It’s no secret that being a caregiver is a large undertaking. According to the National Alliance for Caregiving and AARP, family caregivers spend an average of 24.4 hours per week providing care. In today’s world, many of us are more transparent about our mental health. Therefore, it’s not uncommon to hear about the mental strain a family caregiver may be experiencing. Feelings of guilt, exhaustion, frustration, and anxiety are all common when taking on the role of a caregiver and can make an already challenging time harder.

Signs & Symptoms of Caregiver Guilt

• Detachment– A feeling of going through the motions, knowing you have duties, completing them, but feeling no connection.
• Role Confusion– The lines of a relationship between a caregiver and a dependent can become blurred. You may start to feel like you are no longer a spouse, partner, child, or friend. This may lead to anger.
• Helplessness– Even after all you do, it doesn’t feel like you’re making a difference. It’s important to remember in the face of terminal illness, things may not get better. Your role may solely be to provide comfort.
• Depression– On top of the balancing act you may be doing, you are facing potential loss and may already be experiencing grief for the person you’re caring for.

In short, it’s important to remember that these signs and symptoms, among others, are common. Despite our best efforts, life changes when you assume the caregiver role. Change alone can be a driver of our emotions and well-being.

Combating Caregiving Guilt & Burnout

It’s easy to forget about or not see the priority in self care. However, it is best to be honest with ourselves about this. Pouring from an empty cup will impact your ability to be a present and helpful caregiver. You deserve an hour or two of good in each day. In other words, what makes you happy in life? This can be a time to read, go to the gym, or watch your favorite reality show. These brain breaks are just as good for your mental health as eating or sleeping. So, self-care is something you must block out in your calendar. Whatever it is, you deserve it, and those you’re caring for will understand.

Self-care also involves taking care of your health. Think of it this way: if you want to give the best care possible, it starts with you! Proper sleep, eating healthy, and getting fresh air are all elements of a happy life. As aforementioned, caregiving may take a toll on our physical health, but also our mental health. Consider talking to a therapist or clergy member about your caregiver experience. Additionally, ask someone to be your go-to. When you’re feeling overwhelmed have a designated friend or family member to lend a listening ear.

Try one of these things, if you feel a bit overwhelmed with your caregiver role.

• Consider buying into a meal delivery service.
  • Save time planning meals, shopping, and cooking. Meal delivery services bring this right to your door, and you’re in control of your order.
• Start your morning with fresh air.
  • Whether it’s a walk or eating breakfast outside you’re sure to feel refreshed.
• Keep a journal to track your anxiety triggers.
  • Grab a journal and write about your day and when you felt overwhelmed. This can help you find patterns so you can better avoid triggers. You can also find many prompt ideas online.
• Download The Mindfulness App and end the day with a meditation session to wind down.
• Create a “Positivity Playlist” with all your favorite songs.
• 10 Minute Declutter
  • Set a timer for 10 minutes, turn on some music, and pick up some clutter around the house. The difference a slightly more organized space can make will amaze you.

As illnesses progress, be realistic about care. Although it may not feel like it, there’s power in admitting you can’t do it all. This shows your intent to be a helpful caregiver. Respite services can be provided in-home to help give you a much-deserved break. Additionally, it’s important to prioritize conversations with the dependent party’s physician on when hospice or palliative care might be needed. In conclusion, keep in mind that opting for hospice care can be emotional; however, it should not be looked at as “giving up”. Hospice of Southern Illinois offers a team approach to care that makes sure your loved one’s end-of-life journey is comfortable and dignified.

Mental Health Resources

• Psychology Today Illinois Therapy Directory
  • BetterHelp
  • Headspace App
  • Calm App
  • Worry Watch App

Local Caregiver Resources

Are you a caregiver local to the MetroEast? If so, you can find support through AgeSmart! Get access to all things from caregiver support groups to educational resources to safety. Additionally, for those local to Southern Illinois, check out the Egyptian Area Agency on Aging for access to homecare programs, day services, counseling, and more.

Resources

Alliance, F. C. (n.d.). Caregiver statistics: Demographics. Caregiver Statistics: Demographics . https://www.caregiver.org/resource/caregiver-statistics-demographics/

Jacobs, B. J. (2022, August 23). Caregivers: Living With Guilt. AARP. https://www.aarp.org/caregiving/life-balance/info-2017/living-with-guilt-bjj.html

MSW, I. W. (2020, December 18). Caregiver guilt: Causes, getting help & ways to cope. Choosing Therapy. https://www.choosingtherapy.com/caregiver-guilt/#:~:text=Signs%20%26%20Symptoms%20of%20Caregiver%20Guilt,-There%20are%20a&text=The%20common%20signs%20and%20symptoms,not%20wanting%20to%20do%20it.&text=Resentment%3A%20feeling%20unappreciated%20for%20the,help%20and%20not%20getting%20it.

