Obviously, I believe if you can, you should take care of your loved one at home. But (and this is a big but), if caring for your loved one creates ill-ease, animosity or unhealthy* stress, that is something you should re-think. Not everyone is cut out for caregiving. If you are not gifted with it, it can be more of a detriment than a benefit for both you and your loved one. Pray about it, seek counsel, and, PLEASE don't do it out of guilt! And, remember, just because you have to relinquish the majority of the care to an agency, doesn't mean you aren't still your loved one's caregiver. You can still take do many of the day to day things for your loved one; the main difference is that you go home at night and allow a trusted care facility to take care of him/her during sleep hours. Let's look at some frequently asked questions...
- What does caregiving involve? It ranges from light care (up to 10 hours per wk) to moderate care (10-30 hrs) to complete care (30+ hrs), and up to constant supervision (24 hour care). The loved one’s ability to do Activities of Daily Living (ADLs—balancing check book, grocery shopping, laundry) and Independent Activities of Daily Living (IADLs—bathing, toileting, grooming, dressing, turning over in bed) will dictate what kind of care is needed. For some loved ones, supervision is needed to protect them from danger or to make sure they don’t wander off, for others it amounts to doing all their IADLs for them.
- What is respite care? It is a temporary relief for family caregivers. It is a service in which care is provided for loved ones with disabilities, chronic or terminal illness, special needs or those at risk of being abused or neglected by over-stressed caregivers. We see respite care as a vital part of the continuum of services for families and the caregiver.
- What are the benefits of relieving the caregiver? Respite care reduces family stress, supports family stability, prevents abuse and neglect, and minimizes the need for out-of-home placement. It provides the caregiver with an opportunity to complete other kinds of business; they can just relax, get recharged and rejuvenated. People have reported that they also feel better about their loved one after they’ve had a break from caring for them. The relationship is less strained. This is a very important part of the reason for respite care.
- Why do caregivers need to give themselves a break once in awhile? One of the things seen in caregivers who do not get a break is health problems. These caregivers tend not to get proper sleep and may not have time to exercise, eat right or do other things that promote good health. They might not even be able to get out to their own doctor’s appointments without a break for themselves. This poses a real risk to the Loved One, because if the caregiver becomes ill, then who is going to take care of the loved one?
- Are caregivers who work outside the home also in need of respite? In some ways, caregiving is harder for those working outside the home. The caregiver works all day at a job (which others might think of as a break from the caregiving--not so) and then they come home to work all night caring for their loved one. Working isn’t a break—just an added stress. The loved one doesn't go off the caregiver's mind while at work. In truth, the caregiver may worry even more about the loved one while at work because they cease to have control at that point. Yes, people who work outside the home need respite care.
- Does respite take place in the home or in an outside facility? Either. There is in-home care for those who are immobile and out-of-home care for those that are ambulatory. A nursing home or adult day care could offer respite, or a friend or professional who can come to your home could offer respite.
- How does a caregiver know when he/she needs a break? Basic signs that indicate a caregiver might need a break are: irritability, sleep deprivation, negativity, anger, constant exhaustion (see How to Identify Caregiver Burnout posting), and weight gain, particularly around the mid section.
- How long a break is usually given? It could be as little as a few hours a week to as much as two weeks or a month, if a family wants to take a vacation together. But, it is temporary care only. It’s not something that is ongoing for months and months.
- What services do respite care workers provide? It could be anything from just companionship (sitting with someone, reading to them, having conversations) to assisting that person with their IADLs. The primary caregiver can tell the respite worker what is needed and what the best care is for the loved one.
- How do you find respite services? In most cases, it’s nice if people can use providers from their social circles (church groups, work friends, book club) because they’re people whom they know and trust. If that is not possible, go to an agency or organization that recruits and trains providers. It is encouraged to find providers that have some kind of training. Expertise among respite care workers varies (like child care).
- Who is eligible for respite services? Everyone is eligible for free care through their social circles! However, if you are seeking help from an agency, it varies tremendously, not only from state to state but within each state. The best thing to do is to call your local help agency to find out what the requirements are, or use your online browser to establish a respite connection. As of this posting the average trained respite worker gets between $25 and $30 per hour. Some help agencies in Santa Clara County include: www.aoa.gov (Government Administration on Aging), HHS.gov (Department of Health and Human Resources), or www.healthguide.org (non profit agency for help).
