing the homework ahead of time, you are certain not to have regrets and worries later on. Additionally, knowing exactly what kind of care is provided during a normal respite care visit and what kind of care is not included also will enable you to make financial decisions when it comes to planning for additional care that you or your loved one may require. These are the procedural questions any respite care agency needs to answer up front:

1. Identify the kinds of respite caregivers who will be sent out by the agency. Are these individuals who have extensive schooling in geriatrics or childhood development, are they holders of advanced degrees, or are these individuals who are primarily choosing respite care as a profession after having already schooled for different disciplines?


2. What agency training process is chosen to prepare the respite workers for their duties? In some cases this may be a college level class while in other cases this is training provided in house. Knowing ahead of time the level of training the workers have received can greatly increase your level of confidence in them.


3. What are the qualifications of the trainers? Are these trainers who have advanced degrees or are they respite care providers who have worked their ways up to the training and management area of the agency?


4. What is the emergency preparedness the respite care workers have received? While anyone is required to know CPR, is this a skill that is reinforced during agency training or is this something that is left to the individual worker to obtain from outside agencies? If the latter is the case, who is in charge of verifying that an appropriate course was chosen?


5. What background checks are conducted with new workers and how often are these checks repeated? The majority of agencies will check once upon hiring on a new respite worker and usually a basic criminal background check along with employment verification and also education or training verification is conducted. Rarely is a background check repeated at regular intervals. Drug testing is becoming more common, but once again it usually only takes place upon a new hire situation and rarely during the course of the employment situation.


6. What kind of experience does the respite worker assigned to your family have with the kind of care you loved one requires? This is especially vital in a case when a child suffers from a special kind of condition that also requires special care or background knowledge. If symptoms are subtle, the experience of the respite care worker makes all the difference in the kind of care your loved one will receive.


7. Finally, how will the respite care agency act when in case of an emergency you cannot be reached and neither can the next family caregiver on the list? Is there a definite progression of contact and also an agency protocol that will be followed in such a situation?
   
   

The Reason Why Some UK Families Can't Get Respite Care

There are deserving families in the United Kingdom who are not taking advantage of respite care opportunities. They include kinship caregivers who are living in the home of the patient requiring. Quite frequently the patient is a child or adolescent and more often than not there are other children living in the household as well. Complicating matters is the introduction of other extended family members into the household. While these family members are taking advantage of the present resources, they are not always participatory when it comes to the care of the patient in the home.

What prevents UK families from seeking out respite care is often a bit of a mixed bag. In some cases they are eliminated from various charity programs because of the bottom line income the main breadwinner may bring home. Even if a lot of the money is eaten up by the medical care the patient receives and the remainder utilized to keep the household afloat, because the income falls outside the values set by the administrators of the charity funding the respite care, the family is automatically eliminated without so much as an appeals process in place.

In other cases the family may have a misconception about exactly what respite care entails and they may be too proud to accept charity or welfare. Not understanding that there is precious little welfare involved in accepting respite care even for only short term occasions, the primary kinship caregiver is often worn out and does not receive the time off and the rest and relaxation she or he needs to deal not only with the stress brought on by a loved one’s illness, but also with the stress connected to the constant provision of care in the home.

Remember that the home to most is a place of sanctuary where they may go and recharge, get away from a workplace environment that may be hostile, and overall find that they are safe, accepted, and loved. To family caregivers the home is transformed into a hospital environment where they are the only nurse on duty 24/7 without a break or rest. Failing to take advantage of respite care relief may have detrimental consequences not only for the caregiver but also for the patient benefiting from the at home care. There have been cases of child abuse, elder abuse and also domestic violence as a result of a caregiver who has simply reached the end of her or his rope and still has not sought out help.