As of May 11^th, 2023, the federal government lifted the COVID-19 PHE declaration. The COVID-19 pandemic has certainly been a challenging time for everyone. It’s hard to believe that it has been over three years since news reports first alerted us about cases of the novel coronavirus in the U.S. Since then, we have seen the disease spread everywhere, resulting in widespread shutdowns, restrictions, and changes to our daily lives. The declaration of a pandemic by the World Health Organization and a national emergency by the U.S. Government were significant events that marked the seriousness of the situation. The implementation of masking and spacing requirements, as well as limitations on visitation within health care systems, were necessary measures to slow the spread of the virus and protect vulnerable populations.

Like many times in the past 3 years, the end of the COVID-19 PHE declaration comes with policy changes for many healthcare organizations. The National Hospice and Palliative Care Organization has provided an End of PHE Quick Reference Guide for Hospices. Here at Hospice of Southern Illinois, our staff is working hard to stay up-to-date on these changes in order to continue providing quality care to our patients, families, and the communities we serve.

As we reach the end of the PHE, it is important to reflect on the progress made and the lessons learned. This milestone provides an opportunity to assess the strengths and weaknesses of our healthcare system and to identify areas for improvement. Let’s continue to work together to ensure that we are providing the best possible care for those in need.

There comes a time where we all need a little extra help! Transitioning loved ones to a senior living community can be stressful and overwhelming. Many questions can arise, and information is key in making this important decision.

What are the Different Types of Senior Living?

The following Senior Living Community categories can be stand-alone or be part of a campus that includes several levels of care. Traditionally, types of Senior Living may be referred to as Levels of Care.

Independent Living (Private Pay)

Independent Living is perfect for individuals 55+ who are able to manage their activities of daily living and personal affairs. Think of someone who you’d label as “self-sufficient”. These campuses offer a variety of apartment sizes and fees are dependent on size and add-on services. For example, add-on services might include things like meal plans, housekeeping, and internet, however add-on services are not always included. No state licensure is needed to operate an independent living facility.

Independent Living (Housing Authority Communities and Senior Housing)

For a more budget-friendly option, there are options outside of private pay independent living. These may be referred to as Housing Authority Communities or Senior Housing. These housing options are designated for financially limited seniors. Instead of a staff, you may see a Property Manager overseeing operations. If you or a loved one need additional financial assistance, consider looking into Illinois’ Community Care Program through Medicaid. This program can provide services such as personal care and household assistance.

Assisted Living

Easily shown by its name, Assisted Living facilities are designed to accommodate individuals 55 and older who need assistance with personal care. However, this personal care is not the level of care provided in nursing homes. Care services vary due to ownership, but may include services like meals, transportation, or medication management. Additionally, these facilities may look similar to independent living as they usually are single apartments (rarely shared) offered in a variety of sizes. Assisted Living communities are licensed by the Illinois Department of Public Health.

Supportive Living Facility

For seniors who are 65+ and in need of financial aid through Medicaid, Supportive Living Facilities may be the perfect match. These facilities offer the same access to assistance as an Assisted Living Facility; however, they are licensed by the Illinois Department of Health and Family Services. Supportive Living Facilities are required to hire Certified Nursing Assistants (CNAs).

• Long Term Care provides personal and nursing care to persons who are unable to care for themselves. These facilities can be private pay or Medicaid or a combination of both.

• Rehabilitation Nursing Facility provides short-term rehabilitation services (typically post-hospital) such as Physical Therapy, Occupational Therapy, and Speech Therapy.

Memory Care

Memory care facilities are created to provide care to those living with Alzheimer’s and Dementia. Since care for those with dementia is so unique, these facilities are secured for safety and staff are required to undergo specialized training. Additionally, these communities are required to document what distinguishes the facility as appropriate for those with dementia. Your loved one can expect a smaller community with activities tailored for those with memory loss.

What Should you Take into Account When Choosing a Community?