- When should a caregiver consider respite care? As soon as they become caregivers. Waiting too long can sometimes cause an explosive situation where stress is a danger to either the caregiver or the loved one. Situations where the caregiver has waited to find a respite worker can cause decisions about the loved one’s future to be made in haste (sometimes regrettably and/or irreversibly).
- Why are some people reluctant to consider respite care? Most issues of reluctance regard trust of putting loved ones into the hands of someone else. “No one can do it like I can.” “If I ask for assistance that means I’m not doing a good job.” If you are caring for a child, you might think that you could lose your parenting rights because you’re asking for help. The other issue that can come up is the availability of the respite services, or cost of these services.
- Who usually pays for respite care? Finding a friend or family member is always the best choice financially.Some of the caregiver's social groups might take up a collection to help out every once in awhile. If going through an agency, families can pay for their own respite if they are able to, and depending upon eligibility, there are a variety of funding sources. Medicaid often helps with fees. Private insurance rarely pays respite (but check your policy). Some respite programs have community funding or foundation funding. If you have paid into Long-Term Care Insurance, they will often pay for respite care.
15. What is the difference between Alzheimer’s and Dementia? Dementia is a description of the symptoms caused by a situation or disease. Alzheimer’s disease is one of the many diseases that cause dementia. So just because someone has dementia, doesn’t mean they have Alzheimer’s, and just because they’ve been diagnosed with Alzheimer’s doesn’t mean they’ll have dementia (although it is likely). Other diseases that produce dementia are Huntington’s disease, Lewy Body disease, Parkinson’s disease, Pick’s disease and vascular disease to name a few. Sometimes the cause of dementia is reversible in the case of depression, hypothyroidism, stress, medication conflict or even vitamin B-12 deficiency.
16. What is the difference between Assisted-living, Assisted-care, personal-care and Retirement Communities? These are all names of facilities that provide for people who are nearly independent, but for reasons of either mild physical or mental impairment need some help with ADLs (Activities of Daily Living; cooking, housecleaning, shopping, and laundry). Most of these kinds of facilities have on-site staff that can assist with medications and are available 24 hours a day for problems that could come up. They either have on-site care or they contract with agencies that provide personal attendants, nurses and physical and occupations therapists on an as-needed basis. Most residents of these kinds of facilities are able to perform IADLs (Independent Activities of Daily Living; personal care, toileting, dressing, bathing, and eating). Some facilities are either contiguous with or have arrangements with facilities that provide higher levels of care should the resident become more impaired, but others require residents to move when they become too dependent, so be sure and check into this ahead of time if moving your loved one would be stressful for them.
17. What is Sub-acute Care? This is a program designed for a patient’s continued treatment in a setting where the intensity of care is less than that in a hospital setting, but still provides continuous registered nurse supervision.
18. What is Rehabilitation? This is a program designed for patients whose hospital stay has left them too weak to return home, or who need more time and physical therapy to regain their independence. It is a temporary condition.
19. What is the difference between Skilled-nursing, Nursing Homes and Extended-care Facilities? These are all names given to facilities that provide chronic care. Stays must be short (less than six months) for those patients in special units designed for sub-acute, rehabilitation, respite or terminal (hospice) care. Other patients generally stay longer than six months. Nursing Homes provide 24-hour nursing care and supervision; most residents require some assistance with IADLs. A healthcare team of physicians, nurses, dietitians, pharmacists, physical and occupations therapists and recreation therapists monitor a broad range of patient functions.
20. Who Pays for Assisted Living? Most facilities must be paid for by out of pocket payments from family members or the loved one’s own savings. They can be very expensive, with rents upward of $3000 to $6,000 per month and additional services are usually extra. Some facilities require a very large buy-in fee, but then generally guarantee lifetime care, including moving patients to higher levels of care if necessary, with or without additional costs. Always do your research.
- Who Pays for Sub-acute and Rehabilitation Care? These are usually covered, at least partially, by Medicare. Note: Medicare will only cover up to a maximum of 100 days post-hospitalization for patients who qualify for this level of care.As of 2014, Medicare will pull you from the hospital or rehabilitation home once you have hit the 100 day mark, regardless of what your doctor says. If your medical insurance contains Long-Term Care, this is sometimes covered by that.
*There will be stress in every caregiving job; that's a given. At what point the stress becomes unhealthy is something you will have to discuss with your doctor.
Adapted from Coping with Caregiver Burnout by Shari Neufeld , MA
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