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.
For those of you who did not see my response a few months back. You are not alone. There are 65 million family caregivers in the US who provide 80% of the nation's long term care. Respite is critical to keep this backbone of support intact. To find respite, visit the non-profit federally funded ARCH National Respite Locator Service at www.respitelocator.org, or your local State Respite Coalition . The federal government now funds 24 States to establish Lifespan Respite programs to help family caregives navigate the labyrinth of services, regardless of the age or disability of the care recepient. Contacts for coalitions or Lifespan Respite programs can be found at www.archrespite.org.
Making me realize that I too, need to take time for me. I sometimes forget that. I've been doing this for the last 11 yrs with my mom & also took care of my dad til he passed away in 04. I now have Hospice coming in to help with my mom which is helping somewhat. But right now I couldn't do this without them!
Hi HannahLeigh, Thank you very much for sharing your situation with the community. I am so sorry to hear about the difficult time you have been having lately with your father-in-law. If you'd like, you can post your question in our Ask & Answer section (http://www.caring.com/ask) or share you story in our Forums (http://www.caring.com/forums). I hope that helps. Take care -- Emily | Community Manager
I am so depressed. I have been the primary caregiver for my mom going on 20 years no. I am extremely fortunate in that she is still quite independent at almost 90 years old. She still lives in her home, cooks for herself, and keeps her house tidy. I take her to all doctors appointments, monitor her meds and general health, as well as taking her grocery shopping and anywhere else she needs to go. My mom is not the problem...she is a pleasure. Several years ago, my mother-in-law passed away very suddenly. This was extremely difficult on the family including me as I considered her my 'other mother.' Since that time, my father-in-law has become my caregiving responsibility. I did not ask for this position, and I do not want to continue in this role. My FIL is a bitter man, has been since he lost his 'fortune' many years ago due to his own bad business decisions. He verbally abused my MIL for their entire marraige, and has always been prone to hissy fits if he doesn't get his way. He now projects all of his anger and bitterness towards me. His 2 sons refuse to do anything for him because 'they work' and don't have time. My FIL constantly complains about his life, that he is alone most of the time, that he doesn't have money to blow on non-necessities, etc. He expects us to buy him anything he desires including cars, computers, televisions, etc. He is indifferent to the fact that we purchased a condo for him, and have paid thousands of dollars on other things that he NEEDS. He refuses to have anything to do with old friends, and refuses to make new ones...he actually makes fun of and mocks new people he meets. He depends on me for everything from taking him to Dr.'s appointments to running errands for him, even though he can drive himself anywhere he wants to go. It's all about what he wants or doesn't want to do. I have talked myself blue in the face to my husband and his family to no avail. I have considered just leaving this selfish family and moving in with my mom in order to get a break from this situation. What do you do when you get appointed as a caregiver when you have no desire to take on that responsibility? I have spent the last week doing nothing but attending to my FIL and I am at my breaking point....this man knows no boundaries and if I attempt to enforce MY boundaries, he becomes even more abusive. We are not financially able to provide any type of home care for him, nor would he accept it if we could. He literally hates everyone outside of his family, and he acts like he hates us too especially when we tell him "no" to one of his many demands. He does not qualify for any kind of assistance because he receives too much in social security....and he wastes a lot of money because he thinks he deserves the luxuries in life. His latest complaint is that he cannot afford his medications and his doctors won't give him any more freebies. He brings this up every time I talk to him and he wants me to say we'll pay for it. We can't....we are strapped as it is paying for a place for him to live. I am so frustrated with his antics and demands I could scream. I probably sound like a big old whiner don't I? None of this is new behavior for my FIL...he has been this way as long as I've known him which is why his kids avoid him as much as possible. I feel guilty that I don't want to help him any more, but I also feel like my mom is getting the short end of the stick, because with his ever-growing lists of demands on my time, she doesn't get the attention she needs and deserves from me. So what do I do? Pack up and leave? Take it on the chin? Keep doing what I'm doing? Or something else? The situation has reached the point where it is simply too much for me to handle.
I too had the opportunity to care for my parents. My mother was living in our home when she passed away. As a caregiver I know how difficult it is to have someone to care for 24/7 with little or no relief. I too wondered if she would out live me. I was very fortunate to have help from my husband and daughter, but it was still exhausting. To all you wonderful home care givers out there THANK YOU for the love and devotion you are showing those who need you so very much. I know your lives have been put on hold and I know you feel unappreciated and exhausted but I also know you will be glad and happy you took this time to be with those you love. Please take people up on their offers of "if there's anything I can do just call" . Sometimes a meal brought in, someone helping with the laundry ,dishes or housework is such a blessing. But most of all having someone actually coming to see the caregiver and letting them know they are cared about too can be a blessing. Again, all you caregivers, Thank You for your love. I promise you'll feel the happiness in your heart in the future for the service you are giving today.
Hi Kailualuvr, Thank you for your comment. I'm so sorry to hear about the situation with your mother, that must be very difficult on you and your family. Have you talked with your mother's care facility about her options for assistance? Here are a few articles that you may find helpful for you as her caregiver dealing with stress and guilt: 4 Phrases Caregivers Should Avoid ( http://www.caring.com/articles/4-phrases-caregivers-should-avoid ) and 5 Caregiving Rules You Can Break (http://www.caring.com/blogs/self-caring/5-caregiving-rules-you-can-break). I hope that helps. Take care, I'll be keeping you in my thoughts -- Emily | Community Manager
It seems my mother's situation is so different. Out of an entire nursing facility, she was the ONLY patient to AWOL. Now we are dealing with mental disorders we have always known were there but a professional psych evaluation has confirmed same. She refuses psych meds. Even with this, I still wonder if I could have handled it differently. Having your mother in a locked down psych unit is not easy. Now, I am so scared about her placement. Where do we go from here?