• Level of care needed
  • Will you need temporary care or long term? What kind of support do you need?
• Payment Source
  • Will you opt for Private Pay or depend on help from Medicaid or other financial support (i.e. Veteran and spouse benefits)?
• Your lifestyle, interests, and preferences (i.e. gardening, walking areas, exercise, meal service)
• Transportation Options
• Ratings based on state inspections
  • Inspection scores can be found at IDPH’s website.
• Location
  • Is your personal support system close by?
  • What locations will make visiting convenient for them?
  • Are you near places you like to visit? (ex. Church, parks, favorite coffee shop)
• Ownership and Management

What Resources Can You Use to Research?

For a more general overview, check out websites like www.caring.com or A Place for Mom.

When is the Best Time to Consider Senior Living?

The best time to consider a senior community is before you need it! Touring and making tentative choices can eliminate the urgency in the event of the unexpected. Think of it like choosing a college, it’s best to be educated and take tours before the time comes to make a choice. It’s important to remember to do the investigative work when your friends, family, or support system have time to tour with you. Additionally, make an appointment with the communities you are considering, so the staff can ensure they spend ample time with you.

However, disaster does not have to strike to transition to senior living. Sometimes, this change can be relative to your individual situation. Things like care of your home becoming a burden or loneliness can be the perfect catalyst to make a change.

By: Kathryn Storm, PharmD PGY2 Pain Management and Palliative Care Pharmacy Resident VA St. Louis Health Care System & Emily Oliver, PharmD PGY2 Hospice and Palliative Care Pharmacy Resident Hospice of Southern Illinois

Steroids are commonly prescribed medications. You may know steroids as a drug that treats allergic reactions or bad colds. However, there’s more than meets the eye when it comes to this customary drug. Steroids, such as prednisone, Medrol DosePaks, hydrocortisone, and methylprednisolone, aid in a wide array of non-traditional reasons in end-of-life care.

Uses of Steroids in Hospice & Palliative Care

In palliative care, steroids manage several different symptoms associated with severe diseases during end-of-life care. In palliative and hospice care, they can help treat fatigue, pain, trouble breathing, nausea, vomiting, and poor appetite. 

When terminally ill patients are feeling fatigued, steroids can help boost their energy. This can help our loved ones feel more like themselves. Therefore, increasing their ability to participate in the activities that mean the most to them. This drug also has anti-inflammatory effects, which makes them beneficial in treating certain pain conditions. Used in conjunction with other medications, such as opioids, steroids soothe pain. They can also assist with breathing issues. They work by opening up the airways in the lungs, and the anti-inflammatory properties help prevent inflammation within the lungs; thus, making breathing easier and more comfortable. Regarding nausea and vomiting, steroids are efficacious in controlling and preventing symptoms. They work by decreasing the chemicals in the brain that lead to feelings of nausea.

Lastly, they can assist patients who lose their appetite during end-of-life care. By promoting our body’s hunger signals, patients feel hungry and able to eat.

Side Effects of Steroids

As with all medications, side effects can happen. The most common side effects include weight gain, insomnia, mood changes or swings, changes in blood pressure, higher blood sugars in patients with diabetes, and fluid retention. If used for long periods, they may also increase the risk of infection. 

In summary, given the wide variety of symptoms, they help manage, steroids used to treat severe disease and end-of-life care are beneficial for patients. They are generally well-tolerated and effective medications for patients in the palliative and hospice care setting. Improving the quality of life and making our loved ones more comfortable are some of the many great uses of steroids.

——

Resources: 

1. Cardenas-Mori, J., & Lewis-Ramos, V. (2020). Corticosteroids for common palliative care symptoms #395. Journal of Palliative Medicine, 23(7), 987–989. 

2. Shih, A., & Jackson, K. C. (2007). Role of corticosteroids in Palliative Care. Journal of Pain & Palliative Care Pharmacotherapy, 21(4), 69–76.

2022 is here! A time to celebrate new beginnings, but don’t forget to be proud of all you accomplished in 2021. In this blog, we are celebrating 21 Ways Hospice of Southern Illinois made an impact in 2021. At Hospice of Southern Illinois, we take pride in serving our communities. Since 1981, we have been a grass-roots, volunteer movement with offices in Belleville and Marion, Illinois. Our mission is to help patients and their loved ones in the end-of-life journey. Since our founding, we continue the tradition of focusing on quality of life, peace, and dignity for the patients in the communities we serve.

We are a free-standing, not-for-profit hospice. Our goal is to be your #1 choice in providing hospice care to your family and friends. Above all, thank you for your support in our 40 years of caring. We look forward to serving our communities in 2022!