In other cases it is the restriction of the actual respite care organization that prevents UK families from seeking out respite care to help with their homecare needs. Some agencies will not deal with children in the home as soon as they reach their 18th birthday, even though there is precious little chance that the child will ever move out of the home and be self sufficient. This leads to a group of parent caregivers who are underserved and as such at primary risk of not only offering substandard care, but who may also be at a heightened risk of receiving improper medical treatment for their own medical needs. This in turn leads to a dangerous risk of early death, the loss of family members, and of course the potential need to institutionalize the patient.

Dementia Care Plan Along With Respite Care

While it is not at all certain how dementia is going to affect you and your family on a personal level, the statistics bear out the fact that this kind of illness is going to increase in the population in keeping with the advanced age the average individual is now attaining. Sadly, dementia cannot be prevented, cured, or even predicted in most cases, and for many there is little left to do but come to grips with a diagnosis that affects a loved one and which will spell out the need for a lifelong care plan as part of the overall care the patient must receive.

Incorporating respite care into a dementia care plan is not always readily considered; in part because the caregiver is so focused on the patient's health and overall wellbeing that it does not even enter her or his mind to think of taking time off. After all, there is so much that needs to be done, organized, and set in motion and in addition, the kinship caregiver is still in the early stages of care giving – just like the patient is still in the early stages of dementia – and as such the toll on the caregiver's sensibilities has not yet been taken.

Remember that the patient is going to slowly but surely become incapacitated with respect to living autonomously, to go on with day to day activities within society unless assistance is rendered, and at the more advanced stages of dementia there is the stated need for assistance with the most basic bodily functions. As you can see, incorporating respite care into a dementia care plan early on is a wise choice for the caregiver since it prevents resentment from creeping into the relationship and thus marring the overall care giving efforts.

For a wise dementia care plan and also to facilitate the setting up of a workable solution to everyday problems and eventualities, consider the foregoing:

• Set up a relationship with a respite care provider. You may opt for an adult daycare setting or for an in home caregiver to visit the patient in your absence. This may be either a volunteer respite worker or someone who is from a professional respite organization.


• Contact a home healthcare agency and see what services might be covered. When combined with respite care, the visits of a certified nursing assistant can give you a bit of an extra breather when it comes to meal preparation and also personal hygiene for your loved one.
  
• Have a medical emergency bracelet engraved that identifies not only you, the loved one, but also the treating primary care physician. Couple it with a medical alert notification if your loved one suffers from additional illnesses that she or he might not be able to communicate in an emergency.
  
• Consider the changes to the home that need to be made now and in the future to accommodate the patient's future needs. Although this might not be something that you want to perhaps tackle right now, knowing that it needs to be addressed at some point in the future can be of great help to someone who needs to budget carefully time and finances.
  
  

Does Your Term Care Insurance Policy Cover The Respite Care?

Term care insurance is sometimes also referred to as long term care insurance and it is the kind of insurance product that promises coverage in the event that dementia or prolonged illness in the latter year make care inevitable. As the name implies, this form of insurance is designed for the use of a person who may become a resident of a home in the latter years of life, but in some cases may also refer to the care a younger person receives who is suddenly disabled or unable to function alone within the confines of their home.

On the flipside, in some cases this kind of insurance product seeks to work with the patient and the next of kin to see if a happy middle ground may be found that will keep the patient in her own home but at the same time provide the necessary care with the help of home healthcare agencies, kinship caregivers, and also visiting nurses from the local hospital. This kind of care is preferable all the way around, but it requires funding and even though Medicare may pick up some of the tap, by and large it is preferable to have a supplemental private term care insurance policy to cover the difference.

Long Term care insurance is perfect for the payment of professional caregivers, but does it also cover respite care for the kinship caregiver? In many cases this is a question that is not considered when the policy is purchased and it may happen that an otherwise very well designed policy has this flaw and thus makes the kinship caregiver rather reluctant to commit entirely to the care of the patient in the home. Insurance agents are quick to point out that the ability to stay in your home is the primary reason why term care insurance should be purchased by any American, but family groups are pointing out that shopping around carefully for just the right policy may safe you more than money in the end.