I am a 20 year experienced Certified Nursing Assistant that specialize in the Quality of Life for family and persons living with Alzheimer. I have identified with a situation of lots of American that believe in family and refuse to put their family member in today's facilities. I have designed a program that will prevent caregivers burnout. Family gives Love professionals gives Care. Due to so many cuts in programs and medical expense are on the rise, "because NOW taking care of momma, kids, husband, job and try to have a social life has put me into the hosptial as well for overexhausion and dehyration. I am looking for investors, Backers, Family, that is willing to help me help them. We are looking for way to raise the Money to start The Respite House. A place where older adults can be among their peers and still go home with family. A place where younger family can go on vacation and Mom will be okay till we get back. A place where Quality of Life for all of the family is important.
Hi donnamills47, Thanks for you question. Sounds like a tricky situation. One great place to start looking for an answer is our Ask & Answer. You can post your question here: http://www.caring.com/questions/new/ Good luck -- Emily | Community Manager
True True True... Even a FIVE-Minute respite will help us. But I still need my coffee.
Wondering if anyone knows what the pay is for an experienced unlicensed live-in caregiver in North Carolina who works for a man who has had parkinsons for 28 years five days a week from 6am to 6pm duties and available 24/5 in case he falls or needs help? He is presently paying me $900 a month including room and board and groceries and he thinks I am "getting a good deal"!?? Would love to get feedback from someone who knows.
there is an organization here in NY called the Center for Disability Rights--I'm not sure if it's in other states, but,they do offer a program where by the family members of a patient can be paid to take care of them. The phone number should be listed in your local phone book. I hope this helps. God Bless
Thank you for this article. I find it helpful, it gives me an overview of caregivers needs as i was recently offered a part time opportunity to lead a respite program for caregivers. Thanks.
Hi Anonymous, Thank you very much for your feedback. We work hard to vary the use of the "he" and "she" pronouns throughout our site as we fully recognize both men and women are caregivers, as are care receivers. We apologize for your impression that we primarily use one over another. We'll continue to review our content to make certain we acknowledge all of those who are there for their aging loved ones. Thanks again -- Emily | Community Manager
Is it me, or was the opening paragraph unduly biased where a female has to be the caregiver and the male the person receiving the care? Hmm, also written by two females...could be!
You are not alone. There are 65 million family caregivers in the US who provide 80% of the nation's long term care. Respite is critical to keep this backbone of support intact. To find respite, visit the ARCH National Respite Locator Service at www.respitelocator.org, or your local State Respite Coalition . The federal government now funds 24 States to establish Lifespan Respite programs to help family caregives navigate the labyrinth of services, regardless of the age or disability of the care recepient. Contacts for coalitions or Lifespan Respite programs can be found at www.archrespite.org. To see more about buidling a national respite system, see the NY Times New Old Age blog at http://newoldage.blogs.nytimes.com/2010/12/31/wanted-a-national-respite-system/. Make a comment at the NYT site and let them know you want to see more coverage on this issue.
I have been taking care of both my parents in my home for the last 5 years, until my dad passed away 3 years ago. But my mom is now 24-7 care. I am the only one who cares for her. I am almost 70 now and have my own health issues. I don't seem to be able to find any Medicare respite care for me as my mom is not in hospice. Is there any avenue for me to get home health for her to help me. She has severe spinal stenosis , High BP, diabetes & host of other issues, including a physcosis.. I just need some help for me own well being.
Hugs Jill Grant
Great info to share with the caregiver. Caregivers tend to think they should not feel the need to get away. These ideas are great and give credibility to the honest situation one is in.
My husband had a massive stroke two months ago and it left his right side unusable. He is making progress with therapy; but I'm getting worn out just wheeling him to and from bathroom and bedroom and getting him in and out of his chair. No one seems willing to stay with him for very long: as he needs bathroom assistance; . so I can get out for some "me" time. I'm getting physically worn out. I'm almost 70 and have arthritis and back problems.
Hugs Jill Grant
This article! Was Very Very, helpful, for the next time I have to be a caregiver for my dad, again? Which, that probably want be too far ahead. I say, probably, around, Dec. 2010, or Jan. 2011, my sister and brother, will want me to take care of my dad again? But, I can't wait to see what happens then. I'll see?! Maybe so, maybe not? If so, I would have to think about that very carefully? Because, I, myself, have a disability also, that is why, taking care of my dad, was so very hard for me, and very hard on me. But, afterwards, I did get some help, but not enogh. ( Except for in the mornings, a lady came to my dads house, amd took care of him, for 3 hrs. , every day, that was my time, to have to myself. Sometimes, I would take that time, and sometimes, I would take that time, and just stay in my room ( at my dads house) and just have my space, just for me! To do what ever I wanted to do in those 3 hrs. 10:00am to 1:00pm, that is how much time I had, then I would take care of my dad all over again.
try a state funded program, in ohio it is passport or choices.
Bev, These are good resources for information about what help may be covered by SS or Medicare if there is any. I know this isn't much but maybe there will be a thread there you can follow. State Health Insurance Counseling and Assistance Programs (SHIPs) http://www.medicare.gov/contacts/Static/SHIPs.asp?dest=NAV|Home|RelatedWebsites|SHIPs#TabTop
I've been a caregiver for my husband for over 3 years now and people keep telling me i should be getting paid a salery for doing this. can anyone out there tell me if this is true and how to do it. im also on ss and so is my husband.help me , please...