A book that has been around for a few years and is recommended by caregiver organizations is "The Comfort of Home: A Complete Guide for Caregivers."
Caring.com is an informational website with lots of info for caregivers. (There is advertising on most of its pages.) Caring.com has excerpted a section on the necessity of respite care from "The Comfort of Home." I've copied the excerpt below.
The final sentences summarize the article: "Respite care is not a luxury. It is necessary for the well-being of the person in your care and for you."
The authors say: "If you do not defend your respite time, you will not get it or the renewal it generates. Remember, caregiving is a marathon, not a sprint -- respite time helps you finish the race."http://www.caring.com/articles/family-caregiver-respite
The Importance of Respite for Family Caregivers
Excerpted from The Comfort of Home: A Complete Guide for Caregivers
Respite time: how to reduce caregiver stress and avoid burnout
Every caregiver needs respite time if she is to last. It may be hard to think of yourself and your needs at this time, but if you don't, your life will be consumed by your duties and you will burn out. Respite (a temporary break from responsibility) is not a luxury, it is a necessity.
Your friend or relative's level of disability determines whether he can be left alone and for how long. Care options include:
* asking a family member or friend to stay with the patient for an hour or two
* taking him to adult daycare (if ambulatory)
* employing a professional sitter or healthcare aide for a few hours a week or month
* hiring a college student (if skilled care is not needed) to stay with him
* enrolling the person in your care in a support group
Check with your local Area Agency on Aging for respite-care programs in your area. Larger churches often have outreach programs that include respite care.
However you are able to arrange for some help -- and it will take some effort on your part, it won't happen by itself -- commit to taking some time at least once a week to do something for yourself.
NOTE: To make this happen you will have to defend this time because other things will demand to be made a priority. If you do not defend your respite time, you will not get it or the renewal it generates. Remember, caregiving is a marathon, not a sprint -- respite time helps you finish the race.
Other ways for caregivers to reduce stress:
* Learn to say no. Good boundaries improve relationships.
* Control your attitude: Don't dwell on what you lack or what you can't change.
* Appreciate what you have and can do.
* Go on a TV diet. Find simple ways to have fun: Play a board game, organize family photos, listen to music you enjoy, read the biography of an inspiring person.
* Learn a time-management tool, like making a to-do list (specifically include items that you enjoy).
* Knowledge is empowering; get information about your survivor's condition.
* Limit coffee and caffeine.
* Find a support system and nurture it.
* Share your feelings with someone who wants to listen.
* Keep a gratitude journal -- record three new things you are grateful for every day.
* Memorize an inspiring poem.
NOTE: The #1 thing you can do to improve your situation is to acknowledge your role. A survey of family caregivers by the National Family Caregivers Association showed that spouse caregivers often refuse to accept that caregiving is a separate role from their role as spouse. The survey found that shifting this attitude -- accepting that caregiving is a separate role -- had a profound impact on their situation.
The job of long-term caregiving is too big for one person -- no matter how much love the caregiver has for the care receiver. Ask for and accept help from as many sources as you can find.
How caregivers can create their own respite zone
A respite zone is an area within your home set aside just for you, the caregiver. The idea is that this is your space. It can be your bedroom, the spare room, an office, or even a bench outside in the garden or on a porch. This is a place for you to take a break while the person in your care rests or is taken care of by someone else.
In creating your respite zone:
* Keep in mind what you want to do there. Reading? Painting? Writing? Gardening? Bubble bath?
* Identify the time you can get respite and how you will use it. Is it during the care receiver's nap time, when someone spells you? If you can only get a break at night after the person you're caring for is in bed, gardening probably won't be your respite.
* Identify free space in your home. Porches are good candidates, a spare room is perfect, maybe a corner of your bedroom. A screen can give you privacy if you can't close the door.
* Modify the space according to your needs. A reading chair with a lamp or a stereo headset. Keep whatever is necessary for your respite activity.
The goal is to give you a place of your own where you can find enjoyment in your own home and life. If searching the Internet is fun for you, your zone will be different from someone who wants to take a bubble bath and listen to soft music. Creative projects such as painting, sewing, writing, baking, gardening, and photography are excellent ways to absorb your attention and take your mind off your responsibilities.
Your respite zone should be just for you. You need to feel secure that your things are safe and will not be disturbed or discarded. It is important for your care receiver to understand that this space is yours.
Taking care of a debilitated family member or friend who may not recover completely can be an all-consuming job. However, if you allow it to consume all of you, what will happen to the person in your care when you collapse?
Respite care is not a luxury. It is necessary for the well-being of the person in your care and for you.