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I am a Caregiver

Am I a Caregiver?
  • Do you fill your mother’s pill boxes and keep track of her medication?
  • Does your schedule revolve around your son’s doctor’s appointments?
  • Do you prepare meals for your dad?
  • Are you always on the hunt for accessible playgrounds for your daughter?
  • Do you handle your parents’ finances?
  • Do you take the garbage out for your elderly neighbor?
  • Do you make medical appointments for your husband?
  • Do you put sticky notes around the house to help your wife remember important things?

If you answer yes to any of the questions, congratulations … YOU are a Caregiver!

Many people who take care of a loved one don’t necessarily think of themselves as caregivers. They are just mothers, fathers, wives, husbands, daughters, sons, sisters, brothers, neighbors, and friends who are doing what needs to be done. However, research has shown that people who self-identify as caregivers are more likely to seek support. And that is important, because research has also shown that far too often the caregiver will suffer an adverse health event and end up in potentially worse shape than the person they are caring for. So now instead of one person needing care, you have two.

Caregiver Self-Assessment Questionnaire
Not sure how caregiving has affected you? Take this caregiver assessment and see how you’re doing. You may be surprised to learn that this is harder on your physical and emotional well-being than you thought.

Preventing Caregiver Burnout

Caregiver burnout
We are so often focused on providing care for our loved ones that we neglect our own health. Things we used to enjoy become a distant memory, until one day, we hardly remember that we used to like to fish, golf, or garden. We’re so focused on caring for another that we forget to make time for ourselves, or even worse, we feel guilty for going with a friend to the movies, or spending the weekend with our grandkids. Even something as simple as reading a book becomes a luxury.

How do you prevent caregiver burnout?
As the old adage goes, an ounce of prevention is worth a pound of cure. Caregiving is no exception. It is important to have a system in place as early on in your caregiving journey as possible. Seeking respite in the beginning may help prevent future illnesses, exhaustion, and depression. Many caregivers wait until a crisis occurs before seeking respite because they don’t want to burden their loved ones, or they don’t yet feel like they need it. But seeking and accepting respite early on cannot only help you, it can help your loved one adjust to the idea of spending time with different people. And then if you find yourself needing more respite, your loved one will feel more comfortable spending longer stretches of time with a respite provider.

Caregiver FAQs

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Idaho Medicaid will pay certain types of caregivers. To find out if your situation qualifies, please contact the Idaho Department of Health and Welfare's Benefits Customer Service Center at 1-877-456-1233. If your loved one qualifies for assistance, they may be eligible for an array of services. Depending on your relation to your loved one, Medicaid may be able to compensate you for the care you provide. 

One option to receive payment is to become a Certified Family Home (CFH) provider. Certification as a CFH provider is a prerequisite to be a paid caregiver when you are also providing housing to your loved one. Visit the CFH program's website for more information, including contracts. 

Another method is to become employed by a Personal Care Service (PCS) near where your loved one lives and become assigned to your loved one as an employee of the agency. Your loved one can pay the agency fees and you would be paid as an employee. This is the appropriate option when you are not providing housing to your loved one, but will be providing hourly care in your loved one's home. For Medicaid participants, Idaho Medicaid pays the PCS agency for the participant's care and the agency pays you as it's employee. You may ask your regional Medicaid office for a list of PCS agencies in your area. It is possible to work short-term through a PCS agency while in the process of obtaining your CFH certificate

 

No. The ICA does not provide funding for respite care. However, it is the mission of the Idaho Caregiver Alliance to provide information and links that improve access to respite.
No. The ICA provides linkages to support and respite through the Caregiver Support page and 2-1-1 CareLine respite provider directory.
Leaving your loved one in the care of another for even an hour can be a source of stress and anxiety. However, as we know, it is imperative for the caregiver to have regular breaks from caregiving (respite). In an ideal situation, most caregivers would prefer to leave their loved one with a family member or friend, someone that the person they are care for knows and feels comfortable with. But oftentimes we must seek respite from a paid provider or volunteer. To help both the caregiver and the care receiver feel comfortable, it is important to find the right person and to make sure that the respite provider adequately meets your expectations and is well-suited to meet the needs of your loved one.

How do I choose a respite provider?

