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Caregiving 101

Updated: Oct 31

Essential Tips to Avoid Burnout


#caregiving #caregiver #carergiverburnout #Selfcare #occupationaltherapy

1. There are approximately 40.4 million unpaid caregivers of adults over 65 in the United States.


2. 9 out of 10 people in that group are caring for an aging relative.


3. Adults 45-64 are most likely to be caregivers and often balance the responsibility of caring for an aging relative as well as their own growing families (Pew Research Center).


When you become a caregiver to a parent or family member, it can be challenging to shift into different relationship dynamics. Your mental health can take a toll and you may get burned out easily if you don’t have steps in place to practice self-care, boundaries, and self-compassion. Taking care of someone we love can put a strain not only on that relationship but our interpersonal relationships, and relationship with ourselves.


I find that caregivers are often hesitant to talk about the struggles of being a caregiver. Talking openly about the struggles you are facing can feel like complaining or result in feelings of guilt. There are so many complexities around caregiving. It is important to remember that struggles related to being a caregiver are usually not a personal attack on the person you are providing care for but a result of a combination of factors.


I also find that many caregivers are reluctant to ask for help or do not know how to access available resources. It is hard to ask for and accept help when you don't know where to look. Keep reading for my top caregiver tips.


"You get from this life what you have the courage to ask for.'" - Oprah



Tip #1 - Create a Calendar


Start with a calendar. Write down everything that needs to be done. It is hard to manage appointments, medications, errands, and day-to-day chores. Using a calendar helps reduce anxiety by making sure you know what is going on and ensuring that you won't forget something important. I recommend starting with a monthly calendar. It helps you visualize the big picture. Daily or weekly calendars can help you organize more of the specific details of the day.

Play around with what kind of calendar (virtual vs paper) works for you. Some people like virtual calendars that offer unique ways to customize the calendar (sharing events or tasks with family/friends or setting alarms/reminders for events). Find what works for you.


Monthly calendars could include:

  • Doctor and therapy appointments

  • In-home healthcare provider visits

  • Reminders to order supplies and medications

  • Special events

  • Respite care

  • Menus

Daily or weekly calendars could include:

  • The following listed above

  • Weekly chores (laundry, grocery shopping, banking)

  • Exercise

  • Self-care

  • Daily gratitude

  • Any habits you are looking to develop

  • Schedule for bathing

  • Daily chores

Unsure of where to start? Check out these calendar options below:


Calendar Options for Caregivers-IOTS
.pdf
Download PDF • 59KB



Tip #2 - Decide what is necessary and what is not


We tend to be creatures of habit. Sometimes we go through our day doing things that we have always done. Take some time to think about everything you do during the day. Are you spending time on things that are not necessary?


Consider this example situation...... Sarah is the caregiver/spouse of Mike. Mike has advancing dementia and is having more trouble getting around and is becoming more easily confused. Mike always liked to go to church. Sarah wants him to be able to do the things he enjoys, and she knows that staying active will help keep him healthy. She has been taking him to church twice a week. It is a LOT of work to manage his walker and sometimes he gets agitated or antsy during the service, but she feels good that she is able to help him keep up with meaningful activity.


There is absolutely nothing wrong with Sarah taking Mike to church. There does come a time when it is important to weigh the benefit of the activity with the stress/effort. If Mike is having a hard time moving around and becoming confused/antsy in church, it might be time to reconsider that activity. These situations are really hard for caregivers because those activities that were meaningful for our loved ones are part of their identity and stopping/reducing/or changing that activity can feel like you are losing a part of that person. Could that time be better spent? Could you turn a church service on the TV or ask the religious leader to visit your loved one instead?


As time changes, our needs change but sometimes our habits don't. Consider how you are spending your time and energy. Think about what is really necessary and what could be removed/reduced/delayed/or delegated.




Tip #3 - Delegate - Ask for help


Many people find it easier to give help than to ask for help. Asking for help and allowing people to support you is brave and helps you build connections and a sense of community. People tend to naturally want to help and allowing those who love you and want to, can strengthen your relationships.


Sometimes asking for assistance out loud can be difficult. There are several apps and tools available to help you coordinate help. Making a sign-up list or developing a checklist of things that would help you are easy ways to let people choose what helping option fits in their own schedule.


Caring Bridge is a FREE online resource for sharing help updates with family and friends all in one place. Caring Bridge is most known for the meal train where your family and friends can sign up to bring a meal over. Click here to learn more.

It is very easy to get started. You register with an email, choose your privacy settings, and invite your friends. From the site, you can send email updates or journal updates. It can be really exhausting to make sure everyone important to you is kept up to date. From here you can easily share one update with all of your family and friends. There is also a planner section where you can list chores or tasks that need to be completed. Feel free to lay it all out so people can choose tasks that they feel best equipped to handle. For example, consider chores or tasks like walking the dog, changing the furnace filter, going to the grocery store, mowing the yard, and sitting with your loved one while you run errands). Sometimes people feel silly about asking for help with little chores but offering a variety of opportunities for your family and friends to support you gives everyone who wants to an opportunity to help out even in small but meaningful ways.


