You Became A Kinship Caregiver … Should You Put Respite Care On Speed Dial?

When your loved one came home from the hospital, you became a brand new kinship caregiver and while in the beginning you were as proud as can be at having been entrusted by the individual, your family, and the physicians with the care, the novelty of the situation may have begun to wear of. In the beginning you were awed at the level of responsibility for another person you now exercise and in some way it was satisfying to apply yourself to helping someone else unselfishly. This is especially true if you are a spiritual person who believes that one avenue of expressing your devotion to a higher power is the unselfish care and love for another.

Yet in addition to fulfilling your destiny, now that you became a kinship caregiver…should you put respite care on speed dial or is this an admission of personal weakness? Accepting respite care is no more a sign of weakness than taking a nap when you are tired or eating when you are hungry. It is instead a normal requirement that those who are not in a kinship caregiver position will not consider, understand, or most likely ever consider needing for their own lives. It is only when an individual does take on the care and intense relationship that exists between two people where one is dependant for life, wellbeing, and wellness directly on the other one that respite care becomes a need.

In the beginning of the kinship care relationship there is a bit of a honeymoon period when your energies are still running high and you are able to almost without effort juggle your life and household – and in some cases even family — and also another person’s life, wellbeing, household, and also family members. Over time, however, this newness is bound to wear off and before long you will become fatigued at the constant demand on your time that leaves you unable to meet your primary familial obligations as well and conscientiously as perhaps you believe you need to. This is especially true if you have children who clamor for your attention and do not understand why the other person is taking up so much of the time that you would normally have spent with them.

While you know that you cannot fault your children, you also know that you cannot leave your loved one and you are stuck in the middle, with frustration building and eventually guilt also taking its toll on your good spirits. To avoid burnout, the need for forging a good working relationship with a respite care organization or even multiple such organizations is highly suggested. Although it might appear odd to immediately try and find respite volunteer connections, does it not make sense to have everything put together for the time that you need the help? Is this not the reason why so many individuals carry an emergency repair kit in the care? After all, there would be no value in searching for emergency supplies after the problem occurs, but instead having them on hand in the immediate aftermath. The same is true for a relationship with a respite care organization.

When Respite Care Becomes Part of Your Hospice Arrangement

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.

When Cancer Sufferers Should Suggest Respite Care to Their Caregivers

Cancer is the kind of diagnosis that has most patients and their loved ones quaking in their boots. As feared as the word may be, the implications of undergoing long, painful treatments is sometimes only overshadowed by the fear of becoming a burden to those closest to you. After all, you are already tired, sick, and no longer able to do as much as you used to, and once you undergo chemotherapy or radiation therapy, the odds are good that this condition is only going to get worse. Having a kinship caregiver to help you make it through the worst of the illness is a godsend but as a cancer patient you will be wise to help your caregiver out – perhaps by suggesting respite care.

Even as you are scared of the treatments, stunned at the diagnosis you might not have expected, and of course overwhelmed by the implication of the fact that life will never be the same, there are some instances when you must also concern yourself with your kinship caregiver. There are a number of scenarios when cancer sufferers should suggest respite care to their caregivers, and you will be wise to keep an eye on your caregiver and ensure that in all the hustle and bustle of keeping you healthy, they are not running themselves so ragged that they soon need medical care as well!

For example, when you find that you caregiver is becoming overly anxious about your diagnosis, the odds are good that she or he is beginning to panic because they are on constant overload. Maybe your caregiver has been so focused on you that they have lost track of some of the pressing needs their own family is experiencing or maybe they realize suddenly that to keep up the kind of care they have lavished on you at the onset of your illness, they will need to not only quit their job but also kiss the family goodbye and move in with you. This is usually not a viable option and you will be wise to strongly urge your caregiver to apply for some respite care and get out of the house for a bit.

Suggest the utilization of respite care more strongly if your caregiver seems to become overly focused on your symptoms and is constantly poking and prodding you to make sure that you are not in pain. This may point to an inability to cope with your cancer and since your caregiver is the one who might be even more affected than you by the diagnosis – after all you are receiving care and might actually already recognize that you are on the mend – it is time to encourage her or him to seek out the help of a support group.

Of course, attending these meetings takes time away from you but if you can persuade your caregiver to seek out respite care for you while she or he attends the meetings and maybe also socializes a bit afterwards to talk about things that have nothing to do with cancer, you may find that your caregiver will come home refreshed with a healthier perspective on things that also helps to lift your spirits!