Choosing a respite provider can be a daunting task. Should you call an agency? Or ask your cousin Martha? Either way, remember that you have the right to interview the person who will be spending time with your loved one. If you don’t feel comfortable leaving, you’re not going to feel well rested when you come home. Before you choose a respite provider, here are a few tips to make sure you’ve got the right person for you and your loved one.

  • Create an outline of the qualities and skills you are looking for in a respite provider. Be specific. What personality traits will best suit your loved one? Do you need someone who will easily be able to read nonverbal cues? How important is a sense of humor? Are you looking for someone who can easily adapt to your loved ones mood changes? Do they need to be able to lift and transfer your loved one? Or provide wound care?
  • Develop a list of questions to ask potential candidates. Some examples may include:
    • What specialized knowledge do you possess? (Example: Are you an expert at defusing emotional outbursts?)
    • Are you trained in 1st Aid or CPR?
    • What is your experience caring for someone with ___________?
    • Why do you want to be a respite provider?
    • What are your strengths?
    • What are your weaknesses?
    • Share a scenario that the respite provider may encounter with your loved one and ask how they would handle it.
    • Get specific about the needs of your loved one and ask about the candidate’s comfort level.
    • What is your communication style and preference? 
    • How would you resolve disagreements?
    • Are you willing to take my loved one on outings?
    • Describe a difficult situation you encountered. How did you handle it?
    • Be clear about your expectations and ask the candidate what their expectations are of you.
    • Do you have a valid driver’s license? Auto Insurance?
    • May I conduct a background check?
    • Discuss your policy for planned vacations/absences. How much time will you need to find an adequate substitute?
    • If possible, include your loved one in the interview process.
    • Request at least 3 personal and professional references, and be sure to follow-up with them.
      • Verify the information the candidate shared with you.
      • Ask them to describe the nature of their relationship.
      • Ask about the candidate’s reliability, punctuality, and ability to handle stress.
    • Discuss time commitment and payment. Consider creating a contract.
    • Plan ahead: Discuss your preference for how taxes will be handled.
    • Schedule a training session so that the respite provider can “shadow” you and learn first-hand how to provide for the specific needs of your loved one.

Background Checks
Remember that it is your right as a caregiver to conduct an interview with potential respite providers, as well as a background check. There are many levels of background checks, from simple name-based computer checks to fingerprinting to National Sex Offender Registry checks. With the various levels of background checks comes a variety of fees. A good place to start is the Idaho Criminal History Unit housed on the Department of Health and Welfare website. You may also want to conduct a background check through the Bureau of Criminal Identification which is housed at the Idaho State Police Office.

When presented with the opportunity to take a break, many caregivers say they don’t know what to do with their little pocket of time. Many caregivers have been caring for their loved one for so long that they have forgotten what they enjoy doing. Once upon a time, didn’t you love to play tennis? Weren’t you a bowler, reader, writer, skier, baker, seamstress? Didn’t you play cards with your friends on Fridays, or meet for coffee on Tuesdays?

Sometimes caregivers want to get out of the house, but other times they’d just like to have some quiet time at home alone. Simple things like relaxing in a hot bath, reading a book, or gardening have become the luxuries of long ago.

Don’t worry if you’re not sure what you will do with a few hours to yourself. Here are a few ideas to get you started:

  • Read a book
  • Have coffee with a friend
  • Call your sister
  • Go to a movie
  • Watch a movie on the couch
  • Play a game of cards with a friend
  • Go to a museum
  • Go to church
  • Meditate
  • Take a walk
  • Go to the gym
  • Take a class
  • Garden
  • Take up yoga
  • Go for a bike ride
  • Walk the dog
  • Go shopping
  • Take a nap
  • Take yourself on a date
  • Go to the doctor
  • Get a massage
  • Go to the grocery store
  • Get yourself an ice cream cone

Try to avoid taking respite in chunks of less than 4 hours. Although that may not always be possible, if you feel like you have to rush home from the grocery store because you could only get away for an hour, you’re not really get the break you need – and deserve.

Plan ahead. Research shows that those who plan ahead report much more satisfaction with their respite time than those who do not. Choosing not to plan ahead can leave you feeling like you’ve wasted too much time watching TV or getting sidetracked by household chores.