Does your term care insurance policy provide for respite care? The odds are good that you have never actually read through the entire document but this very failure can come back to bite you. As a matter of fact, it is highly suggested that you read very carefully the fine print. In some cases respite care is an add-on that must be purchased separately in order to be covered. Ensuring now that it is part and parcel of your policy and knowing the extent and the limitations of the coverage can greatly enhance your possibility of staying in your own home even if you are suffering from a debilitating illness.

Additionally, understanding that there is a lot of room for interpretation as to what represents a qualifying event, specifically when respite care may be applied and how often it is available, which avenues need to be traversed in order to get the claim paid or the request for such services listed, and also what remedies, if any, your kinship caregivers will have against the insurance company if your interpretation of the policies and the interpretation of the company do not coincide in the manner that you are being explained at this time, can go a long ways to heading off future problems.

Respite Care For Postpartum Moms

Mothers who have recently given birth often need respite care in the first few days or weeks after the birth, especially if the birth was a difficult one, if there were medical problems with the birth or if the mom or baby had medical issues upon discharge.

Respite care for postpartum moms allows the new mom to take a break from motherhood in order to take care of herself. Her body has been stressed from the pregnancy and birth and she can use the respite time to relax and to focus on her own well being.

The postpartum mom may also need help with lactation and other support issues that arise for a new mom. Respite for the new mom may mean a neighbor coming over to care for siblings while the new mom learns from a lactation consultant the fine art of nursing her newborn.

The mom is usually the caregiver in the family, caring for the children, her husband, the housework, the meals and laundry. When her body is recovering from childbirth especially if she had a c-section birth she may need help with these task for the first few days home from the hospital. In-home respite care services cover light housework, meal preparation, and sibling care. Sometimes all she needs is someone to come over to watch the young children so she can take a nap.

When a mom or baby is ill upon discharge from the hospital a visiting nurse may be scheduled to check in on the baby or the new mom. The nurse may be there to weigh the baby, or check on nursing progress. She may be able to take blood pressure, or administer medication.

Postpartum moms are dealing with a new baby, hormones that are out of whack and a body that is healing from giving birth that may include stitches, soreness, and fatigue. The new mom is also dealing with bodily changes and a new milk supply coming in that can be uncomfortable. These are all good reasons for accepting respite care so that the mom can get used to these changes slowly or so that she can rest.

Respite care for postpartum moms can come in the form of volunteers from a local church bringing meals for the new mom, or the neighbor who comes over to watch the kids so the mom can take a much needed nap. When there is a medical problem respite care can help with medical needs of both baby and mom.

Respite care can help make the transition easier for the mom and also benefit all of the members of the family because all of the members are adjusting to the new baby.

Respite Care Can Prevent Elder Abuse By The Primary Caregiver

Elder abuse is a term that refers to the intentional and systematic abuse of a senior citizen. Sadly, this mistreatment is usually meted out for a family member of the elderly person. Most commonly, it is the same individual who is primarily charged with providing care for that person. Although always present in society, it is not until the increase in media coverage that this problem took prominent billing on the evening news, and some of the more shocking cases became nightly news fodder.

Hand in hand with the problem of elder abuse another problem surfaced: the need for skilled caregivers who at least temporarily can take over seamlessly for the primary caregiver. As a matter of fact, many instances of elder abuse were directly related to an overwhelming sense of frustration, helplessness, and anxiety by the elderly person’s family member charged with their care and day to day needs. As physicians, volunteer organizations, and also legislators began taking a closer look at the issuance of care, it quickly emerged that while much attention was paid to taking care of the senior citizen, very little help was offered to the drafted caregiver.

Respite care seeks to counteract this trend and in so doing, respite care prevents elder abuse. A skilled temporary caregiver takes over for the primary caregiver to essentially offer this individual a day off from the responsibility of caring for another person. As this task is usually a 24-7 undertaking, even just a few hours free from the crushing weight of this responsibility has been found to have a profound effect on the mental wellbeing and therefore overall outlook on life for those who are charged with caring for an elderly family member.