What Prevents UK Families From Seeking Out 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.

What is Respite Care and Why 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.

Understanding Timeframes in Respite Care

The term respite care has been mistakenly applied to a variety of short term care options for individuals who are convalescing, are terminally ill, or require nursing care. Although these patients do at times benefit from respite care, it is actually not they who are truly the recipients but instead it is their caregiver who enjoys this particular kind of care. Usually a loved one, friend, or close family member, the caregiver is an individual who provides around the clock unpaid care for a patient requiring such assistance.

Frequently the decision is made at the physician level since the illness or condition is not one that warrants hospitalization. Insurance companies have weighed in by cutting off funding for institutional care after a certain diagnosis is reached and maintenance care could be provided away from the institution. Since privately funded care is affordable only to very few in today’s society, the majority of thusly discharged patients are placed into the care of a willing family member.

Over time, the family member is stretched to the point of breaking. After all, more often than not she or he has a family of their own to take care of, children to look after, a job to perform, a home to keep up, and most likely also a host of sundry social responsibilities. Before respite care, there was nobody to take over the care of the ill patient when the caregiver needed to tend to such matter. This had led to instances of elder and child abuse, and even abandonment.

Due to the advances of respite care in the United Kingdom and the United States, governmental agencies have recognized that funding for such care is crucial to the success of the at home care system as it is currently in place. Understanding timeframes in respite care requires an understanding of the various forms this support system has taken.

* There is the short term respite care that may encompass only a couple of hours or maybe and evening off for the family caregiver. This is oftentimes used for an evening out with the spouse, a parent-teacher conference, and even just a shopping trip.
* Weeklong respite care places the patient in the hands of a capable professional caregiver who can take over when the family caregiver is on vacation.
* Both short term applications may be utilized at various times throughout the year.
* Supportive respite care is required when a family caregiver is caring for two or more patients requiring at home nursing or healthcare. This sometimes has the respite caregiver working side by side with the family caregiver to ease the workload.
* Depending on the organization that is primarily responsible for funding the respite care a family caregiver is to obtain, timeframes in respite may vary greatly and so will the extent to which the professional caregiver is able to go in their effort to support the individual.
* In some cases respite care takes place away from the home and in such cases the duration may vary depending on the program that is operating the center.

UK Charitable Organizations Provide Volunteer Respite Care

In the UK, charitable organizations provide volunteer respite care to those living in the general vicinity of the organization. In smaller towns and even rural communities this is frequently the most utilized means of receiving this kind of care since professional organizations are at times simply not thought of or carry long waiting lists. In other cases the professional organizations charge fees which are not feasible for the family experiencing the need for respite care and in such cases the volunteer organizations steps up to the plate to bridge the gap.

The advantages of this approach are plentiful:

* Respite care provided by a volunteer from within the community is most likely viewed less as a clinical arrangement and much more as a friendly visit of an acquaintance or peer. This is especially useful when care is provided by someone of the same general age as the patient whose family has applied for this assistance.
* Community volunteers may double not only as respite volunteers helping the family members get a break from continuous care, but also as a means of socializing for a house bound patient. Sometimes referred to as a “shut-in,” many a vicarage has already begun ministries with these individuals in mind. Although in some cases membership at the particular faith community is required, in the majority of cases it is immaterial if the patient or the family are members.
* Respite care provided by a volunteer affords more dignity than that offered by a professional. Perhaps it is the fact that hiring a professional is considered a bit of an abdication of responsibility, when a volunteer takes on the position of temporarily caring for the patient, the family member on break feels a lot less guilty about getting out of the caring environment for a brief period of time – even though there is little difference in the actual care offered by either a professional or a volunteer.

There are some times when volunteer care is not a good choice, however, and in such cases every effort must be made to either pair a care volunteer with a professional or to hire a professional outright. Usually this option is wisest when the care of the patient involves the use of restricted substances and is extremely involved. When hospice care is involved, a volunteer may not always be the right choice either, especially when death is imminent.

Many UK charitable organizations provide volunteer respite care with the help of highly trained individuals, but it never hurts to ask about the specific training a volunteer has undergone or the professional training she or he has received as well. In some cases the volunteer coordinators are brilliant at pairing volunteers with patients and their families based on certain medical needs and skills; in other cases it is a bit of a hit or miss proposition and the family member requesting the respite care volunteer needs to ask the necessary questions that identify the most qualified volunteer for the situation at hand.