Make sure you schedule time to do something you actually enjoy. Running errands without your loved one might feel like a bit of a break, but you’re probably not going to feel rested when you’re through. So be sure to build in some time to do something that you like, even if it seems frivolous.

Start early. Many people wait to seek out respite until they are at their wit’s end. But lining up a respite provider and taking a weekly break, even though you feel like you’ve got everything under control can prevent serious caregiver fatigue. And like many people, you may not even realize how stressed out you are until it’s too late.

Feeling guilty for leaving your loved one?
Research shows that when you take good care of yourself, you take better care of those you are providing care for. Having regular breaks allows you to rest, recharge, and return to your caregiving responsibilities with renewed vigor.

But nobody can take care of him like I can.
You’re right. Nobody is going to do it exactly like you do. You know you’re loved one better than anyone, and you’ve likely been doing this a long time. But it’s okay if it’s different. You may even find that your loved one enjoys spending time with a new person. Do your homework and find the best respite provider you can. Ask questions until you feel confident that you’ve found the right person, and then take the leap of faith and take a break. It’s good for you and good for your loved one.

Want to learn more?
California State University San Bernardino and the University of Utah have collaborated to create Time for Living and Caring: Making Respite Services Work for You. Professors of Gerontology, Sociology, Health Science, and Social Work offer a scholarly approach to the importance of respite for caregivers. 

Idaho does provide a Medicaid Waiver which includes respite services. To find out if you qualify, contact the Idaho Department of Health and Welfare at 1-877-456-1233. Additional information can be found on the Arch Respite website.

Watching someone we care about experience a challenging situation, such as caregiving, can leave us feeling anxious and powerless. Even though you don’t have all of the answers, or the ability to change the situation, there are a few things you can do to help.

  • Listen – provide caregivers with a non-judgmental ear
  • Offer assistance with specific tasks – It is our inclination to say “let me know what I can do to help.” But offering to help with specific things may increase the likeliness that the caregiver will accept help. Perhaps you can:
    • Sit with their loved one for a couple of hours so that the caregiver can have a break
    • Cook a meal
    • Mow the lawn
    • Run errands
    • Help with research on support programs, diagnosis specific information, etc.
  • Acknowledgement – something as simple as acknowledging the challenges that the caregiver faces can boost their spirits. Ask the caregiver how they are doing. They may be asked often how their loved one is doing, but many caregivers feel invisible. Let them know that they are seen.
  • Be an Advocate for caregivers

The Idaho Caregiver Alliance is a coalition of individuals and organizations focused on expanding opportunities for respite across the lifespan. The Idaho Caregiver Alliance was established in 2012 with funding from the National Lifespan Respite grant.

Whether you’re caring for a young child with disabilities, an adult with a serious illness, or a senior with memory loss, the Idaho Caregiver Alliance wants to make sure you have the support you need to provide great care for your loved one.

Having a list of detailed instructions for your respite provider is especially important when working with new providers, but can also come in handy for even someone who knows you and your loved one well. Having a document on hand that lists all pertinent details can alleviate confusion during an emergency and help de-escalate agitation.

Consider some of the following:

  • What is the back-up plan if a difficult situation arises?
    • What should the respite provider do if your loved one wanders off or is determined to leave?
    • What are the best ways to calm your loved one if they become upset?
  • What verbal or nonverbal cues should the respite provider look for?
    • Does your loved one exhibit any particular behaviors that may indicate distress or an impending blow out?
    • Are there certain external stimuli that create agitation for your loved one? (For example: loud noises, bright lights, certain foods, or television programs.)
  • What challenging behavior does your loved have?
  • What are the ground rules, particularly if the respite is taking place in your home?
    • Do you allow your loved one to watch television?
    • Is food allowed in the living room?
    • Are there certain areas of your home that are off limits?
    • Do you have an alarm system?
    • Are there pets in your home?
  • Does your loved one use any assistive devices such as a wheelchair, walker, gait belt, etc.? If so, be sure to explain the proper usage to the respite provider.
  • Does your loved one have any food allergies?
  • Is your loved one prone to seizures?
    • Are there specific instructions for how to deal with a seizure?
    • Should the respite provider call 911 if a seizure occurs?
  • Does your loved one require assistance in the bathroom?
  • Does your loved one have separation anxiety?
  • How should this be dealt with?
  • Who should be contacted in case of an emergency?
  • What medications does your loved one take? 
  • How often?If respite is provided in your home, be sure to include your address on the respite instructions, in the event of an emergency.