A task as simple as going to the grocery store to shop for needed staples or just the ability to take the dog down to the beach for a few hours are now known to provide the recharging of the primary caregiver’s own mental reserves which will then enable her or him to continue on with the care. In other cases it is the more frequent utilization of a respite care giver that allows a primary care individual to reestablish a social network. This may be done by permitting the individual to reconnect with a spouse or with a network of friends or members at the local religious faith community.

In addition to preventing elder abuse, respite care is also found to be instrumental in preserving the overall health of the primary caregiver. It is physically impossible to be on the job day in day out and not show some wear in the form of sleeplessness, irritability, poor eating habits, stress, headaches, fatigue, shortness of breath, depression, and of course anger management problems. When combined with the kind of respite care that is available during an emergency for the primary caregiver, the latter now is able to take care of her or his family needs in addition to those of the elderly individual. Cases of elder abuse at the hands of overwrought caregivers are now appearing to be on the decline.

The Administration Of Respite Care

Now that you already know that respite care is a great way for kinship caregivers to take some much needed breaks from the daily tasks of tending to a loved one, the next question that needs to be answered deals with the administration of the care. After all, you may already be sold on the idea of applying for respite care, but wondering how exactly this kind of care is administered might still have you wondering about the feasibility of the approach.

Generally speaking, different forms of respite care are offered for different patient groups. These patient groups are separated by age, illness or disability and in some cases also the extent of medical intervention that may be part of a foreseeable respite care assignment. Whenever possible, respite care is provided in the home to permit the affected individual to be comfortable and have all the items on hand she or he requires to be adequately cared for. For children in particular this is a much appreciated setup in that everything the child requires is within reach of the caregiver and there is little need to take the care outside the home.

For adults, the extent of disabilities and also illnesses dictate whether an in home respite care provider is indeed the best option or if there need to be other avenues. For example, for an elderly patient suffering from dementia, it is often required to take the individual to an adult daycare setting at a nursing home that is equipped to handle and treat patients suffering with this illness. Since dementia requires highly specialized care, this is not usually something that is offered on an in home basis, unless the risks of transporting the patient by far outweigh the benefits. In other cases the use of adult daycare centers provides a welcome opportunity for socialization of the elderly individual who might otherwise become adversely affected by being confined to their home.

In discussing the how and how much of respite care open to you, it bears repeating that many times the payer is the entity which determines just exactly how much care to allot. Eligibility requirements must be met and in some cases the available appointments are curtailed by the paying entity’s willingness to foot a bill. Upon determination of eligibility, as a kinship caregiver you are usually informed about the limitations of care and you may then decide how you want to take advantage of the time you are offered. Keep in mind that any allocated hours you do not use are generally lost and do not accumulate over the time period stated!

In other words, if you are offered 24 hours of respite care per month, do not hold on to them and hope to save up enough over three months for a three day getaway! Instead, if you do not use the 24 hours in month one, they are lost. Even partial hours that are still not used up will be lost if you do not take advantage of them in the time frame allocated to you.

Six Questions To Ask Before Hiring A Respite Care Agency

Not all respite care agencies are created equal. Although this truism should hardly come as a surprise to you, the fact that there are actually some very distinct variations in the kind of care that is provided and also the quality of care should give you pause and cause you to ask a lot of very detailed questions about the care you are about to invite into your home. Here is a list of questions to ask a respite care agency before you sign on the dotted line.

1. Does the agency require your loved one to be eligible for Medicaid?
   This is by no means a universal requirement and actually only a few agencies make it a prerequisite to care, but it is wise to know this ahead of time. Should it turn out that your loved one is not eligible, the agency may terminate care even if another payer is in place, and as such a relationship you and your family may have built with the agency is going to fall by the wayside.