1. Celebrated 40 years of serving our patients and their families – Hospice of Southern Illinois is an experienced leader in end-of-life care.
2. Served over 44,000 families since 1981 – We are your local, not-for-profit hospice with our roots starting right here in the Metro-East and Southern Illinois.
3. Donation from Carlyle Lion’s Club- In 2021, Hospice of Southern Illinois was one of the Carlyle Lion’s Club’s three recipients of a donation at their annual planning meeting. These funds helped provide supplies to our patients.
4. Flag Day Celebration – In June, Clinton County Vietnam Veterans participated in our flag folding ceremony in honor of Flag Day.
5. Business After Hours– During July of 2021, we hosted the Greater Belleville Chamber of Commerce’s “Business After Hours” event to celebrate our 40th anniversary with our communities. This event had a “Christmas in July” theme! Business After Hours serves as an opportunity for networking and collaboration between our community partners.
6. First Annual Blood Drive – Hospice of Southern Illinois hosted our first blood drive with over 30 donors.
7. Dementia Live – Our Marion and Belleville offices began offering Dementia Live, a training simulation dedicated to better understanding patients with Dementia. Therefore, we can inspire our community to better understand the Dementia population.
8. Volunteer Parade – To replace our Volunteer Luncheon with a more COVID-friendly event, Hospice of Southern Illinois hosted a volunteer drive-thru parade. This event was a way to thank our volunteers. Through our volunteers, Hospice of Southern Illinois is able to bring assistance to our patients, families, and community.
9. African American Health Fair – Our Marion team attended Shawnee Community College’s health fair. This fair featured topics focused on People of Color and allowed us to educate attendees about our hospice services.
10. Employee Appreciation Day– You can’t give from an empty cup! At Hospice of Southern Illinois, our priority is keeping our team’s cup full, so they can continue to provide amazing care and support. Our Marion office hosted a food truck, and our Belleville offices provided a box lunch for all staff.
11. Bringing Life to Hospice featuring Barbara Karnes, RN – American Hospice Pioneer, award-winning nurse, author of Gone From My Sight, and NHPCO Hospice Innovator Award winner Barbara Karnes made a guest appearance on our podcast to share her journey as a hospice provider. She was able to share her unique expertise with our listeners.
12. Golf Tournament in Belleville and Marion – 2021 brought Belleville’s 22^nd and Marion’s 19^th annual golf tournaments. The funds raised from our annual golf tournaments help us care for our patients and further our mission.
13. Hometown Heroes- We awarded goodies to the Highland EMS and Firefighters who exemplified outstanding service after a fire at Cedarhurst of Highland.
14. Honor Flight in Marion – Our volunteers participated in Southern Illinois Veteran’s Honor Flight #7 at the Veteran’s Airport of Southern Illinois, honoring retired military personnel!
15. NHDD Airpod Contest – Our podcast hosted a giveaway to promote awareness of National Healthcare Decision Day!
16. Pet Therapy Program–We welcomed Charlie as Hospice of Southern Illinois’ newest therapy pet. Charlie visits patients in long term care and assisted living facilities to bring joy to patients and families.
17. Valentines from Students – Hospice of Southern Illinois partnered with area schools to create Valentine’s cards for residents at long-term care and assisted living facilities.
18. Reuniting Families– A local Mother and Daughter were reunited at Aviston Countryside Manor after 7 months of separation due to COVID-19 protocols. Watch the video on our Facebook page!
19. Flowers from Women of Hope Women of Hope provided flowers for Hospice of Southern Illinois. As a result, our volunteers were able to make 75 bouquets for patients and families!
20. Assisted Living Garden– Our Hospice Volunteer department planted a garden for a local assisted living facility.  Collaborating with our facilities on activities to boost resident’s morale. 
21. Great Place To Work – Last but not least, we are proud to be Great Place to Work Certified for the second year in a row! Much gratitude to our hospice team for their commitment to our organization.

Simply the Word Blessing

Dear Friend,

      I never thought I would be in hospice care but last December I was given two weeks to live.  I had been in and out of the hospital most every month during 2019 and my body was not tolerating cancer treatment.  When my wife, Louise and I  first met with the nurse from Hospice of Southern Illinois, I politely declined their services.  The nurse was nice and explained everything to me but I wasn’t ready.  I had seven different doctors and I went to several appointments a week.  How could I just stop going to all of them?  You see, I literally thought hospice care meant that you went home, a volunteer came and sat with you and waited for you to die.  Boy, was I wrong.

” If I had to describe my experience with Hospice of Southern Illinois in one word, it would simply be the word blessing.“