Types of Respite Care for Adults

There are several different types of respite offered to adults in need based on the needs of the caregiver, and the needs of the adult 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 adult 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 Oregon Lifespan Respite Program

When it comes to state designed respite programs in the United States, Oregon is at the forefront of having crafted a comprehensive, workable, and overall user friendly bit of legislation in the form of the Oregon Lifespan Respite Act. The goal of this legislation is the empowerment of group and organization based respite programs with the help of a fiscal infusion from the very onset.

As funding permits organizations to train volunteers and also hire professional respite care providers, the level of care that may be offered to families in need soon is paraprofessional. At this time the organization is added to a database identifying those groups which have trained care providers that are available for a variety of in home respite services. To ensure that the organization starting up the program can continue on with the services, the state of Oregon has decided to continue funding groups that are members of its database and thus the initial investment is not lost but instead supported many times over.

Families in need of help with respite care may dial up the database at any time via the Internet and find out what the costs for the care are, if there are referrals available for the care of high maintenance and high need patients, and also to allow families from adjacent communities to find care in perhaps the next county or city.

The creation of the database has proven a most valuable tool in Oregon in that it offers an immediate method of connecting willing respite workers, the organizations that represent them, and families in need of their services. In addition, those interested in becoming respite care providers also find a unique way of networking and ascertaining how to train and specialize for work as a respite caregiver.

Another valuable function the database has shown to provide is a pinpointing service of areas – either geographically or medically – that are considered underserved. Such areas may be targeted with the help of outreach programs in order to establish organizations able to take on a respite care program and then work with them to recruit the workers.

There has been some confusion with respect to whether or not respite care services are provided free of charge to Oregonians. At his point in time this is handled on a case by case basis, depending on the family’s ability to pay, but by and large these services are for pay. Some of the exceptions are the respite care appointments offered by charitable organizations and faith based communities.

While these groups will offer their services free of charge, finding one that does not currently have a long waiting list is a harder task by far. Generally speaking, these coveted appointments are usually snapped up as quickly as they become available and families may need to either wait for a considerable length of time or opt for the for pay route. On the flipside, since the Oregon database is extensive, finding a plethora of organizations that may work on a sliding fee scale is not that hard either, and usually families and respite care workers will come to an agreement about fees rather quickly.

The ins and outs of Respite Care

Respite care is short-term, temporary care given to someone in need when the primary caregiver is in need of a break. The respite care is given in-home or outside of the home. Respite care’s purpose is to give the primary caregiver a break from their care giving responsibilities. The respite care may last just a few hours, several days, or long-term while the caregiver goes on vacation or when the caregiver is ill. Respite care can be planned in advance, or it may be an emergency situation.

Respite care can be done in the individual’s home who needs care, or it can be done outside of the home such as in a day care center, residential home, nursing home, or a hospice or it may be provided in the home of the respite worker.

Not everyone needs the same kind of respite care. Some individuals need only companionship, someone to come over and keep them from being lonely. Someone to play cards with and perhaps talk to. Other need light housekeeping, meal preparation; help with bathing, or dressing or even bathroom assistance. Others have more intensive medical help such as administration of medications.

The caregiver may have different respite needs from other caregivers such as length of time needed for respite (intermittent, substitute, daily care, emergency care, or long-term care).

Caregivers use respite care to avoid: burnout, depression, feelings of irritability, or anger, from becoming exhausted, being negligent or hating their care giving responsibilities because of being overwhelmed.

Caregivers should know that the best thing they can do for their loved ones is to take good care of themselves by scheduling regular breaks with the help of respite care.

In order to avoid caregiver burnout, caregivers should use respite care often, have phone conversations with friends, eat nutritious meals, get plenty of sleep, exercise on a regular basis, join a support group for caregivers, attend church, take time to pamper yourself on a regular basis.

When deciding what respite services are right make sure to interview all applicants, ask for references, visit out of home respite programs several times, ask to see certificates or licenses, and ask about training of staff. Meet all staff that will have contact with your loved one. Make sure you know about finances ahead of time and are comfortable with the arrangement. Make sure that the respite program is available when you need them and for the length of time and hours you need them. Ask if they provide transportation if it is an outside of the home respite program.