2. Who will handle the funding details?
   Discuss this funding issue in detail. Respite care agencies will handle billing, costs, and associated tasks differently if the care is provided for a young child, a minor, or a senior citizen.


3. How long is the waiting list?
   Find out if there is a waiting list for services. Even if you are approved for funding and even if a certain amount of hours are allocated to you, the odds are good that the more sought after agencies have a waiting list for respite care workers. While a short list is most likely going to be the norm, a long list may be counterproductive for your respite care needs and perhaps you will be better served finding another agency.


4. What kinds of care do they cover?
   Learn about the scope of services offered by the respite care agency. Some offer respite care as only one component of patient care, and also count certified nursing help, home health nursing, and even home health occupational therapy among the services they offer. Contracting with this kind of agency for your respite care may enable you to test your loved one’s eligibility for the other services as well, and when combined with respite care, you may actually find that your loved one’s quality of life will greatly increase.


5. Are they all that good?
   Find out all the background check information that the agency routinely obtains from respite care workers. In some cases the checks are fairly extensive and include criminal and also financial backgrounds while in other cases it is simply a matter of running an educational and employment background check.


6. Are their knowledge about the rules still up-to-date?
   Do not assume that what applied to your friend's situation across the country a year ago will also apply to you. Rules change frequently and often, and there are distinct differences in local funding options available, making respite care not at all comparable in the United States. In the United Kingdom the rules are set up differently and since the country is by far smaller than the US, you will find that there the respite care programs are indeed quite comparable.
   
   

Is In-Home Respite Care Services A Better Option?

A respite worker is hired to come to the home of a loved one while the primary caregiver takes a break from caring for the individual. The respite worker typically works for an agency and has been recruited, screened, and trained to accomplish the tasks needed the by caregiver to be done while the caregiver is away. It is usually less disruptive to the individual in need of care when the respite worker is able to come into the home instead of the individual who needs care having to go to an outside facility for care.

The caregiver may however incur additional stress if the caregiver is worried about reliability and trustworthiness of the respite care worker. This is why it is so important to do proper interviewing and reference checking before hiring a respite care worker.

Using respite centers, adult day care centers, residential facilities, or adult day camps are often a better alternative because the facility will need to follow guidelines for respite care that assures the caregiver that the loved one will receive quality care that the caregiver can trust.

The in-home respite care option is clearly the better one when the loved one has difficulty with mobility, is severely ill, or where leaving the home would be emotionally or mentally disruptive. When the individual is cared for at home the individual is more comfortable with their surroundings and will be less stressed.

There are many options for respite workers when the care is to be done in-home. Other family members can care for the individual, or a neighbor, or friend who is already known to the individual. The individual will be more comfortable with family members, friends, neighbors or those from the church, caring for them.

Occasionally the person receiving care may be opposed to respite care if they do not trust strangers or are afraid to have strangers in their home. Having family members or friends come over to do informal care in the home is often the answer for these situations.

Barriers to in-home respite care: some barriers do exist for in-home respite care including unfamiliarity of the caregiver with the existence of respite services, quilt or anxiety on the part of the caregiver to have anyone else care for their loved one, cultural restraints due to family independence views.

In-home respite care is of benefit to both the caregiver and the loved one because being able to take a break relieves tension in the home.

Skills Developments For Respite Workers

Do you have what it takes to work as a respite worker? Respite worker skills developments take on a cornucopia of different methods and while some agencies require you to have an advanced degree in a related field; others do not make this a prerequisite for employment. Generally speaking, the skills developments that are found vary greatly and you will be wise to ask many questions prior to choosing any one particular agency over another.

• Respite workers who specialize in the care of children need to have a childcare background. Even though this does not require a four year degree, many agencies want to see some education – maybe on the community college level – that showcases an understanding of childhood development, milestones, and also basic child care skills.


• Agencies offer classroom training within their facilities prior to assigning the respite care worker to any actual cases. This is done not only to provide a uniform training of the workforce, but also for insurance purposes so that care workers understand the limitations of care.