Lotsa Helping Hands is an app that can be downloaded on your smart device and provides several options for coordinating care, scheduling rides or errands, and sharing updates. Click here for more information. Everything is very easily managed through the app with a shared calendar so everyone you invite to be included can see what is going on and how they can help.

"Asking for help is a power move" - Brene Brown

Check out this short video clip of Brene Brown talking about asking for help.






Tip #4 - Schedule time for self-care


It is a universally accepted concept that you can't care for someone if you are unwell yourself. Being a caregiver can be physically, mentally, and emotionally exhausting and can lead to burnout. Taking care of yourself will allow you to provide the best possible care to your loved one.


Along with taking care of your physical health, it is important that you take care of your emotional, spiritual, and social health. You have the right to maintain aspects of your own life that don't include being a caregiver. It is important to maintain your individuality and create a life that will sustain throughout caregiving as well as when your loved one no longer needs your full-time help.


Try a few different ways to schedule time for self-care and see what works for you.

  1. Taking frequent breaks during the day

  2. Scheduling a block of time that is consistent each week (every Monday from 10-12)

  3. Scheduling a whole day every week or every other week.

Once you find a routine that works for you, make it a priority. Write it on the calendar and treat it as an important appointment. You would not skip a doctor's appointment and you should not skip an appointment for your self-care.


caregivers-infographic-508
.pdf
Download PDF • 733KB


“Self-compassion is simply giving the same kindness to ourselves that we would give to others.” - Christopher Germer



Tip #5 - Built a social support system


Isolation has been linked to caregiver burnout and can be associated with depression, anxiety, heart disease, sleep issues, diabetes, and obesity (AARP, 2020). Conversely, having a strong network of social support can reduce some of the effects of the caregiver burden. It can be hard to have time to develop new social connections, but the benefits are worth it. Consider creating a social network that can support you in several ways.

  • Physical or practical assistance (transportation, assistance with chores)

  • Resource and information sharing (information on community resources, healthcare professionals, and other caregivers)

  • Emotional support (other caregivers or people who understand and encourage you)

  • Feel-good support (someone who helps you laugh, feel good, or see things more positively)


Check out the Caregiver Club. It is a non-profit organization based in St. Louis through respite care and caregiver/companion outings. This organization is an awesome resource! They provide social outings that are both enjoyable outings for the caregiver and their loved one with dementia, but also provide a natural opportunity for caregivers to find support from people in similar situations. The outings are free to attend and have been designed to accommodate people of all abilities. They provide a wonderful opportunity to get out and connect with others in an understanding environment.



Tip #6 - Review the caregiver's rights


Caring for a loved one can be hard. You have the right to health, happiness, and self-care. Caregiver rights include the right to:

  1. Take care of yourself

  2. Ask for and/or accept help

  3. Maintain and express your sense of self

  4. Set boundaries

  5. Take pride in your work as a caregiver

  6. To get angry

  7. Seek out community resources

Check out this resource for the American Heart Association. If you are currently acting as a caregiver, I recommend you print this and put it somewhere that you can see it every day. Click here for more information on caregiver rights.


What Are the Caregivers Rights
.pdf
Download PDF • 298KB




Tip 7 - Know your local resources


Resources can vary depending on location, but there are awesome national organizations that can help guide you to find what resources are available in your area. Your local Area Agency on Aging is a great first stop.

  1. Start with your family and friends - Many people struggle with finding help and resources silently. You might be surprised by what your family and friends know.

  2. Churches or religious institutions - Many religious organizations have a community nurse who is able to point you in the right direction.

  3. Your local community center - Many municipalities have community centers that serve older adults and have specific information on recourses in your area.

  4. Check your county website - Most county or city websites have information specific to aging resources.

  5. Check with any disease-specific organizations - The American Parkinsons Disease Association, The Alzheimer's Foundation, or the MS Society all have amazing resources.

Day in and day out I witness the work of all the amazing caregivers out there. From the lens of a healthcare provider - nothing makes our job better than collaborating with a good caregiver. I see firsthand how difficult the healthcare system is to navigate from the inside and I know that it is even harder from the outside. I have the utmost respect for all the caregivers out there who put in the hard work to help their loved ones. You all are rock stars! If you are struggling, please reach out to your primary care or a trusted healthcare provider. I am adding a few additional resources below to find help in your area. Thank you for reading and for all you do.



Jenny - OTR/L, CAPS

Michele- Practice Manager




More Resources:


How are you doing? Check out this Caregiver Self Assessment to determine your well-being.


These websites help you find help in your geographical area:

https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx

https://eldercare.acl.gov/Public/Index.aspx


These websites provide excellent information for caregivers! I highly recommended saving both of these websites!

https://www.seniorlearninginstitute.com/

https://adaptiveequipmentcorner.com/




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