Plan time for debriefing after you return home. Ask open-ended questions about how their time was spent together and what, if any, issues arose.

Caregiver burnout is the inability to provide care due to overwhelming stress, anxiety, depression, or physical exhaustion caused by care giving.

We’ve all had the feeling of being at the end of our rope. We may find ourselves short-tempered, unable to concentrate, or lacking the energy to get out of bed. We may find ourselves crying at the drop of a hat, or feeling emotionally numb and apathetic. Although caregiver burnout may be expressed in a myriad of ways, it can be dangerous to both the caregiver AND the care receiver.

Caregivers who are experiencing caregiver burnout may develop heart problems, including high-blood pressure and heart disease. They may suffer from depression, which left unchecked may be debilitating. Caregivers may become suicidal or have thoughts of harming their loved one.

When caregivers are experiencing burnout, they are no longer able to provide the level of care they are accustomed to. Some of the signs of caregiver burnout are:

  • Exhaustion
  • Trouble sleeping
  • Depression
  • Anxiety
  • Loss of appetite
  • Mood swings
  • Loss of interest in activities you previously enjoyed
  • Thoughts of wanting to harm yourself or others

Caregiver burnout can happen to anyone, even the most level-headed and experienced caregivers. If you’re experiencing caregiver burnout, remember that you’re not alone and that it is okay to ask for help. In fact, asking for help is a sign of strength! Here’s a list of things you can do to help alleviate caregiver burnout:

  • Seek respite. You need and deserve a break.
  • Find someone to talk to. A friend, family member, mental health professional, pastor or clergy member, or healthcare provider, to name a few.
  • Journal. Keeping a journal is a great way to give voice to the nagging thoughts and feelings that may be overwhelming you.
  • Take a deep breath. Sometimes the simple act of breathing can calm our minds. You may also benefit from a gentle yoga or stretching practice.

Barriers to Seeking and Accepting Respite
Many caregivers resist the idea of taking a break. Although it may be apparent to friends and family that the caregiver needs a break, it is often difficult for caregivers to ask for help. Some of the barriers to accessing respite include:

  • Not identifying as a caregiver
  • Pride - Caregivers may not want others to know that they are struggling
  • Guilt - Many caregivers feel that it is their duty to care for their loved one. And if the care recipient is resistant to respite, this can increase feelings of guilt.
  • Denial
  • Access to qualified respite providers
  • Lack of trust
  • Cost
  • Stigma
  • Apprehension about exposing others to your loved one’s behaviors
  • Lack of resources in rural areas
Respite is a break from care giving. Respite is time away, if only for a few hours, to recharge your own batteries. Respite can be a walk in the park, lunch with a friend, or simply reading a book in another room without fear that you’ll be interrupted. Respite can be planned - like a vacation - or can come up suddenly with an offer from a friend. Respite can be paid for or provided by family members, friends, or volunteers at no charge. Respite can take place in your home or in a facility such as a day center. For more information on the types of respite, visit the Arch National Respite page and the ABCs of Respite.

The Veterans Administration (VA) offers caregiver respite and other supports for family members caring for a veteran. The level of support varies depending on when, where, and how the veteran served. For instance, those caring for a veteran of post 9-11 (September 11, 2001) service qualify for different supports than those caring for veterans of previous wars. To determine the level of support for which you qualify, contact the Idaho Division of Veteran Services at 208-780-1300 or visit their website. In addition to inquiring about respite, be sure to ask about the VA’s online Caregiver workshop series.

Anyone caring for a family member, friend, or neighbor is eligible for respite. Some organizations provide respite for specific populations like children with disabilities or older adults with Alzheimer’s disease. However, every caregiver owes it to him or herself to seek out and accept respite.
Respite is imperative to the health and well-being of caregivers. Caregivers who feel rested and rejuvenated are able to provide better care for their loved ones. Caregivers who have frequent breaks from their responsibilities are able to provide care longer than those who do not. Caregivers who receive respite are less likely to become sick or disabled themselves. And caregivers aren’t the only ones who benefit from respite. Those on the receiving end of care may benefit tremendously from having a new friend!

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