• First aid is always a requirement and any respite care worker will know what to do in case of a first aid emergency.


• In some cases the respite workers will be specialists with respect to behavioral issues or certain disabilities. This is often the case in situations where the patient is a child or adolescent with special needs.


• Respite worker skills developments also determine the pay that the individual will receive. The more highly trained and specified the level of care a person may provide is, the more useful she or he will be to the agency.


• Background checks very widely and even though all agencies will check criminal backgrounds to some extent, they usually are somewhat rudimentary. Skills developments take precedence over other checks and the agencies employing respite care workers usually are concerned with sending out workers who are highly trained, reliable, and well versed in emergency procedures that are in harmony with the agency’s rules and regulations.


• Even as staff training is a point of differentiation, many agencies do appear to be quite comparable in the care that their respite workers will provide and frequently it is a matter of finding an agency that is on the approved list for the health insurance company or the hospice center that Medicare is working with.
  

Kinship caregivers who do not wish to be bound by these limitations have the option of contracting with any respite care agency or independent care worker that comes highly recommended and who may fit the bill. In some cases this might require a higher out of pocket expense for the patient or the caregiver, and it is wise to take this into consideration prior to making the decision of engaging the services of such an agency or care worker. Comfort also plays a vital role in choosing the right agency. Sometimes the money takes a secondary role when it comes to providing care for a loved one.

Respite Care Scheduling Issue

As you pick up your loved one from the doctor or hospital, you are without doubt given a plethora of leaflets, instructions, care books, and in some of them you are certain to find very specific orders with respect to times medication must be administered, the amount of time that needs to elapse before eating after taking medication but before taking another kind, how to time the various at home exercises your loved one needs to undergo, and most likely a host of other items that are going to place a serious demand on your schedule. It is not until you have had a chance to work with the schedule and familiarize yourself with your loved one’s reactions to the various medications and exercise routines that you can actually hope to get into a unique rhythm of your own.

Undoubtedly you are going to have to set up a schedule not only for yourself but also for your loved one. That said, you and your patient’s attitude toward this schedule will determine in large part if it is going to present a burden or instead a useful tool in the overall care. One item that should not be missing from this schedule is respite care. At the onset you might not believe that you need it, but given time, the odds are good that you will find the need becoming a pressing urgency. At that time the temporary respite care available from volunteers may no longer be sufficient to help you recover your own enjoyment of life and also repair any fissures in the relationship with your loved one.

Instead, make scheduling respite care a task that is observed from day one and taken as serious as scheduling the doctor’s appointment, shot, or exercise regimen. Surprisingly, for parents who are providing at home care to their own children this is one of the hardest things to do. It has little to do with not trusting a properly screened and trained respite volunteer to take over the care of the child for a brief period of time, but instead it has a lot more to do with seeing their need for respite care as an admission of failure and a lack of true love or caring for their child.

Nothing could be further from the truth, of course. Before considering any scheduling issue, caregivers must come to realize that they themselves matter as much as the person for whom they are providing the care. If the caregiver loses the ability to smile, provide physical help, be emotionally strong, and overall assist the loved one with day to day life, then the quality of care will not only decline but there is a danger that anger and resentment may actually take over.

Avoiding this problem is imperative but it can only happen when the caregiver acknowledges that the world does not revolve around the loved one. Yes, she or he is important and loved, but not the center of the universe. Being able to step back, recharge, and just have some time away from it all is the primary goal of temporary respite care and scheduling respite care immediately upon engaging in the kinship caregiver relationship will greatly heighten its effectiveness.

5 Limitations of Respite Care

As much as respite care workers enjoy their interactions with patients and their families and are more than willing to lend a helping hand, there are some items that are not covered as part of the respite care agreement.

1. Hospice care is not provided by a respite care worker. There is the option of having respite care under the umbrella of hospice care, but the functions performed by a respite care worker are dramatically different from those that are offered by a hospice nurse or caregiver. Respite care will only provide the basic kinship care that you would normally provide and is never interchangeable for any aspect of hospice help that the patient would normally receive.


2. Nursing is not part of respite care. This includes in most cases the administration of shots, measuring out of medication, or the running of tests, such as diabetes related blood glucose tests. Medication administration is a touchy subject and in a few cases it may be made part of the respite care, but usually this is not the case. The nursing component may enter into respite care arrangements if the care is provided at an adult daycare facility or a specialty location, such as a nursing home or other venue where highly specialized caregivers are trained to deal with a primary health concern a patient may have.


3. Emergency medical care is not the same as respite care and should not be factored in when interviewing possible respite care providers. Even though all respite care workers are trained in CPR and first aid, there is no emergency medical care provided as part of their service. If the need for this kind of care occurs, the respite care worker will contact the appropriate medical responders who will then transport the patient to an emergency room.


4. Child daycare services for parents who are working are not considered respite care. If you have a child with special needs who requires specialized care while you are at work, you may need to enlist the help of a specifically outfitted daycare center.


5. Respite workers are not handymen or housekeepers. While they will gladly change a light bulb or wash a plate, they should not be relied upon to do any kind of home repair or housekeeping.

Limitations of respite care vary from agency to agency and in some cases you may be able to individually contract with a trained respite care worker who is not working for an agency but who is taking on clients individually. Yet even in such cases the limitations are determined by the liability insurance carrier that is covering the respite worker and also the agency.

If you do choose to contract with an individual, make sure you spell out in detail the expectations of the care you have well in advance. In addition, request a copy of the insurance policy covering the liability of the respite care worker to ensure that you are not setting up yourself, the worker, or the patient for a liability lawsuit.

Types of Respite Care for Elderly

There are several different types of respite offered to elderly or senior citizens in need based on the needs of the caregiver, and the needs of the senior citizen being cared for.

Home based respite care is given for short-term respite needs such as when the caregiver needs to attend to personal errands, or needs a couple of hours off. On occasion home-based respite may include over night care. Respite workers who come to the loved one's home can be agency, other family member, friend, or community volunteer.

Respite can also be done in the respite worker's home for short-term care. The primary caregiver would drop off the loved one at the respite worker's home and then take a short break. Sometimes those who do respite care in their homes will advertise in local newspapers.

Day care home, or residential facility is another way to handle short-term respite care. Loved ones who are mobile can be taken to these facilities to receive short term care such as being able to socialize peer of the same age, participation in music programs, or arts and crafts. Exercising is usually offered and meals or snacks provided.

Respite care is often defined by the needs of the person being cared for. If the individual has some extensive medical needs than in-home respite care or senior citizen day care is usually not going to be appropriate. Individuals who need medical assistance can usually achieve respite care from nursing homes or hospitals. Sometimes hospices offer respite care for the terminally ill who are living at home.

Respite programs are set-up based on the needs of the primary caregiver, the needs of the individual needing care and also on the needs of the other family members. Sometimes the respite programs are available based on mobility of the individual being cared for or the service needs that they have. If someone is in need of companionship only then a neighbor, other family member or a community volunteer can be asked to come over and sit with the individual while the primary caregiver takes a break.

A good respite program looks at the needs of the caregiver in regards to time, ability to pay, and length of respite time needed. A good respite program also looks at the needs of the individual requiring care so that social, medical, physical, emotional and mental needs are met. The respite environment needs to be clean, safe and attractive.

The Many Faces of Respite Care

Have you ever wondered who the caregivers are that are benefitting from respite care programs in your area? Conversely, have you stopped to think about the patients for whom they provide the kind of care that would normally be offered by medical personnel if no family member were available to take care of the affected patient. Exploring the face of respite care does not paint a pretty picture, but it provides some much needed background that is sorely lacking in many of the discussions pertaining to governmental funding of respite care services and facilities.

• Respite care takes over when a parent caregiver loses a job and the home is threatened with foreclosure or homelessness occurs. During the time period it takes the family to get back on its feet, the respite caregiver provides the lion’s share of the caring for the sick child so that the adults can focus on finding a new home, moving their personal belongings, finding a new job, and getting reestablished.


• Emergency respite care is vital for patients of any age when abuse is suspected. A caregiver may have abused the patient or may have actually been subject to physical abuse by another family member. To allow the family caregiver to deal with the medical and psychological issues pertaining their own abuse, or to let authorities deal with the allegations of neglect or abuse against the caregiver, emergency respite care will take over the care of the patient who is caught in the crossfire.


• Military deployment – in spite of the application for a hardship discharge – is oftentimes another cause for emergency respite care. While the application for a discharge may wind its way through the system, the caregiver may still have to report for duty and in the meantime someone needs to take over the care of the patient until all the paperwork is resolved.


• Incarceration of a primary caregiver, disability of the individual, or a worsening of the patient’s symptoms or conditions also quite often require the services of an open ended respite care situation until another kinship care provider may be located.


• The birth of a child to the caregiver also requires the assistance of a respite caregiver. At times this may also be an open ended care situation, especially when the newborn child has its own medical problems, or the family caregiver decides she is no longer able to continue with the care of the other individual. Until another caregiver may be located, respite care will fill in the time.

As you are exploring the face of respite care, it quickly becomes obvious that there is a plethora of reasons why such care is a vital component in today's healthcare setup. What is harder to understand, however, is the lack of funding and accessibility to caregivers that are found in the respite care system. Many who are not only eligible to receive this kind of care but actually in desperate need of the assistance are unable to receive it while other programs that are by far less impactful on a large segment of the population do receive their funding.

What is Respite Care, Do I Need It?

In simplest terms, "respite care" provides the kind of caregiver who will come in when you need a break and take some time off from caring for a senior, a child with disabilities, or any other kind of care giving situation that may threaten to overwhelm you. Every person’s needs vary when it comes to identifying their own breaking point, but by and large there are several times when respite care is an identified need: usually it is the care of an elderly individual suffering from dementia, being the primary caregiver of a senior citizen who otherwise might need to enter a nursing home, tending to a disabled child, living with a loved one who is under hospice care, and also when you are adopting or fostering a child.

Various forms of respite care exist. By far the most common form is the one that takes place in your home. A respite care worker will be sent via an agency to your home where she or he will take over your place while you take some time off. You do not need to leave the premises although many kinship caregivers opt to do so. In many cases the respite caregiver is well trained in basic medical procedures and also has been trained extensively to provide a simple emergency care protocol as required. In your absence, he or she may provide a meal for the family member, help with basic toileting and other personal hygiene tasks, and also provide some form of companionship. In some cases, respite caregivers also offer services with respect to giving medicines, although this needs to be discussed ahead of time as not all agencies will offer this particular service.

Respite care in the US is greatly regulated and the rules surrounding it determine how often a kinship caregiver may take advantage of this kind of care. Depending on who foots the bill for the service, the incidents of respite care may be limited to a certain calendar day allowance per year. In addition, the age of the patient greatly influences the kind of available care appointments the caregiver may enjoy. Some kinship caregivers are initially unwilling to make use of this available care option and some wonder why they actually should consider it at all.

The fact of the matter is quite simple: no matter how dedicated you are to the patient, the fact that caring for an individual on a 24-7 basis is tiring and wearing will eventually catch up with you. To counteract fatigue leading to potential neglect and abuse, the idea behind respite care specifies that the kinship caregiver gets temporary time off and gets to just leave and do something they might have put off. In some cases the caregiver may opt to reconnect with a spouse on a weekend getaway while in other cases she may choose to just take the time to run some much needed errands that thus far had been going by the wayside. Not taking advantage of available respite care is usually not a good idea even if you believe you can handle the stress you are experiencing.